Tuesday, January 24, 2006 2:39 PM CST

Last week recap:
Wednesday discharged from Chapel Hill
Thursday labs & debates on placement of picc line
Friday new picc line for Savannah and broken wrist for EJ
Saturday g-tube falls out during night
Sunday day of rest - Vanna slept until 1:00
Monday labs and first day back at school

I was hoping that because Friday was new picc line day and Saturday was new g-tube day that Sunday would be new liver day! Oh well. Just not time yet.

Ej gets his new cast tomorrow. At this point and time the color will be.... (drum roll please) PINK! Yes pink. Why would a boy want a hot pink cast you ask? His reply is, "To attract the girls!" The newness of haing a cast has worn off. He is tired of itching now! Writing is no longer problem to his dismay. He has started yet another new medicine. Unfortunately the last one worked beautifully but medicaid deny us funding. The reason? "He's not sick enough." Oh, how ironic. Savannah wasn't sick enough for a second transplant either. So far this medicine is not working as well. Hopefully the dosage can be upped and that will do the trick. In one of his classes at school he had to design a t-shirt. He made an organ donation awareness shirt and had to present it to the class. I thought that was awesome of him. I'm sure he would have had more fun designing a video game shirt. Overall he is doing very well.

Savannah started back school Monday and is so happy now. Going to school gives her a sense of normalcy. She was late Monday because of labs and her class was having Chapel. I try to sneak her in and there is little miss Caroline. Caroline is very outgoing. The speaker is in a dramatic part of his lesson and yells. Well, this makes Savannah jump a mile high and then Caroline spots her and starts waving to her franticly! It was too cute. They all missed her as she did them. Tonight she has homework. The class is reading now. Savannah can't read much less conquered the letter sounds yet. I am trying not to worry about it but I do someetimes. I try to look at this school year as a social educatttion for her. This is her first time ever being socialized outside of church. I just hope she doesn't become to aware of how far behind she is. She is insecure enough.

Savannah's labs on Monday pretty much stayed the same. That is better than getting worse. Her hair is coming our at a rapid pace again and she is bruising terribly with little effort to cause them. We are suppose to go back to Chapel Hill Monday but I am going to try to get out of it.

Today is Stan and mine's 8th annivesary. I was telling Vanna on the way home from school that dad and I would be going out to eat tongiht because it was our Happy Anniversary.
She got all excited and asked, "Mom, are you and Daddy going to get married again?"
Then a few minutes later I yawned real big and said I am sleepy tired.
She says, "Mom you have to wake up. It is you ninavesy."
I love this age when they are trying to put things into concept. A few nights back I was on the computer and she asked if she could play a computer game. I told her yes when I am finished. She puts her hand on her hip and informs me I only have 10 hours to get finished! These are all precious moments for me!


I guess thats it for now. just waiting on the call. Please keep my family in your prayers. I Love You All.

Friday, January 20, 2006 8:48 PM CST

Monkey gas stinks. It stinks really bad. Just ask Savannah!

Just another typical day in the Loftis household. Savannah and I shower to get ready to be at the hospital at 10:00 this morning for her picc line. While we are drying off I think I hear the phone ringing. I check and no (but it really was). Then I think I hear someone knocking at the door, or pounding actually. I see Rocky and he's not barking so I fugure no. (but there really was) Then the door bell rings so duh someone IS trying to get a hold of me. I peep through the peep hole and it's my mom freezing to death looking desperate to get in. I took a deep breath because I know Chapel Hill may be calling with a liver and they couldn't get me so they call my mom. (but it wasn't) I've lost my mind I tell ya! She then informs me the high school has called and thinks Ej has broken his wrist! Like I said just another typical day. So we ended up with EJ & I in the ER while my mom and Savannah handled the picc line. All I could do was laugh!

EJ thinks this broken wrist is the coolest thing! When he found out he was getting a cast he says, "Sweeeet!" Then informs me he can't go to school for a month because he can't write but when he wanted something to eat and I told him he couldn't in case surgery was needed the wrist was all better. So, yeah, I have a teen milking his first break. It is too funny.

The hospital lost the orders for Savannah's line so she didn't go into the ER until noon. The surgeon had to use ultra sound to find a vein but finally found one. He gets the cath part way in and that was it. The vein was blocked. He had to use dye to find another one. This one was twisted and curvy but after much manipulation got it in. He kept apologizing because he knew she was going to bruise & swell very badly. He and her pediatrician are encouraging me to get another port. I tell them I would in a heart beat but CH won't allow it. We will see. So we are once again home and both the babes are doing just fine! Savannah even told me she likes this picc line much better than the other one and she is glad she got it!

Now the monkey stinky gas. Savannah wasn't given her usual "happy juice" that erases her memory of being seperated from mommy, seeing the scarey OR room and being put to sleep. This evening we had a talk. She tells me every detail including the thing you put on your face to breath. We talk about how it helps her take a good nap and that way she doesn't hurt when they put the picc line in. We agree it is a good mask. She then tells me that the nurse told her what she was breathing was monkey gas. I ask Savannah if it smelled like monkey poop! She started laughing and said no monkey pee-pee! Then we both laugh a lot until she corrects us both. Mommy it is monkey gas. Really stinky monkey gas.

So, that's it for now. We are home thank God and things are going smooth for the moment. I'll take it. I talked with our transplant co-ordinator again tonight and she said that every evening when the staff goes home they say tonight is the night we will get one for Savannah! She is the back up on call this weekend and has let the on call nurse know that she wants to be the one to call us this weekened if we get it. She is great and has been wonderful to us.

Thank you all for holding us up in prayer and supporting us. I love you all.

Thursday, January 19, 2006 6:57 PM CST

HOME!!
Yes it is true we are home, but just barely. What a terrible discharge! I should have known. The resident comes in at 8am and tells me they are starting on the discharge papers. WOW! We will be out by 12:30. That was the plan anyway. We would be out and home in time for the 6:00 dose of IV antibiotics. Home nurse would meet us there. Around noon our hositpal nurse decides to change the dressing on the PICC line. The line is not stitched down adn guess what happened? Oh yes, she pulls the line out a couple of centimeters but she didn't stop there. She had me sterile up and try to hold the line to keep it from slipping. Now why wasn't somebody there to slap me. Duh, so she puls it out a couple more. Geez. Well, we had to wait for xray to make sure it was still central or at least mid-line. 1:00 or so no one can tell so we had to go downstairs about an hour later to do more xrays. Another hour or so and sevral people confirm it is mid-line. We were hanging around because the picc team was ready to place a new line if needed. That was a must before going home. No problem but aparently it was in an ok place. The nurse starts going over our discharge instructions and Savannah's meds were so messed up. I couldn't believe it. They had me only giving her prograf once a day, stopped her prevacid, and no antibitics IV or oraly after the 22nd. So, we hang around and around. Finally head home at 6:30. The meds had already been deli8vered to the house and after speaking with several people VHP agreed to not make there visit until today for the noon dose. We had labs this morning and a couple of errands to do. Savannah was very tired. We came home and there was a message from Chapel Hill telling me that Savannah's PICC line needed to be replaced. It is actually a periohreal line and not mid-line at all. Just when I was begining to relax... After many many more phone calls, actually having to go to doctors offices because of not being able to get through on the phone and convincing Chapel Hill I could arrange to have this done locally it has been sch. for tomorrow morning. Then my tx co-ordinator calls and tells me that the line may not even be usable. I am about to go crazy now. I tell her that I was told it was a mid-line and now someone is saying it is periphreal. I hang up and the liver doctor calls. He went and confirmed himself that yes the picc line is no longer. DSo not use it at all. So here I am about to give the 6pm dose and voice my concerns of Savannah nmissing 3 doses possibly 4 until we get the new line. He says if I want we can go to the ER sit for a couple of hours waiting to be admitted, put Savannah through who knows how many sticks to get another IV in and then wait another couple of hours for the pharmacy to get the meds up to us. Long story short I am keeping her home, missing the doses and will have the new picc placed tomorrow. Please pray that the infection will not return. Chapel Hill doesn't think she can go through another infection. Oh dear, it is time for meds!! I will update more tomorrow or Saturday when I am more rested. Time for oral meds!

Tuesday, January 17, 2006 11:35 PM CST

Ashlee & Pam, thank you so much for the care packages! Savannah loves the PJ's and the "don't worry be grumpy" shirt is perfect! Wish it fit me!!

For those of you that know me know what I mean by I'm mentally spent. I've took all I can take. All I know is for future hospitalizations I have got to figure out a way to get breaks. I will probably have to make myself go to Ronald's house every so often. I feel so bad leaving Savannah. I have to watch the meds because they sometimes get messed up. Just last night the nurse gave me her 1 mg tac to give her at 7:00 and then at 9:00 comes in with 1.5 mg more. Totally by mistake but my point proven. Anyhoo, we will be coming home tomorrow if all goes well. The new liver doc wanted us to stay another week. His argument was her T. Billi was still high (1.6- I informed him that is the lowest it's been since February), stay to finish the IV antibiotics (I can do those at home), to have her kidney workup done (we finished it this morning), and then to get her tac level where they want it (I monitor these at home with the local lab). So my argument was Savannah has no "real" need to continue to stay. They are not doing anything for her that I can't do at home. Blood pressure, weight, tac level, IV meds can all be done at home. I also used EJ and let the new doc know that I also had a son at home that needed me. I feel like sometimes these docs think we are on vacation when we are here. HELLO!!!! So anyhow I told him (after having to have him paged just to get him to come & see us) that I wanted to be home no later than tomorrow (Wednesday). He said I will do whatever needs to be done to facilitate you and then walked out. I had some questions for him but figured Oh, well. I scared him off but that's ok. All the other docs have had to learn me and so will he. I have also learned from experiance that if anything shows up wrong that needs attention on any tests we know within a few hours so I'm not concerned about her heart and kidneys. Yes, she has hyper tension. Is it from her kidney's? I do not know that yet. I will find out tomorrow before we go home, all the details that they have as far as her testing on Monday & Tuesday. She is doing so much better except for being emotional but hey I am too. She told me tonight that it is really hard for her to sleep here. We agreed she will sleep better at home. She has lost all but 2.5 pounds of the fluid with the help of one oral diuretic. Her blood pressure continues to stay higher than what they want. That boggles me because I always kept an eye on it at home and we haven't had this problem until this infection. I haven't checked but wonder if some of the new meds she is on is causing it. That's the jist of everything for now. I am really anxious to get home. I know we will be getting "the call" soon and would like to have a little break from here first. It will revive Savannah & I both for the next go-around. Thank you all for the prayers and please continue to pray for us.

Sunday, January 15, 2006 12:46 AM CST

Tosay is Sunday and Savannah is showing wonderful signs of being able to go home soon! Today her labs are picking back up and if she can stay where she is we will go home in a couple of days! She has a little under 4 pounds of fluid left but is gradually losing it without the help diuretics.

Dad, EJ & my mom all came back down yesterday. Stan & I were able to go get something to eat and then I was able to stay at the Ronald McDonald house with EJ. T, dad & EJ went home today but thanks to the financial help from my brother, my mom is getting to stay with Savannah & I again! Thank you Cliff!! Yesterday we had a wonderful visit from our donor family. Joe & Gena brought little Abby with them and I spent the afternoon playing, rocking and feeding her. I held her for the longest, while she napped. It was an honor and as always we enjoyed the visit. After I get home I will post a picture of her.

Savannah received some $ from a dear friend and I took her to the gift shop today. She bought yet another balloon (she has 6 now lol) and a vevet coloring page with markers. On our way back to her room she informed me that in the morning she would go back to school. She says I won't throw up any more and I can go back to school! She misses it terribly.

I love you all and will update again soon. Please continue your prayers for Savannah's liver to come soon adn that God be with all the grieving families. There are many having anniversaries and many more sepnding there last days with their loved ones. May God's grace be upon them.

Thursday, January 12, 2006 10:08 AM CST

I can't believe how fast January is passing me by! As of today, Thursday, Savannah has lost 8 pounds of the 11 of fluid but has put back on another pound. They had to stop the lasix Wednesday because she was dehydrated despite all the fluid/lipids & TPN. She will get 1 dose of lasix today. Her albumin is slowly starting to drop again but at this point doesn't need replacing. For some reason her WBC is high. Funny how when Savannah was so sick with infection her WBC never budged. You never know what is brewing in her little body. She has a tolerance of the bactrim now and that is what was neede to fight the stool infection. They started her on the cipro again but didn't think it would take care of it. All the docs involved have debated and debated on her best course of treatment and I haven't been able to keep up with all the med changes/additions etc. Hopefully it will slow down soon so I can get a grip on it again. There is still no talk of home. She is too unbalenced yet and they are wanting to keep a very close eye on her.

Savannah recieved happy mail from her classmates yesterdayu and wa so excited. We have all the handmade cards taped to her wall and she is anxios to write back to them! Thank you Mrs. Carter! She misses school so much. I guess that's about it for now. Pretty boring but we LIKE boring!! It is kind of funny because the past 2 nights we have stayed up past midnight watching movies. Last night was Beauty & the Beast and I bawled my eyes out. Too funny. It is suppose to get to 70 degrees today. That will be nice! T will be here with us till the weekend then she must return the real world also. Pam, Savannah got her bear, she is so pretty! Thank you. Please keep us in your prayers along with all the families who are struggling and/or grieving. Love you all.

Monday, January 9, 2006 7:34 AM CST

Sunday. A day with progress! Savannah has lost 2 pounds of the eleven of fluid!! Within 24 hours she went from only walking 10 feet before the pain took over to walking to the pantry 3 times, the nurses station once and determined to walk downstairs! She is still on the orders of no food but was hungry last night. I justified her eating a saltine cracker and 10 cheerios because she had lost 2 pounds. You do not want to tell a child woth an eating oversion no to food if at all possible. Needless to say the docs decided not to tap her belly and pull the fluid off. I believe it was just a natter of getting her albumin level up enough to attch to the diuretics. We are still waiting on kidney results. Not sure if her lack of producting bicarbs is from her infection or if this is a new ongoing problem. As a refresher, the kidneys have been under a lot of strain from all the meds. It is not surprising if a child who has been on high doses of the meds like Savannah for a year to need a kidney transplant. I have faith that God has protected them and this is a temporary matter that will resolve itself as she improves.

One of her nurses brought her a night gown last night. It was so sweet. Savannah hates the hospital gowns but with her weight gain I only had 1 that wouldn't bind her so the nurse brought her a bigger one. Thank you Lee and what little girl doesn't love Barbie! Gabby got to come visit alomg with Bree (my mom) and daddy going home. Mamaw & T have come to stay the week with us. EJ is doing fairly well. He has his ups and dons. His nerves really get to him sometimes. Please pray that God will comfort him and give him peace.

This picture was taken Saturday. We are able to put pillows in the wagon to help support her belly so she is in minimal pain.

Here is a picture of little Mason.

Well, thats about it for now but what wonderful news! Thank you all for praying and please continue. Please pray specificaly that Savannah will get her new liver very soon. She will only continue to get worse and the healthier she is at the time of transplant the better her odds. I love you all.

Saturday, January 7, 2006 6:29 PM CST

Savannah has had pretty much a boring day which is fine with me! Last night we were graced with a visit from our friend Pam who brought Savannah some goodies and my mom the hot chocolate just before she went into with drawals. Thank you Thank you!! We also got to spend some time with Mason and his family before they were discharged. His MRI showed he is still clean so his little fett curling is totally treatment related. Unfortunately he can't walk now and has also lost all control of hos muscles from his waist down. Please remember him in your prayers. Daddy & Aunt T did make their appearance today to Savannah's delight. I was awakened by a silloette figure pulling what resembled a sleigh. I thought, Santa? No it was Mrs. Tracy with a wagon full of groceries! Thank you so much! Dinner was wonderful! Over night Savannah gained 1 pound and 2 ounces. Obviously the diuretics are not working. The reason for this is her albumin is to low. That is being replaced via IV as well as vitamin K shots for 3 days. There is another bacteria that was found in her stool so she is on yet another antidiotic. The docs added a 2nd diuretic and said if she shows good out put today they won't tap her tomorrow. She is definately more alert today and tired of the couch but it is to painful for her to sit up in any position. We have spent a lot of time taking wagon rides because she can lie down and is beginning to tire of her room. That is a good sign. Her will to fight is shining through! TPN was started today and she had her last steroid pulse tonight! The cellcept has been stopped and tac level has been dropped to 8 in order to let her body help fight the infection. We had her so suppressed to protect the liver from rejection so it could heal but now we know that it isn't so the priority is getting the onfection gone. I am not sure what will happen if she goes into rejection at this point. I wonder if it would speed up the deteriation process or not?

Please continue to keep us in your prayers. Savannah is currently arguing with her dad about who is going to sleep with her. The steroids make her even more stubborn if you can imagine. She is determined that mom is sleeping with her no matter how much daddy begs!

Thank you to all of!

Friday, January 6, 2006 8:10 AM CST

Thank you all so much for the guest book entry's! They have me smiling and even laughing at times! I appreciate it...
Duke in my heart?? hmmmmm are they good looking? lol Pam, I'm sorry I missed you, again. Believe me, every shift change I say, "No Gretchen PLEASE." They just laugh and say ok.

We have good news and bad news. The good news is Savannah's PELD score is now 28. The bad news is Savannah's PELD score is now 28! She is still very sick. We are hoping that the infection is starting to be tackled by the 5 IV antibiotics. Her last blood culture is still negative. She did become septic which promted the PICU. She is so miserable and can hardly move around from her belly being so big and the additional fluid in the rest of her body. This is putting her lungs at risk for fluid and collapsing. The swelling has went down some in her face but her belly is the biggest I've ever seen it. She can't lie down but falls backwards - it's like she's pregnant with twins. I know, I've been there. They are doing daily xrays to keep an eye on her abdomen and lungs (2 yesterady). The docs have said numerous times that she may not fully recover until after her transplant. Meaning they may get rid of the infection but the pain, swelling, labored breathing, elevated heart rate and blood pressure may continue. I pray that it doesn't. She misses school so much and I don't want to have to pull her out. Please pray that God will take the pain and suffering from her. She isn't able to take any narcotics for the pain because they are afraid her liver won't be able to process them and then she would go into a coma. A PIC line will be placed today which is also wonderful news. Her veins are shot and they are having to dig just to get arterial draws. She will continue her steroid pulses until tomorrow night completing 48 hours. TPN will begin tomorrow and lasix rotated wil albumin today. Hopefully she will not need anymore plasma but you never know. Let's see, I think that is about it for now. Thank you all for caring and believing!

On other news our PICU neighbor recieved his liver transplant yesterday. He was near his end so it came in the nick of time! It was very exciting. Also, remember little Mason? The one who we met in the PICI when Savannah had her transplant? He had the brain tumor that was cancerous and I reported a few months ago that he was clean? He is here so we got to spend some time woith his mom last night. I am hoping to get downstairs to see him later on. He is here because his feet are curling under and he is in a lot of pain. Something to with the radiation causing the bones to be weaker than the muscles. He should get his MRI today. Pre radiation his hair was red as could be. His mom said that where the radiation went in the hair is coming back black and blonde every where else. Dad will becoming down this weekend as well as T & Mamaw. Momm will be heading home Sunday so she can get back to work. I am not sure how long we will be here but it will still be a while at the rate we are going. I love you all -

Wednesday, January 4, 2006 1:38 PM CST

Please pray for Savannah. She is being moved to the ICU. She is very sick. I will update when I can.

Tuesday, January 3, 2006 6:15 PM CST

Savannah is still very sick. Her fevers spiked out at 103.8 today. Not sure if the anti-biotics are working or if they just need another 24 hours to be able to kick butt!? Anyhoo, ERCP was scheduled for tomorrow but after the doc examined her they had her in the OR within the hour. They did find some sludge in the main bile duct so the stent was replaced. They of course tried to get pics of the biliary tree in the liver in case there was a blockage above the stent but her liver is too scarred for any readible pics. If her billi startes going down with next labs then we will know it was just the stent. If not then they may have to put a drain in. Her blood cultures grew out gram negative rods within 12 hours so there is a definate infection in her bloood stream. Thankgoodness we got here before she became septic. What is odd is that her white blood cell count had stayed normal but then again when you don't have many liver cells I guess it isn't. Her GGT & Alk PHOS have also continued their decent reflecting how very few ceels she has left. Right now things are much better than the situation could be and hopefully they will continue to get better. Once she has gone 24-48 hours with no fever she will begin a 21 day course of IV anti-biotics. That means another PIC line. She is still very dehydrated (even after bolises) and it is taking numerous sticks to get any blood from her. She is such a trooper. The nurses sticke her and dig and restick her and dig some more and she never even whimpers. They lowered her anti-rejection meds to let her body help fight but it is so scarey and dejavou for me. With her 1st transoplant this is kind of how it all started. She got an infection, coukldn't shake it and then things snowballed from there. I am especially concerned with her meds being lowered that her body will once again attack her liver, or at least what's left of it. Please pray that she will get well soon. I love you all and will update again tomorrow.

Monday, January 2, 2006 11:32 AM CST

As most of you know we did end up back at Club Med. We still don't have any definate answers but she is in the right place and getting the IV cocktail of the 3 high powered antibiotics to rid off whatever this may be. She did start with vomiting last night and fevers as high as 103.5 this morning. All her labs are up but most likely from the infection. Her coags are up enough to cause alarm despite being on the vitamin K. It is really a shame that she feels so horrible today because her favorite cartoon is having an all day marathon. Dora, of course is her favorite and Savannah's missing all of it. I will do another update tonight (if the ultra sound shows anything new) or tomorrow if things are still ahnging out. Wouldn't it be just so wonderful if her new liver came while we are here? I\Please pray that she will get her gift of life very soon so he doesn't have to continue to suffer. That is the hardest thing for me, watching my baby girl hurt and knowing I can't do a thing in this world to releve it for her. I love you all- Me

Sunday, January 1, 2006 0:05 AM CST

Savannah has been very sick since Friday. She started having abdominal pain so severe it was effecting her ability to walk. About 30 minutes later fevers began. The highest Friday night was 100.9. Saturday morning and afternoon were spent doing cultures, blood work & ultra sounds. Everything looks normal. We came back home and fevers continue with rotating motrin and tylenol every 4 hours but still climbing up to 101.9. The abdominal pain has continued off and on bringing her to sobs this evening. Not sure what is going on. Please pray for her. She needs a new liver.

Happy New Year to everyone and I pray it will be better than the last!

Friday, December 16, 2005 7:57 PM CST

Another update for today. Before we left the doctors were questioned about the biopsy and we have more details now. They are as follows:

The results are in. Savannah’s biopsy shows bile ductubular proliferation with acute inflamation and severe fibrosis where 6 months ago it was patchy. Her bile ducts are in no way healing as we had hoped for. They are performing a trichrome stain on the sample and it is still pending. All that will tell us is approximately how many living cells she still has. You only need 10% of your cells to have a functioning liver. Apparently the cells that are still alive are doing there job as reflected in her labs. Her labs are not an indication of how well the whole liver is functioning but lets you know how well what cells are left are functioning. That is the reason we have seen such an improvement the last month. Today her T. Billi is 1.8. That is the lowest it has been since she got sick post transplant. In English, the scaring, vanishing bile ducts along with no bile flow is increasing. Her liver is not healing but continuing to deteriate. The liver continues to amaze me as well as Savannah. She is so awesome and God is taking care of her through this. Monday UNOS will be appealed on Savannah’s behalf for a higher score. I’m not sure what good it is going to do since she is already #1 but I guess you continue upping the PELD to reflect the sickness until you reach Status 1 National or get the organ. Working our way up the ladder. We are not sure how much time she has. Could be tomorrow or a few more months. At some point she will reach the point of not being at home due to the complications that will arise from the blood clot and the fibrosis/cirrhosis.
I am very hurt and disappointed right now. I was so hoping for there to be some healing. It’s just this roller coaster. It won’t stop. I want to get off and I can’t. We got home about 5:30 this evening and Savannah is still very sore. She’s ok though now that she is home. I am very tired because Baby Girl wanted her mom to sleep with her every night on a very narrow couch. I loved it but didn’t sleep from worrying about kicking her or getting tangled in her lines not to mention the nurses coming in & out all night or the nightmares. I guess this is scattered and I apologize. Please pray for us. For my family as we go forward letting God carry us when we will allow Him to and trusting Him for everything.

Friday, December 16, 2005 9:21 AM CST

Hello all. We will be going home today! Hopefully be out shortly afternoon. Savannah's biopsy showed severe cirrosis, no rejection, an obstruction in the outflow. We are still waiting on the smear results to come back. Wasn't the news I was looking for. She is still very sore today and very very emotional. She has had enough. Cries at anything, won't eat or drink, etc. Anyhoo, can't wait to be home and we have told everyone here Merry Christmas and we won't be back until next year! That is my prayer anyway. So for now we will continue weekly labs and they will let us know soon when to come back.

Thursday, December 15, 2005 5:32 AM EST

It is Thursday morning and we are still in Club Med. Tuesday we come in at 8am to register. I ask if there were orders fopr blood work to have her coags checked. No, there wasn't any. We go down for ultra sound to have the spot marked for the liver biopsy. Then we head up to the 2nd floor to wait. The doc who is going to perform the biopsy comes in tohave the consents signed. I tell him that her coags have not been checked. He said we had them checked a few days ago right? I told him yes last Wednesday. He says it will be fine then. They probably haven't changed. OK your the doc I think to myself. An hour after they take her back he comes out to the wiating room to tell me he didn't do it. He made the incision in her skin to open it up for the blunt needle. He couldn't get her to quit bleeding so he didn't do it. He said maybe I'm being to careful, I don't know. But these procedures scare me anyway but I don't won't to be to scared. (This is a very experianced doc) I reassured him that I appreciated him not doing it. I mean goodness. If he had went on ahead she would have probably bled to death. We had her coags checked and they were off. Arrrg, frustation. They put my Baby Girl under for nothing. If someone had checked her coags........

Wednesday we did get the full ultra sound and MRI completed. Neither brought good news. The clot has changed. They believe it has gotten longer. They couldn't find any blood flow in some of the veins. It wouldn't show up even with putting Savannah in numerous odd positions. Possibly the flow is there but so slow it wouldn't show itself. Her spleen is bigger than last time. The fluid around her liver and spleen is still there but hasn't enlarged.

The good news is her T. Billi was 2.0 yesterday! It hasn't been this low since January. It looks as if (the biopsy will confirm) the biliary tree is finally healing. If the biopsy today confirms this then it wopuld be resonable to consider making her inactive with UNOS. But, yes here's the big but, Savannah doesn't do anything the way you want her to or the way that would be most beneficial. The blodd clot, oh yesthe lovely blood clot is more than enough reason to be retransplanted therefore keeping her on the list. Just think, if she had not developed this clot the news of her biliary tree would be so exciting. We have been praying for god to heal her for so long and now it could be happening. Buoh no. The dark cloud continues to hover over her. Please help me pray for God to once again interven. My wishes are that he would remove the clot, heal the biliary tree and we go on with life. I know He may have other plans and I know he does know what's best so don't listen to me and pray for God's will to be done in my families life. I may not like His will but that's ok. His will is perfect.

In short our plans for today are as follows:
Savannah has been NPO since 3am and the procedure should happen pretty early. They will make an incision in her neck at the juggular vein. They will feed a catherder into the vein and follow it to her liver and take a sample. Less risk of her bleeding this way.

Please say a prayer for me. I am really frustrated with how much school and therapies she is missing. Maybe it will pass or maybe I will have to make some changes. O need guidance. She is of age where she knows she's different. She is fragile ion that way and I don't want to leave any negative marks on her by my decisions. I love you all, I am tired and I miss home. Will update again when there is more news.

Sunday, December 11, 2005 8:47 PM CST

Tomorrow (Monday) we are headed to Chapel Hill. We will have a side biopsy (her blood was thick enough Wednesday keeping us from doing a juggular -vein in your neck- biopsy), ultra sound and hopefully MRI to check on the portal vein thrombosis to see if there is any change. Savannah has been running a fever since Wednesday night with a runny nose. I am assumiong she has a touch of cold. Please pray for our safety and EJ. He is always terrified that we won't be back for weeks. Dad is making this trip with us. Makes it so much nicer. Savannah misses her daddy very much when he isn't with us. Hope everyone is having peaceful and enjoyable holidays. Love you all.

Wednesday, November 30, 2005 9:16 AM CST

Savannah’s labs Monday looked wonderful! I’ll take it! Her ALT & AST stayed the same with both in normal range. Alk Phos stayed the same with GGT dropping almost 200 points! T. Billi went from 4.4 to 3.2! Still high but getting lower for what Savannah has been running! WBC & Platelet’s are up and in normal range! I love it when we get happy number’s! She has also lost ½ pound so her breathing is doing better. Her blood pressure has been normal.

Our tree is up and we had a great Thanksgiving! We did go see Disney on Ice and oh my goodness. I was worse than the kids! The energy level and excitement of everything whisked me away and I had a blast!! Oh, the kids did too. During the pizza party when Mickey & Minnie came in for pics a bunch of kids ran up and started hugging them. I told Savannah to g hug one of them and she did! There were so many kids in our room that I had to get a quick picture so it’s not the greatest but at least I got it! The whole show was so awesome. Savannah would scream and luagh every time a new character came out on the ice. She loved it! EJ tried to get out of going but I forced him. He enjoyed it too. We were able to take 2 of Savannah’s cousins with us, Maddy & Noah and they had a great time also. They have several different shows and the one we saw was Celebrating 100 years Of Magic so we got to see everyone from Jimmeny Cricket to Nemo and everyone in between! It was beautiful. At the end they even did fire works! Yes, to me this was the next best thing to actually going to Disney World. Thank You Eblen for thinking of us!

HERE THEY COME!

SAVANNAH STEALING A HUG FROM MINNIE

MY GANG- MADDISON, NOAH SAVANNAH & EJ

WE WON'T DISCUSS WHAT A FOOL I MADE OF MYSELF WITH THE LOCAL NEWS GUY...

I am still waiting to hear from CH about our next appt. I requested that it be before Dec 13th so it will give her time to recuperate before Christmas. She discovered syrup Monday. We went to the Cracker Barrel for lunch and she got a pancake that she didn’t eat, of course. She asked me what the syrup tasted like and T told her like sugar. Now Savannah always asks what something tastes like and has tried syrup many times but never liked it. Well, she took a liking to it and got a pretty good sugar high going on. On top of the syrup she was drinking my sweet tea. T & I couldn’t help but laugh and enjoy it. We had never seen her on a sugar high. The first ½ of PT went great but then the downer came and she would lie down every chance she got. I felt sorry for her on one hand but on the other enjoyed the experience that you usually watch with your 2 year old in dread. Yesterday she ate very little but at least she is trying again.

That’s about it for now but I will update again when anything comes up. The Holidays are so busy!! I love you all and appreciate each and every one of you for checking on us!

Tuesday, November 22, 2005 3:00 PM CST

So labs look ok. GGt & Alk Phos up by 100-200 points. T. Billi down to 4.4. She had a rough night last night. The left lobe of her liver is now swollen and just as hard as the rest of it. Because of this she had very shallow breathing all night and I didn't sleep much for making sure she was still breathing. Her weight today is 1.5 #'s more than 2 days ago. Fluid, Bile or something in there. Her blood pressure is up today also. That hasn't been an issue in a long time. She still isn't drinking. She did go to school for 2 1/2 hours and did fine. She is very tired now but loving watching the snow. We ahve decided to put our Christmas tree up this evening so that we can enjoy it as a family while we know we can. Who knows what the next month holds for us. We4 are going to see Disney on Ie tomorrow night and Mickey and Minnie will be coming to the pre-show pizza party to say hello to the kids. Savannah is so excited. She is going to where her Cinderella dress. I hope this isn't as close to her "make-a-wish" wish that she ever gets. I'm sorry but when you watch your baby get so sick you can't help but worry. Love you all-

Monday, November 21, 2005 1:57 PM CST

We made it home Sunday afternoon! Savannah wanted to go to school today but is still very tired and has slept most of the day. Maybe tomorrow. She isn't eating (no surprise) but now she isn't drinking so the tube will be in full use. We are now back to weekly labs again. I am getting very tired emotionally again and am going to try to go out this evening by myself for some R & R for my mind.

I am going to try to explain her current health status as it has been explained to me. The ERCP showed that the narrowing in her main bile duct looks better. Not normal but better. Her next ERCP in 3 months the surgeon will try to leave all stints out giving us a stint free Baby Girl! The pictures that were taken of her biliary tree (all the bile ducts inside of her liver) were compared to those of 3 months ago. They look better. Not normal but improvement. This is what we have been praying for all along so it was great to hear! Her last biopsy (6 months ago) showed minimal scaring. Considering the progression of Savannah’s liver the past 6 months in other areas it is safe to assume that more scaring has happened since. Scaring happens with rejections, infections, etc. If this is true the biliary tree trying to heal itself will only cause more scaring. If the scaring is still minimal then there is a small possibility that her liver will heal enough (if the biliary tree continues healing) to not have to have another transplant. I asked about the portal vein thrombosis (clot in the artery bringing blood to the liver) if it was medically possible for it to go away considering her labs indicated so. The answer was no but that it is possible for it to have thinned. The only way to know is for another MRV/MRA & ultra sound to be done. The only way to know about the scaring is for a biopsy to be done. We tried that last week but her blood was to thin. This is from 1 of 2 things. Malnutrition or liver failure. We all know she’s not malnutrition because of her Pediasure feeds. She has been put on a vitamin K supplement to prepare her for this in a couple of weeks. At that time we will also have our 1 year post transplant checkup that will include an ultra sound. I do not know if they will repeat the MRA/MRV at that time or not.

I have a lot of mixed feelings about this and I’m sure you can see why. One day at a time. On to other things. Saturday night we were offered free tickets to the UNC basketball game. Bree & I were both to tired. If it had been against Duke I would have went but it wasn’t. Today Eblen called and they are sending us to see the Disney On Ice Wednesday night. That will be awesome. We have never been to see it! I just hope Savannah is up to it by then. We are supposedly going to have some snow tonight. I love the first sight of snow. Even is it is only a few flurries. It is so magical. So, this is our life for now. We have labs tomorrow so I’ll do another update then. I love you all and please remember us in your prayers.

Saturday, November 19, 2005 3:13 PM CST

Savannah is having a very good day today! She really perked up when daddy, T & EJ walked throught the door nor to mention Bree & I. I got another room at Donald's and we will go get some rest. I had a talk with Savannah's surgeon this morning and will elaberate more on that after I process it all. 1am tonight will mark the 48 hour culture on her blood. As long as it is still neg we might just get to come home tomorrow! Also, tonight will finish her 48 hours on the IV piperacillin/zosyn. She is very yellow today and I am hoping that it is still just her liver getting over the manipulation from Thursday. Her labs are out of whack but you expect it for a day or 2. It's just been a while since I've seen her this jaundice. I will go for now so I can try to regain my sanity. Dad & T are going to stay the night tonight!! Love you all-

Friday, November 18, 2005 12:06 AM CST

Wednesday evening the hospital called to let me know Savannah's appt. had been bumped up to 10:15. No problem. We had to be there at 8:45. We wait and we wait. Finally I go get a pager so we can go for a walk. Of course 10 minutes later they page us. We go into the OR holding. We wait and wait and wait. We find out there was a NICU emergency and they took our spot. No problem. I get another pager and the doc said to be back at 1:20. We go walking and come back at the specific time. 10 minutes later they are ready. I give Savannah her happy juice and they allowed me to go back wtih her until she's asleep. 2 hours later we have good news and bad news. The bad news, her coags were off so they did not do the biopsy. The good news, we will be discharged besause of no biopsy! More good news, the narrowing in the main bile duct is not as bad as last time. They put the baloon is and try to get 2 stents in but could only get one. The pictures of her biliary tree were compared to last time and 2 docs agrred that the biliary tree has improved!!!! We have been waiting for that news for a long time. They said they were by no means normal but they had improved. Long story short if the liver is finally starting to heal she still has to have another transplant because of the clot. Well, I want them to look for that clot again because I think it is gone. I will have to talk with the surgeons and see. The bad news, we get in the car to leave the hospital after being discharged and Savannah starts vomiting. We go on to Donald's house to check out and give the meds the docs wanted in her ASAP. She vomits again and starts freezing running a temp. Needless to say we were admitted. Labs confirm pancreatitis and xrays show no damge was done during ERCP. This mornings labs show her T. Billi double what it was (probably from the main bile duct being manipulated) but the amylase and lypase (not sure of spelling) had dropped back down to almost normal! We will start slow with feeds today and if tolerated hopefully we can progress and be home by Monday. She really feels terrible. She is on IV pepercillin and lots of fluids so she will perk up soon. The doc immediately wanted to put her on the antbiodic gent. but I protested. I am scared of that one. Savannah has had it so much with no effects thank God but I don't see i=why using it unless she needs it. We agreed we would wait for the labs and if she needed it she could have but I did not allow them to start it. We found out she didn't need it! Please continue praying for us and remember those closest to my Papaw. He passed away last night. I love you all-

Wednesday, November 16, 2005 6:21 AM CST

Well this is just lovely. Last night Savannah started running a low grade fever and having diarhea. I thought for sure Chapel Hill would want to reschedule. Not! They said to bring her on in and that she would probably need to be seen because of it anyway. Oh the joys of traveling 245 miles with a child having diarhea. Guess I'll throw in a ton of extra clothes and towels!

Tuesday, November 15, 2005 3:25 PM EST

Hi everyone! It's me again! Didn't expect to see another update so soon did ya now? I love having my computer access back again! Savannah is doing well other than the whole eating issue and getting very tired quickly. She is all set for the trip to Chapel Hill tomorrow. She will get to spen d the night at Ronald's house tomorrow! She will have a nultra sound (out patient) tomorrow afternoon to mark the spot for the biopsy. I hope the biopsy doesn't "llok the same a ss the last one" but will have a change one way or the other. I can't stand the waiting on her to get sicker or to get better. Just get on with it. Don't get me wrong, I am thankful for her being "stable" or whatever you want to call it but my anxiety gets the best of me sometimes. Speaking of anxiety, I had a terrible week last week and this week wasn't starting off great either but yesterday I knew someone had prayed for me. Thank you to whomever it was because my anxiety is under control now and I am acting like a normal (mostly) human again! We should have Savannah's results by 5:;;00 pm Tursday as long as the sample gets to the lab before noon. The procedure is scheduled for 8:00 and it will only take a couple of hours so it shouldn't be a problem. The biopsy itself only takes like 5 minutes but the stent replacment can be copmplicated because of her size. The same doc that only does adults will be doing this again for us. I ask our co-ordinator if there had been any calls for Savannah a liver yet and she said not that she was aware of. She said she is at the top of the list so it's kind of weird but we are all thankful for the extra time for her to get stronger. I also told or reminded rather our co-ordinator that we would be leaving Friday despite Savannah starting to run a temp. About 24 hours after being under Savannah starts running temps up to 102 for 3-4 days. We chuckled as we talked about not letting the nurses check Savannah's temp Friday before discharge. Well, I will update again Thursday after I get some results so probably early/late evening.

I love you all and please pray for our safety and Savannah's as well as guidance for the docs.

Sunday, November 13, 2005 10:15 PM CST

Yeah! Finally, I have my computer up and running and doing what I want it to do! I am so glad and for all of you who chack on Savannah there will be more updates now! As for those of you who have emailed me I am still trying to go through all 500 so give me a little more time!

Savannah's labs were ok. No major changes just ALT & AST back up some, the others made a few bumps but no major jumps or drops, so thats good. We head to Chapel Hill Wednesday for admission. She has an ultra sound scheduled for Wednesday and ERCP with biopsy on Thursday. Hopefully we will get to head home sometime Friday. She is totally aware of our trip. She asked me about 3 weeks ago or so when were we going to the hospital again. I was shoked but knowing how knowledgable my daughter has become about her hospitalizations I told her in about 3 weeks. Of course I had to break it down for her to 21 long days. She immediatley started telling me about all the positive thinggs that would happen. The gift shop, the cafe', Wendy's... well thats about it except for the play room but only if she doesn't have an IV pole (her words). I am beginning to think that the pole is what bothers her the most about them. I told her that they would let her go to slepp and put it in while she wa sleeping so it wouldn't hurt. She continued on about the pole. Tonight she was detemined to get packed for the hospital and reminded me that I could not put another tube in her nose while we were there. She will never get over that one.

Oh, I almost forgot! Santa Claus!!!! Savannah did wait until Monday to go and visit but Santa emailed us to let us know to come after 6pm so Mrs. Claus would be there and gave instructions on how to be a VIP if there was a line. Luckily there wasn't! I dressed Savannah in the cutest one piece Christmas outfit that my mom made her. She was so excited and it ended up being a family aafair. Stan met Savannah, EJ, T, Bree & myself there. We all wannted to either meet Sanata & Mrs. Claus or just share the moment. Well except for EJ. He knew Game Stop was right behind Santa! We talked for a very long time and really enjoyed the visit. Savannah had my type up a letter to Santa. Below is a copy of it. The wonder in her eyes and her whole being is so refreshing. We walked all around the set looking at every detail. Savannah would gasp everytime she saw something new. She just loved it! Sanata was very generous and comp us a picture package and even had the photographer make one for himself! She also received a candy cane, a bell from one of the reindeer and a reindeer beanie named Rudy. We finally leaned about how they found out about Savannah's transplant. They said on Chriistmas day, after Santa was up all noght delivering presents, they were headed home to Florida and happen to pass a newspaper stand. Mrs. Santa saw the headlines and wondered if by chance it was Savannah. They bought the paper and tada! I can't wait to decorate. Especillay now with a bigger house! We can actually set up a tree and not have to put any furniture in storage!

Tonight Savannah and I made cheesecake brownies. As you all know she is highly allergic to eggs. I always crack them into the bowl and let her stir. Even if she touches them she will have a reaction. I turned my back while she was stiring and she says, "Momma, I did lick the spoon." My first thought was to say panicing No Baby! It will make you sick!! Oh gosh, that's all she heard all her life so I didn't say a word. I just said was it good? She said yes and then I told her maybe we should wait until we cook them to eat them. She said OK? 20 minutes later she is vomiting. It wasn't even a real lick. Just a tiny bit. Oh well. Poor thing. She wouldn't go to physical therapy last wek. She started crying and saying it would make her very very very tired and that it would hurt. I called and cancelled and tomorrow I will only let her stay for 1/2 an hour and see if that helps.

EJ had a really good week last week in between me having to force him into the things he needed to do to make it good. But non-the-less it was good.
I love you all and will update again soon. Here is Savannah's letter to Santa:

Dear Santa,
We hope you have great day. Dear Mrs. Claus, we hope you be good! Thank you for bringing me my Dora tent last year. I LOVED playing with it while in the hospital. Thank you both for praying for me and sending me emails. We moved to a house that has a chimney so you won’t have to use the door this year. If I hear something I will wake up and see who it is. You will have your sleigh with the toys! I have been waiting for Santa and Mrs. Claus to come to the mall again. I saw you going to the mall on tv and was jumping up and down and squealing!
This year I would like an Etch-A-Sketch, a purple monkey, a Dora scooter and a Barbie piano. I really like reading letters. Would you please say Ho Ho Ho with your beard on? I did see a train track that I would like to have. I would also like any kind of food because now my liver can have anything it wants. I would like to swim in the ocean with The Little Mermaid.
I think my brother EJ would like to have a pirate ship. EJ needs a snorkel and goggles to go swimming. EJ needs something to draw on. He likes to draw Spider Man. EJ needs a train track too.
Thank you so much!
Love,
Savannah
www.caringbridge.org/nc/savannah
2005

Friday, November 4, 2005 8:15 PM EST

All good things must come to an end, right? No, I'm not talking about being forced to give up broadband for a phone line but Savannah. The past 2 weeks have been totally amazing! No vomiting at all! She has ate like a pig, I'm talking 3 of the big boxes of Cheerios! That and chewing pink bubble tape with her sunkist! The staples in life you see. No naps during the day, running, actually trying her best to run and playing and laughing just like any other child! It has been so wonderful! Even her some of her motor skills improved! She can now draw a straight line horizontal and diagnol! She can stay pretty much in the lines while doing a maze even though she is still using her right and left hands. As I said, all good things must end. I noticed 3 days ago she was changing. The next day she took a 4 hour nap and slowed on her eating. Yesterday another 4 hour nap and even less eating with vomiting last night. Today there has been no eating & early morning naps. Yes, I enjoyed the last 2 weeks totally. I had forgotten what it was like. You know, to enjoy life without the huge black cloud hovering. I was actually going to call next week and go ahead with her Make-A-Wish thinking once again that maybe just maybe she won't need another liver after all. I keep waiting for God to heal this one. I thought Savannah was doing so well that we would take our well deserved vacation and take the risk of missing the perfect liver but alas, the cloud is back. I realized how much her health effects my whole being. I am trying not to let the dread and fear completely over take me. The move has been great for all of us. Especially Savannah. She has been so sick in our old place and to her this is a "safe" house in that she hasn't had anything but vomiting so far. I pray the pain for her in our new home will be minimal.

This is a story that is precious and must be accounted for. I will retract for those of you who didn't know Savannah last November. Before her transplant we had to be cautious about germs. Not because of her immune system being compromised but because anything that changed the way she metabolized put her at risk for permanent brain damage. Thus Savannah was limited when it came to crowds. Savannah was 4 years old and had never been to the mall to see Santa. November 2004 Mom, Savannah & I were going to the mall for something. Probably Sears and when we got there we realized that Santa was probably there. We sought out his throne and sure enough there he was with Mrs. Santa Claus. There was no one else around. No line no kids sneezing snot into there hand then wiping the hand rail no anything that looked dangerous to Savannah's health. We were excited and decided if Savannah wanted we would allow her to visit Santa. She was very shy and I didn't think she would but she agreed. That little girl even sat in his lap and talked to them! The previous years we had a wonderful Santa who had passed away and now rides his Harley in heaven so I wanted to talk to the new Santa to get to know him the way I had our old one. In our conversation I told them this was Savannah's first visit ever to see Santa. I then explained that she was waiting for her gift of life and they said they would be praying for us. We left very happy with the new Santa and his addition Mrs. Claus from Florida. But Mom and I had a precious new memory as well. Savannah received her new liver a few weeks later at our hospital 4 hours away. Our local newspaper ran Savannah's story on the front page Christmas Day. The headlines read, “Girl Gets The Greatest Gift In The World!” Somehow, Santa and Mrs. Claus saw the paper and got our email address from it and emailed Savannah wishing her well and sending their prayers. Several times this year Santa and Mrs. Claus have emailed Savannah saying they hoped she would be well enough to come see them again in November. She has talked about Santa all year and the past week I have been telling her that soon Santa would be at the mall. I knew he was arriving tonight and I also knew the crowd would be unreal. I had decided to skip seeing his arrival in person and tell Savannah Monday that Santa had came. We would then go after lunch when all the other snot nosed kids were still in school and we would have time to talk with them. WELL, News 13 had other plans. I did not realize they would be showing his arrival live on TV and guess who saw it! Savannah of course. It was a camcorder moment but it was in the closet. She started jumping up and down screaming “There’s Santa, there’s Santa!” She then looks at me and says very firmly, “Mom, Santa will see me tomorrow.” I tried to explain that if we go tomorrow there will be a line and if we wait until Monday we can talk to them etc. She would not hear of it. She has since been distracted and has not mentioned it. Tomorrow we will see who wins the battle!

Thank you all for stopping by and for being patient with my slow updates. Savannah has labs Monday and we go the 17th for another ERCP and biopsy. Please continue to pray for us. Ej is doing some better but still needs our prayers. I love you all.

Sunday, October 30, 2005 5:47 PM CST

Hi everyone! It's me, Renee' again! As you all now know we have been moving and my computer has been sitting in a corner just waiting for internet service/attention from me again. As some of you may have found out my charter.net account is no longer active. I hope to have all my internet/email issues settled soon but there is so much involved in moving. So, I want to give a quick update on Savannah. Last week was so awesome! It was neat because I seen the change in her. I told my mom one evening that Savannah had played so much all day, the sparkle in her eyes was back and it was like God had taken her worries and sickness from her to allow her to be a normal happy, giggly child full of life! She was that way all week! It did my heart so much good to see her this way. We all LOVED playing with her. During this time her vocabulary increased and the pronunciation did as well. She was being a little monkey and climbing to the top of the couch and jumping on our bed. (shhh! don't tell daddy! It's our secret that I let her so this!) Over the weekend she started eating! She is now eating anywhere from 1 cup to 3 cups of cheerios a day!! That is all but hey, cheerios are good for you and oh yes, the pink bubble tape has started again but at least she is learning how to spit it out instead of swallowing it! Her labs Monday looked just as good! With the blood clot already effecting her WBC & Platelets I really expecting them to be even lower. Her platelets came up from 88 to 155 and her WBC went from 3. to 5.! That was so awesome to see. The biggest shocker? Her ALT is 19!! You heard me 19! Her AST was 40 bu that's ok. Her ALT hasn't been this low in forever! Her GGT & Alk Phos also came down 300-400 points each. T. Billi is 2.6. CO2 is normal again and all the other number were about the same. I feel so blessed.
Savannah & EJ are LOVING our new house. Heck Stan & I are too! We doubled our square footage and the kitchen is so big! I love it. Central air and heat... oh, we are so blessed!! We obviously were not looking for a house but you know how God works. He knows what we need, when we need it and always supplies even when we think we know it all and don't need Him. He just steps in and handles it all.
Please pray for EJ. He is having a terrible time. We go see the doc again tomorrow.
That's about it for now. Thanks so much for being patient with me while we move and just remember this , No News Is Good News. I will always have someone update if Savannah gets bad, gets the call or anything major happens. Believe me I want all of you praying when these things come & I will let you know! I Love You all and come back again!




Renee' Loftis
~ www.reneeloftis@yahoo.com while in hospital
~ www.reneeloftis@charter.net while at home
~ www.caringbridge.org/nc/savannah updates on Savannah

Sunday, October 23, 2005 5:45 PM CDT

Hi all. This is T. Renee' asked if I would update for her. She has been busy moving. Well, we have all been busy moving. Savannah and family have moved to a house on down our road. Bree and I are beginning to move into Savannah's old house. What fun. Savannah has really become a "big girl". Her bed is in her own bedroom, yes her room is big enough. Tonight she will get to sleep in her own bed in her own bedroom. Renee' is worried because of the tube feeds. She has been looking for a baby monitor with a TV screen, so that she can actually see Savannah and know when she is ready to get up or whatever. E.J. is definitely happy. His new bedroom is about 2 or 3 times the size of his old one. He can really spread out now. Anyway, Savannah has been doing really good. Monday, she went on her first field trip and had a wonderful time. The school went to Ripley's Aquarium in Gatlingburg. I was priviliged enough to have the day off so that I could go with them. It was really neat. Although, we do have to go back, we did not see the sharks. Savannah goes for labs in the morning. The docs decided that she could go every 2 weeks now, to give her arms a break. That's about it. Just keep praying for us. T

Wednesday, October 12, 2005 6:44 PM CDT

I feel like a broken record but here we go. Mondays labs were not all that great. Savannah's GGT & Alk Phos have doubled putting them near 1000. Her WBC & Platelets have dropped. Platelets were 115 Monday and are 88 today. How do I know what they were today? We spent the morning in the pediatricians office. Savannah has the croup. She will not be transfused because it would only be a temporary fix. May a few hours to a day and then the platelets would drop again. The fix is a transplant. She still complains off and on with abdominal pain and in general is tired all the time. Today she started her increased dose of steroids (3 day run) and she hasn't became "mean" yet - Thankfully. She usually does really well though. They have made her hungry!! This evening I fixed a cheese sandwich (1st ever), pancake, cheerios, saltine crackers, burrito (1st ever) & penut butter all at her request! It really was fun. She never asks for anything to eat so I enjoyed it. She actualy ate 4 saltines, about 2 teaspoons of cheerios and 1/2 teaspoon of peanut butter. Not bad for Baby Girl! Of course, to keep from wasting the other food, I ate it. Geez and I wonder why I'm gaining weight.

Please pray that she will get her new liver soon. If her platelets continue to drop at this rate she is headed for some major complications. Also, as with the first transplant please be in prayer for the donor family...

Everyone else is doing well and holding their own. Thanks for checking on us and we love you all!

Thursday, October 6, 2005 6:43 PM CDT

Ok I updated around 6pm but I forgot to submit my update. I'll try again.

Finally after waiting all day with no phone call I decide to call. The scan Savannah had shows no thrombosis with her portal vein being small (could be caused by a clot). The quality of the scan was poor possibly due to the previous surgery's. Blood flow was decreased but no abnormalities were noted in regards to other vessels, veins, etc. That is really could. It is safe to say Savannah doesn't have a complete thrombosis preventing her from a second transplant. The tech recommended reapeating the ultra sound and invasive studies if the docs were still concerned. So, the tests haven't really showed us anything concrete. The docs are going at it like she does have a thrombosis just because it was seen on the ultra saound. I am going at it that God has removed the clot and answered another prayer!

My scan shows that I am a match! But I am not an ideal match. Since they think Savannah has a thrombosis she will have to have a cadaver donor. The volumes I would be giving her are to small. An LRD (living related donor) would be very risky for her. It would be a true maze and puzlle to try to use my veins to construct a new portal vein. (if she indeed needs it) With a cadaver they can request the protal vein and any other veins they might need to use for reconstruction. The doc who is making the call has not seen the scan himself personaly. The report was read to him via telephone. He will make the definate call after he sees the scan. I was told I could go ahead and complete my testing but I figured why keep running up a hospital bill if I'm not going to be used. If, God forbid, Savannah is ever put status 1 then the docs could go on ahead and use me. The rest of my workup could be completed within a day or so if needed.

We got home last night and we rested today. EJ has a doc appt tomorrow and Savannah has physical therapy. I will start Savannah back at school on Monday. She has really missed school and her teacher. Thank you all for your continued prayers. No matter how discouraged or disappointed I get I know God is still working!

FRIDAY OCTOBER 7, 2005

Savannah had her own plans as usual. Thursday evening around 8:30 she started running a fever. It has been 101 all day even with rotating Motrin & Tylenol. She would not have made it to school or physical therapy anyway! The last time she had anesthesia she ran a fever but this one is staying higher longer. Hopefully by Sunday it will be all low grade to normal again. Love you all & thanks for stoping by!


SUNDAY OCTOBER 9, 2005
Savannah's temps are still lingering although they are staying below 101. The highest she got was 101.8 w/motrin and tylenol. With her it can be scary because you can never be to sure what might be causing it. This weekend she has been complaining more often of pain in her abdomen. To the eye it looks like her belly has gotten bigger. I may have to start measuring. Her nutritionist suggested it anyway because her abdomen has gotten so much bigger but her weight hasn't increased that much so she is concerned with muscle deteriation and weight loss.

We had put off Aunt T's birthday party until yesterday. Even though Savannah still was feeling well I wanted to give T something she would remember for a life time becuase she is so special to me. Friday night I bought t shirts. One for T & the other for Savannah. Friday I took them and had a photo shoot of just the 2 of them done. The pics are absolutely beautiful & I will share them as soon as I scan them. Savannah is always such a trooper. The only complaint through all of it was once she said I'm tired. The rest of the time she was in my lap or buggy sitting quietly watching all the busy people around us. She never pitches fits or complains or acts like us adults do when things are not going our way. She is an inspiration!

She has slept all evening and is currently running low grade temp. I ask her if she was going to feel like going to school tomorrow and she said YES Mommy. I will be glad to go back to my school! No matter how drawn back she may be at school she loves it when she's feeling well. Too bad we have labs in the morning. Maybe they can get us in and out.

Tomorrow is Daddy's birthday! She has been very excited about this also. She loves giving people party's!

Thanks for stoping by and thank you to everyone who is continuing to support our family!

Tuesday, October 4, 2005 5:56 PM CDT

Savannah's tests are scheduled for 8:30 am Wednesday. I know...it is very frustrating but we had to inpatient to get it scheduled and thats the 1st available. She has had a fairly good day until this evening and then the vomiting began. After that she fell asleep and is still. I tried to get a day pass to go to the mall or movies but becuase of insurance they had to stop doing that. We were some what encouraged by one doc to just leave and come back. They will never miss you he said. Well, the hugs bracelet wouldn't allow us. I couldn't get it off of her and an alarm would sound with this tracking device letting secirity know exactl ywhere we would be at.Well,I got around that problem but the medicine timing didn't workout. Hee hee I tried.

Please keep Haley's familyin your prayers.The funeral is Wednesday and I so wanted to go.Please sign their guest book and let them know you are praying for them. www.caringbridge.org/ga/haley

I love you all and thank you so much for your prayers.

Monday, October 3, 2005 8:35 PM EST

Just wanted to let everyone know that we have had a really good day considering. The test were not able to be ran today. They will happen tomorrow at some point. Savannah wil be put under with local anesthesia to insure perfect pictures of her arteries and veins. We have been graced with the company of Tracy since around 2:45 pm and had lots of fun. Savannah has reqally loosened up with her and laughed a lot AT Tracy!! Savannah is holding up well. I told her last night that we would be coming down and she always amzes me at her braveness. Her main concern was getting an IV. Thankfully they haven't put it in yet and won't until tomorrow I assume. We will hang out here until we have results and a plan in place. I was able to find out today that there is hope. It just all depends on how big the clot is in diameter and length and where it is exactly on what can be done. I am very hopeful. I am just frustrated because it seems like things just don't want to smooth out. It's always something and Savannah is only a child. I want her to enjoy life to the fullest. I will update tomoorow as soon as I know anything more. I love you all and thanks for stopping by!

Sunday, October 2, 2005 9:55 PM CDT

Our caring bridge friend Haley from Tenn is now in heaven. She has fought a long hard battle and now has no pain. She can run and play without any pain at all. Her voice is now entertaining our Lord. Please visit her page and sign her guest book.

www.caringbridge.org/ga/haley

Thursday, September 29, 2005 8:45 AM CDT

The child at Chapel Hill who was Status 1 got their liver this weekend and is doing great! Another prayer answered! Thank you God!

Savannah's ultra sound shows she has a blood clot in her portal vein. Please go to this page for an explaination of what this means.
www.merck.com/mmhe/sec10/ch138/ch138e.html

Her spleen is 2.5 times normal size. You can feel it very easily. I can't believe I didn't notice it sooner. I guess I am always so focused on feeling of her liver which can actualy be seen it is so big. But yeah, her spleen is just as obvious. Our trip went well until on our way home. Savannah got very sick and the vomiting lasted for about a half hour. It exhausted her and she slept the rest of the way home. I will have my results back in a week or so. Please continue to pray for my entire family. This journey can be so hard. EJ is still having a hard time as well. Thank you for stopping by and please remeber us in your prayers.

Monday, September 26, 2005 12:13 AM CDT

I want to give a HUGE thank ou to everyone at Franklin Academy in Wake Forest who participated in the Sweet Shop for Savannah! These guys raised over $600 for us!! That is a great start towards our second transplant fund! Thank you all so much and may you be richly blessed in return.
September 20 Abigal Victoris was welcomed into the world. Avery, Savannah's donor, now has a healthy happy little sister. Please pray for Avery's mom and dad as they go through the adjustment.
In the last week there were 2 children who came into UNC Hospital with what seemed to be a virus. It is liver failure and they are both Satus 1 (top of the organ donor list nationaly) but have to have it SOON or they won't make it. Please please keep these families in your prayers.
Remember little Mason? Savannah's PICU buddy who was being treated for cancer? His mom called and he is currently cancer free! Thank you God for another answered prayer!!
Savannah has had a pretty good week with minimal vomiting! She made 2 different appearances for a local charity event and did great! School is still going well and she really likes it. We are having to consitantly work with her at home on social issues regarding school. She and I have 3 appointments Wednesday so pray for traveling grace. Aunt T will be taging along this time! Thank you T.
EJ has been having a hard time so pray for him. His doc has made some adjustments in his meds so hopefully he will be back on track again soon.
This is an odd request but if anyone local knows of a good boarding kennel for our Rocky please let me know. I would rather use one that I can get a refrence on than just pick one. We will need it for when we get the call so I need to go ahead and make arrangements ASAP.
One last thing. With Savannah's 1st transplant we had several people who stepped up to organize fundraising for us. This time Franklin acadamy is the only one. We need your help. Financialy this is a difficult road and will be even more so during the transplant. If you would like to help us by organizing a fund raiser please give me a call. Or if you would just like to make a monetary donation use the info at the top of the page. If you make the donation through Eblen it will be tax deductable. Just be sure to put FOR SAVANNAH LOFTIS. We can also use phone cards, gas cards for Sam's club or grocery store cards to help with food. I know God will supply. He always does!

Thanks for stopping by and I love you all!

Friday, September 16, 2005 11:54 AM CDT

O sleep, sleep! Wherefore art thou sleep??
Yeah, no more midnight meds, at leeeast for a few days anyway! I can have myself in the bed by 9:15 if I want to and yes I think I will be! Savannah's Tac finally got up to 13.6 last week. We are now doing same dose in 24 hours just every 12 instead of 8. The docs want her level to be 10-12. 15 and above this far post tx is considered toxic. We mad this cahnge on Monday afternoon. Monday morning we had labs and they overall have stayed the same or improved. On Thursday whn we got her tac level it had dropped back down to 6.4. Geez. Nnext weeks will determine if we have to go back to every 8 hours or not. I personally think the big jumps have to do with it being suspension form instead of tablets. The tablets can no be given by g-tube so I would have to force it but then again she may need that consistancy to help with her oral oversion anyway. The last time we did oral meds (it was a tab that dissolved on her toungue) she puked. So I will expect that for a while if we decide to try that route. We will see.

More great news! We got the exception points and Savannah is now #1 in the region. With Savannah's 1st transplnt she was #1 also and it took 14 weeks and 2 days. Who knows when the call will come.

Even more great news! I have begun my workup to see if I am a match. This insurance business is complicated. I will try to explain it. My insurance will not cover me to be a donor. Savannah's insurance has donor coverage, meaning they will pay 100% for the designator/assigned donor. They will not cover any expenses in locating a donor except for the designated donor. In other words, if I am found not to be a candidte then I will be responsible for the expenses of all the workup tests. If I am found to be a match then Savannah's insurance will pick up the tab. For that reason I am having the test that usually rules you out as a donor (CT scan) first. It will be the 28th, the same day as Savannah's 9 month post tx checkup. If I am ruled out as a match then someone else can be tested and the same will apply except that if they are not found to be a match the bills will be forwaded to me. If they are found to be a match and donate then Savannah's insurance will cover the testing. Make sense? Otherwise we (Stan & I) are responsible for all the expenses of anyone who is tested.

Savannah has had a fairly good week. Her tummy is very slowly starting to go down. Wednesday she vomited 4 times and ran low grade fevers. School is going better. She has now memorized 3 memory verses! It makes me sooo proud every time she does! She oinly has 2 more to cath up with the other kids. God is still protecting her from illnesses. One child has had high fevers, vomiting, diarhea and another has had mono. That is just in he class and Savannah has not caught it! As with the 1st tx if she is sick when we get the call we will have to turn it down. Also, our trip to Disney World is being put on hold AGAIN! We could go on ahead and go but we would have to list her as inactive and we might miss the perfect liver. Crazy I know. Savannah talks about her "wish" almost everyday. Hopefully she will sail through the transplant and be healthier than ever and truely will be able to enjoy Disney. That is my "'wish".

Thank you so much to everyone who has mailed Savannah a birthday present and those of you who included EJ. THANK YOU! It means more to me than you will ever know that you are thinking of us. Please continue to keep us in your prayers and thanks for coming by!

Friday, September 9, 2005 2:22 PM CDT

At 9:45am this morning I am in a fundraising meeting for Savannah's school when my cell rings. I look at the caller ID and see that it is our transplant co-ordinator. I had left her a long detaled message yesterday abbbout Savannah's tac level being high and how the vomiting is getting worse. I ask her to check with the GI docs to see if there is anything at all we could do so I had been expecting her call. I excused myself from the meeting and answered.
She says, "How are you?"

I say, "I'm OK."

She says, "Well, your gonna be a lot better in a minute!"

I knew then and asked, "We got approval?!"

She says, "YES and I will be listing Savannah with UNOS today!"

Oh, my goodnes. If I could explin that moment. Tears welled up in my eyes, I said Thank You God the battle is over! The relief and the feeling of this burden being lifted was unreal! I was on cloud nine for a few hours needless to say! Now I am trying to remember everything that worked and made things easier the first go around so we can be better prepared. We are doing like we did with the first transplant and requesting exception points to get her higher on the list. We will have the approval/denial in a few days. Tuesday will begin the living related donor process! First we will need approval from my insurance for me to be a donor. If they deny me then I will use Savannah's insurance! Her insurance will cover the workup and transplant for one person. In otherwords they ill only work up one person. If the person isn't a match then oh well. They won't test another. That is why I am trying with my insurance first. If I am not a match I know of one other person who wants to be worked up and they can use Savannah's insurance. Please be in much prayer.

I was asked today if Savannah could stand another transplant. I at first was shocked that someone would ask me that then appreciated so much the openess of her question. I answered her truthfully and want ttto remind everyone else or just answer the same question that is in all of our minds.

The doctors have said that if Savannah has complications like she did with the first transplant she won't make it. If it is a typical transplant then they don't see why not. It will be hard but she could do it. It is a reality that we may lose Savannah but if we don't transplant her we will for sure. The road she is currently on will only get worse. I pray that I can be her donor. I do not want another child to die although I know God is in control. I just remember how hard it was on me the first time. Regardless of which way things go Savannah is in God's hands and He doesn't make mistakes.

I love you all and please please continue to pray for us.

Tuesday, September 6, 2005 1:52 PM CDT

Now I have to back up. I have been working on this update for 4 days now! Everytime I would start on it various circumstances have interfered. It is now Tuesday and I do believe I will be able to finish! Thanks for having patience with me!

Thank you to everyone who has been praying for my health. I have been recovering from a case of pneumonia and rejoined the living Friday only to be wishing for bed by 11:00 am. I am doing better now and my energy is coming back slowly. It is very hard to take care of yourself when you have others that need you. Thankfully, it seems as if the antibiodics Savannah is on have protected her. We did have an interesting evening on Wednesday. She had been vomiting as she does very 5 days or so but then she started running a temp also. That is confirmation of cholangitis. Tylenol would not bring the temp down so I got permission from Chapel Hill to give Motrin. It brought it down to low grade. Chapel Hill had told me to bring her in. So my very weary body packed the suitcases and loaded the car with my ever so eager to join me mom. Before hitting the road I checked her temp one more time and it was normal! So, I looked at my sis and said, "Should I call and try to get out of this trip?" She naturally said yes. So I call and talk to the attending GI and she was ok with us staying home but if Savannah started running a temp again we had to go. She hasn't as of today, Saturday and my bags are still packed. I am hoping to unpack sometime today. I wasn't sure how I was going to make that trip being so sick but God worked it out for me. Savannah's body is more than likely building a slow resistance to the antibiodics and with her labs not looking so good she is probably having these minor flare ups of cholangitis. I know it will be soon and she will have a severe case sending us down the mountain regardless. Her labs this past Monday looked a little worse than the week before. Her tac level is finally where the docs want it but with her history it will continue to fluctuate I'm sure. Her hair breaking off is finally starting to slow down and you can tell that is growing. She now cries every morning not to go to school. She says she is afraid of all those other kids and with an attitude informs me she will not play on that playground. I think they are so loud and rumbunchus that it scares her. She's use to things being calm. So she sits alone off to herself during play time. It is so sad but as with everything else this to will take some time. Except for that she loves school. She is behind most of her peers as expected but a lot of them are now turning six. She will catch up.

I do have one other thing before I tell you guys about her birthday party. I cannot go into great details right now (mentally I am too tired) but please pray about Savannah's 2nd liver transplant listing with UNOS. There have been some things in the works and I am constantly trying to find a way but last week something happened out of the clear blue that may just be what God ordered. Isn't funny how sometimes we fight against something with all our might but then when it happens your eyes are opened just a little bit and you then see the good? So please pray for God's will and my patience for His timing! LOL

Kimberly is the owner and founder of a company called All About Party’s here in Asheville, NC. She had read the latest article in The Asheville Citizen Times wrote by Susan Reighnhart on Savannah and was touched by her story. Kimberly is one of those kinds of people that have a wonderful heart but acts on it. Her company specializes in children’s character parties and she knew after reading Savannah’s story that she wanted to use her company to help put a smile on Savannah’s face. She called me up wanting to have one of her Princesses come and visit with Savannah. I was thinking of a day that would be good and mentioned that her birthday was coming up. Now I was just thinking how neat it would be to have the princess come to Savannah’s party but Kimberly instantly said that she would be honored if I would let her throw the party for us. She recognized that that would take a burden off Stan and I. Not that throwing a party for my baby girl is a burden but during this stage of her life it would have been. It is hard to plan anything for our family much less a get together of any sort. So the planning began. Every detail was planned for me. The only thing I had to do was send a guest list and birthday list to Kimberly. Even the cupcakes for Savannah’s school were baked and delivered for me! I literally had to do nothing. Thank you Kimberly. We didn’t even meet Kimberly until about a week before the party. We4 spent a couple of hours at McDonald’s with her daughter Jordan and her best friend Stephanie. They had a really good time getting to know Savannah while escorting her on the playground. We just spent the time talking about anything and everything and of course Kimberly received her special requests from Savannah, which included a Princess cake, balloons, piñata, orange drink and cupcakes with pink icing and sprinkles for her school. They all were delivered as promised. The Friday before the party Kimberly brought Savannah’s cupcakes to her school along with a Cinderella dress, gloves and shoes for Savannah to wear to her party. My whole family was so excited. We had been talking about the party and really getting Savannah excited for a while. Kimberly would email me or call me and would leave little hints implying that this party was going to be like no other. When she told me that Savannah’s carriage was going to be a limo I knew we had no clue what she had planned and we really didn’t know what to expect.

Saturday morning our friends from Wake Forest came over to spend some time with us before the party. I then found out there were several of our family members who were going to meet the limo and follow us in. Everyone wanted to experience it with Savannah. When it was time to get Savannah dressed we took pictures and I was really nervous. I guess Savannah felt the vibes and she just started bawling her eyes out. She didn’t want to wear the dress and didn’t want to go anywhere! I had to get everyone out of the house so I could calm her down. The dress and shoes stayed on but the gloves were history! We arrived at Rose’s parking lot in Weaverville about 15 minutes before the limo. This was good because all the family had some social time but bad because Savannah really thought something bad was going to happen. A few of us took turns walking her around the parking lot and keeping her away from everyone else. That helped but once she seen this huge long white car pull up her eyes lit up (along with the rest of us) and I think she forgot all her fears. When the white super stretched limo parked 4 princesses climbed out. Tinker Bell (she was the cutest), Jasmine (EJ goes to school with her), Cinderella & Sleeping Beauty. Savannah didn’t know what to think. Up until that point she only wanted Aunt T and myself to ride with her. I was able to convince her to let EJ, Britney and Gabriel join us. T held Savannah in her lap in between Tinker Bell and Cinderella. The Princesses weren’t use to limo rides either so we all enjoyed it. On the ride to the party Savannah was given a gift from Kimberly. It was a custom ordered crown, “magic wand” and charm bracelet with the first charm a simple rectangle with the word Princess on it. I cried. My Baby Girl was so beautiful and that moment was so special. EJ & Gabriel loved their seat. Right above their heads were the controls (buttons) to everything from the temperature to the radio, TV, to the lighting. They both loved the ride. In the bag I had with me I happened to have a Sunkist and mountain dew that Tracy had just bought us. Well, here we were in this elaborate limo with a bar so I had to put it to use! Savannah and I drank our soft drinks in style using wine glasses! It was fun!

The drive leading to the Barn where the party was had been beautifully lined with balloons and windmills. As we pulled closer to the Barn there were bubbles everywhere and all of our friends and family standing outside to watch Savannah’s grand arrival. It was… so exciting, surprising, overwhelming, beautiful and any other word you want to use! I popped out of the limo with my camcorder before Savannah so I could film her getting out. It was a precious site. Wearing her Cinderella outfit, crown, pink sash with Princess on it, and her magic wand in one hand and faithful Pinky Bear in the other! Everyone was so excited to see her and I was just wondering where Kimberly was and what all she had planned for us! To tell you the rest of the party in a shortened version Savannah first wanted to change into her regular clothes, which we did in a beautiful farm style bathroom. On the way we saw the magician, face painter and animal balloon maker. That was the only time we saw them! We were so busy with everything else we didn’t have time to visit with them. We saw all the tables decorated with Princess paraphernalia and the gorgeous cake. After we changed we were ushered to Savannah’s seat to make an animal bowl from scratch with clay along with all the other kids. Brown’s Pottery in Arden donated their time, services and supplies to give all the kids a keepsake. Kimberly chose a craft because of Savannah’s love for Arts & Crafts. Before we started Kimberly introduced herself and the Assistant Pastor from a local church prayed. Thank you to whomever arranged that. I believe I know whom but want to give credit where credit is due. Having Savannah’s party begin with prayer could not have been more appropriate. About ¾ of the way thru making her bowl Savannah looks at me and says she is getting tired. Oh Dear I thought! So Aunt T escorted her outside to a beautiful gazebo filled with more presents that all of Savannah’s Christmas’s combined! I finished her bowl and then joined her. I can’t even begin to tell you all the gifts she got but she did get everything on her list and more! Thank you to everyone for making that happen! And then what a BIG surprise! There were gifts for EJ, my husband and myself! There was Bath & Body Works goodies, cash, book bag, a t-shirt, a comforting book, gift certificates for dinner, movies, fun depot and then Stan and my personal favorite a total of 90 minutes worth of messaging at a local Spa! We can’t wait for that one. At first Stan protested but I insisted we experience that one together!

After all the presents it was time for the cake! Savannah blew out the 5 candles with 2 breaths and took a sip of orange drink from a goblet. She then chose her piece and we sat for a while. She had never had a real birthday cake! Every year I would spend all this $ and time ordering the special ingredients, weighing every grain of the special baking mix and then calculating just exactly how much protein was in it and then praying to God she wouldn’t eat too much of it putting her over the limit thus causing her ammonia levels to rise, etc. You guys know the old story and worries. This year there was none of that. Just get a regular cake and let her at it! She is still very uncertain of food and not eating well. She sat with her piece of cake and would ever so gently put her fork in the icing, pull it out, look at the tiny spec of icing on it and then lick it. She did this for a good long while until it finally looked like she ate one small bite. Then it was time for the piñata! It was out near the horses stable in a tree and all the kids loved it! After that Savannah wanted to eat more of her cake! She really took to the icing. The cake had been thrown out but she was promised a piece of the leftovers at home. Needless to say she fell asleep in the car on the way home but at midnight that night me Baby Girl was indeed enjoying another piece of her first real birthday cake. And by the way, it was delicious!

I haven’t been in touch with Kimberly yet to know everyone involved but I want to thank everyone from the bottom of my heart. Thank you for the memories. Savannah may grow out of her toys and the cake is all gone but the memories will be with me forever!

Now for a Tuesday September 6 update. Savannah had labs this morning and they looked better than last week, which was surprising considering how big her belly has gotten the past few days. I thought for sure there was very little bile flowing but her T. Bili is down from last week! She vomited at school today and then on the way home but is back to her normal self and was very talkative about school today! Apparently she is learning how to play hop scotch with some of her class mates so I am assuming that she is at least being with them instead of sitting by herself during play time. Her hair is finally starting grow faster than it can fall out and gives me a hard time trying to keep it from bushing up everywhere! It’s very cute and a good problem to have!

I will now elaborate a little more on the whole listing issue. Medicaid dropped Savannah due to income limits. This simply means that we now have co-pays and she is covered by Health Choice which is still state funded. She is only allowed five million in coverage until she is 18 and I pray that she will slow down on her medical expenses or else she will reach the limit long before she’s 18. The good news is although Health Choice and Medicaid are both state funded programs they are separate. Last Thursday Chapel Hill sent Savannah’s 2nd transplant funding request into Health Choice. I want to say please please pray for approval but I know better than that. Please pray for God’s will. We should have their decision this week. I will go for now but will return to my regular updates now that I am feeling better. I love you and thank you for the tremendous support.

Sunday, August 28, 2005 8:45 PM CDT

Savannah had an awesome birthday party! As my Aunt said, "It wasn't a birthday party, it was an experiance!"

I am sick and do not feel like giving a full update. Savannah is fine. Hopefully she will have a good day at school tomorrow and her labs will still be improving. As soon as I'm up to it I will give full details! I am running a fever tonight and am fearful of walking pneumonia. I tried to get in with the doc and Friday and failed. I will try tomorrow. Please pray that God will pritecet Savannah from hat ever this is. While running a fever I am highly contagious.

Tuesday, August 23, 2005 10:19 PM CDT

I am sure some of you are wondering what my last Caringbridge post was all about. Last week I received a phone call from the owner of a business that has various clients. She had learned of Savannah through the grapevine. One of her clients came in and she found out he was a transplant surgeon. She mentioned Savannah to him and apparently he was intrigued because he asked that I give him a call. I thought wow. This is pretty cool but kind of odd at the same time. Anyway, I did call this certain doctor and he was a very pleasant person to speak with. I told him Savannah's diagnosis and he said, "Yep, she needs another transplant plain and simple." I read to him the reason for medicaids denial and like everyone else he was appalled. He knew the lady who gave us the denial and said she is "Dr. No". He asked me what happened when Savannah's team at UNC appealed. I kind of stumbled over my word and said I did the appeal. Chapel Hill never offered to get involved and with this being the only Trans Plant Center hat I have dealt with I didn't realize they could. He said, "Oh, yes. Any time one of our patients gets denied we automatically step in and file the appeal. I can't believe your doctors didn't do this for you." By then I was wondering why myself. I mean here this stranger is ready and willing to step up for Savannah but her own team has never mentioned it? So he continues with his frustration and tells me he would be more than happy to take on Savannah. That would entail us switching transplant centers and putting her through the whole evaluation process again. He promised he would get everything set up so we could expedite her quickly and have all testing done in one day. All I needed to do was send his office her medical records and they would set the date. He promised me and I quote, "I can promise you one thing. We will apply for funding approval and if we are denied we will go after them like a pit bull." Well, needless to say I was very impressed. Someone ready to fight this battle for me and he had the expertise to do so. I thanked him for his time and took his info that I would need.
When I got off the phone I started becoming overwhelmed with emotion all over again. Asking God what do I do now? I know he puts people in our lives for reasons but I just didn't know what He wanted me to do with this new opportunity. I posted in hopes of getting some emotions released and prayers for myself. By midnight last night I had my answer. The answer is to stay right where we are. This other center has only performed 2 liver transplants on children the ages of 1-5 and a total of 9 liver transplants on ages 1-17. That means Savannah would be the 3rd person of her size to receive a liver transplant at that center. UNC has performed 25 liver transplants on children the age of Savannah and a total of 90 on children under 17. That makes a big big difference. Not to mention Savannah has went to UNC her whole life. They know her there. Yes they may not have handled the whole appeal the way they should have and yes there are other things I would like to change but that is the situation no matter where you go. The experience and personal knowledge means more than a pit bull right now. UNC is working on getting Savannah listed. They may be taking the long way but they are. It isn't like she is being ignored.

To those of you on the outside it probably seems like an easy task. Taking with doctors and making decisions but as her Mom it is totally different. All I see when I think of her being listed is my baby in the ICU fighting for her life. I do not see hope all I see is fear and pain and scary uncertain days. It is hard for me to back off and see that this will be different in it's own way. It isn't the same experience we had before. Even if she does get sick again at least we have been through it once already and kind of know what to expect as far as tubes, wires, vents, X-rays, tests, and chaplains. You can never prepare yourself for death or near death experiences with your child. You just can't. And being through it with Savannah makes me want to protect her from it now. Even though I know she isn't well at the moment, she is up and walking, not on a ventilator with more tubes and lines than you can count. I don't want to have to go through that again to get to the other side. My fear is what if there isn't another side except Heaven for her. Can I let yet another child go? Down deep I know God's grace will be there and carry as it always does but when I am faced with these major decisions all I can see and feel is fear. Fear of the unknown and the known. So thank you to everyone who has helped pray me through this one. savannah's labs are looking better. Today she had a pretty bad day. She left school early and spent the afternoon vomiting again. No fevers yet just feeling really crummy. I am praying she will feel great for her big party Saturday! I love you all- Me

Monday, August 22, 2005 1:51 PM CDT

I feel as though I am making the decision to transplant Savannah for the first time. Yes, it was elective in a since but others would argue that it wasn’t. Choose a transplant and let her live with her brain intact & with all the risks or live with commas and wondering “is this the episode that will leave her brain damaged?” Is it worse to see her live today to the fullest not knowing that tomorrow she may be re-transplanted and will it be like the first time? If so will she make it? Would it be better to let her live with re-current cholangitis until we are forced into a 2nd transplant, which we inevitably will or re-transplant now while she is strong and able to fight? As with my own mind tossing these back and forth it seems as though others are too, while others are set on what they would do. Which way do I go God. I turn to you because you already know. You know these medical terms that I don’t. You know what it all means God. Even the doctors that are suppose to know admit they don’t. So God, why put this decision on me? To keep me turning to you. If I did not need you I would ignore you and our relationship. Yes God, but I am so weak. I am so tired. The pain from the past and the pain from the thoughts of what the future may hold is unbearable. Without you God I would die. I would have noone and die in my sorrows. Please God help me once again in only the way you can. Guide me in the decisions of this precious life you have entrusted to me. Please God give my mind the respite it so desperately needs. Guide me, patiently, lovingly.

Please pray with me.

Friday, August 19, 2005 6:14 AM CDT

Thank God Savannah only vomited the 2 times yesterday. Her fever finally went to normal aat 2:00 am. This morning it is still noraml so we will attempt school. I will check her temp at snack time to make sure she is holding out ok.

EJ had a great first day! He was so pumped but worried about Freshman Friday (today). He told me he thinks he is going to have a great year! I hope he can keep that attitude! Love you and keep praying for the Baby Girl-

Thursday, August 18, 2005 12:09 AM CDT

All good things must come to an end right? Savannah has enjoyed school all week! Chapel Hill said that with the vomiting being stopped since the new stent was placed that she has been having boughts of cholangitis. The antibiodics have been masking it a lot and helping keep it from being so severe. They said the stent should have been replaced sooner but at the time we had no way of knowing.

After I picked her up from class no sooner did we get to the parking lot and she started vomiting. She vomited again when we got home. She has since been running a fever. Talked with Chapel Hill and of course if she has any more vomiting we have to head down the mountain again.

I just got off the phone with Kimberly who is planning Savannah's party. The invites will go out tomorrow or Saturday. It will be at The Farm - The Gathering Place in Candler, Saturday the 27th from 12:00-2:00. It is going to be a royal ball! Thank you again Kimberly!

Please pray for my baby girl and don't forget EJ. He had mixed emotions about high school this morning!

Monday, August 15, 2005 8:18 PM CDT

TURN ON YOUR SPEAKERS TO HEAR THE MUSIC

Monday, August 8, 2005 11:01 AM CDT

Saturday was a sad day. I finally bit the bullet and let Marlena cut what was left of Savannah’s hair. The hair she had left was about 10 inches long but if you lifted it up above her head it looked like she had 2 thin horns. I couldn’t braid it anymore because the was no hair in the middle. Tears came to my eyes as I watched. The good thing is it will grow back. She says she likes it and that is the most important thing. Today while doing labs she complained of her head being cold so we went and bough a hat to help keep it warm. Bree (my mom) followed suit. Except her hair looks great with the pixie cut. Savannah has so many cow licks on top that you can’t do anything with it. When we got home from labs my dear sister had her hair cut. We are talking shaved in the back so Locks of Love will be receiving around 14-16 inches of brown hair. T you are so wonderful! Will take her some getting use to. She has always had long hair.

In the car after labs Savannah was stung by her first bee. It was a yellow jacket and it got her twice. Left the stinger in and made her bleed. Needless to say the bee is dead and the swelling has went down so thankfully she isn’t allergic to them. I am getting ready to tell her that we are headed for Chapel Hill. I just found out we got a room for 2 nights at the Ronald McDonald House. For those of you who have my cell # and try to call I want you to know it has not been working very well. It will voluntarily turn itself off and then I have a hard time getting it back on. Leave a message if I don’t answer and hopefully I will get it. I love you all and please pray for our safety. I will update again later.

Friday, August 5, 2005 7:57 AM CDT

This week hasn’t been the greatest for Savannah. Monday evening her belly got really big and then on Tuesday & Wednesday to confirm no flow of bile her bowels were white. That still amazes me to see white poo-poo. Her nausea and vomiting has been more frequent also. We were at the store last night, 10:30 pm, doing a bubble gum and orange drink run. She loves to ride in the buggy that has the attached red truck with doors and steering wheels etc. We were moving right along and with no warning she starts vomiting everywhere. That is one concern I have about school, among tons others, A lot of times she has no warning with the vomiting and can’t get to the bathroom. I pray her teacher ill understand and recognize it’s not a virus and try to send her home every time. Next week the doc who is doing the ERCP will treat it like an endoscopy looking for ulcers, inflamation etc. that may be causing the vomiting. It would be nice to know if it her meds or not. As usual Stan & I are very nervous because what always is suppose to be a one day thing turns into several. Please pray for her. Also, I doubt that the doc will put the stints back in and that could be good or very bad. We will see. Please please pray for healing of this liver. We (Savannah’s family) are all ready to breath a little easier and not be on edge so much. It would be so awesome if God would give that to us. It may be a selfish prayer but that is my prayer. So mom & I will go down on Monday and hopefully come home on Wednesday. Thursday EJ has a doctors appointment and Friday is the teacher/parent orientation at Savannah’s school. I will come back for that if I have to. This trip will be a little different in that I can keep everyone updated better because I have a laptop! Yay!!! Thank you so much Tracy for finding Kinfolk. Kinfolk loans lap tops to families with a child undergoing treatment for the purpose of distraction and a way of communication! No more heading to the 2nd or 7th floor hoping no one is on the computer or having to leave Savannah alone. It will be much better! Please remember to email me at reneeloftis@yahoo.com while in the hospital.
Besides all of that Savannah is really maturing these past few weeks. Her perception is super. She doesn’t miss much at all. Her speech is still hard to understand some times and she will get frustrated too and end up saying, “‘I’m not talking.” I am working with her on that. She is also taking on more independence. In the bath she can wash her whole body now and is doing really good with washing her own hair. She will sometimes surprise me by going to her bedroom and dressing herself. She will walk though the living room carrying her dirty clothes and promptly put them in the dirty clothes basket. She reminds me every night to brush her teeth if I forget. She is reading more to me now than I am reading to her. Mostly from memory but sometimes we make up our own stories from the pictures. It is fun. She continues to do her crafts like there’s no tomorrow! She will carry her palette of paint to the table and inform me that she is an artist! I agree. I hate it but I am going to have to cut what’s left of her hair very soon. She only has the long strands coming from the top of her head down the sides. The very middle is gone now. I was wanting to wait until after her school pictures but I don’t think I am going to be able to. I am finding a lot of short hairs on her pillow case now. I’m pretty sure the new is just breaking of as opposed to coming completely out like it first did. Next weeks anesthesia isn’t going to help it any either. Oh well. It will eventually grow back. It’s just so sad because her hair was so gorgeous! That was the one feature about her that everyone always commented on and I don’t want kids to tease her saying she looks like boy.

Please pray for us next week and I will update again soon. Love you all-

Sunday, July 24, 2005 9:15 PM CDT

Ok so I'm back! Thank you to everyone who has encouraged me. That is what this site is for. Please do not write to me if you are questioning what I write unless it is in a supportive manor. I have enough to deal with otherwise.

This is a cute story that is more or less for my benefit to be able to read again in a few years. Thought you guys might like it.

For those of you who are local you know where the Red Lobster off Tunnel Road is. When I go into town I usually take the Chuns Cove Road exit so I drive right by the restaurant. It was remodeled a few years ago and has huge bright fish hanging in a foyer directly facing the road. Well, these beautiful fish immediately caught Savannah's eye and ever since had wanted to eat there. Now all of you know she has never been an eater and before her transplant there was absolutely no way she could ever step foot in that place. She would always say, "Look mom the fish place! I want to eat there!" I would just always say something to blow her off. I mean what could I say? "Umm, sorry honey but if you eat there you will die." So I would be like, "Yeah baby one day, one day." Never even knowing if she would ever actually be able to or not. After she was listed for a transplant I loved driving by the restaurant. When she would get excited almost yelling to me that she could see the fish place I would turn around with so much hope in my heart and say, "You know what Baby Girl? When you get your new liver we WILL go eat there!" Well, after her transplant when we would drive by there she would get all excited and say, "Mommy I see the fish place!" If dad was with us he wold say, "We will go eat there when you start eating. I'm not wasting my money on food you won't eat." If it was just me and her I would say the same thing I did pre-transplant, "One day Baby we will. One day."

Well, special occasions call for splurges. This past Saturday was my mom's (Brie to savannah) 54th birthday! So, my ever thoughtful sister though instead of cooking which is our tradition for all our birthday's, we would take mom out to eat and she loves seafood so Red Lobster was first choice! Yeah, savannah finally got to go to the fish place! She loved seeing all the aquariums and looking at the lobsters. I read the menu to her and she choice "whimp & fwise". Ok I said, shrimp and fries it is! By the end of our dinner she had only attempted the ketchup. Yes the ketchup. They serve it to in the tiny dip dishes and she would take it and lick it. It was to cute. So, she said she likes ketchup. A little at a time is better than nothing at all. She has days where she will eat enough to consider it a meal and then days like today where she hasn't ate anything at all. Go figure. Her poor tummy must just really be messed up.

Please pray for Viesta as she had to take the life support off Frannie today at 4:oopm. Frannie is now in Heaven running and playing and feeling no more pain!

Thank you to everyone who is responding with interest in coming to Savannah's Birthday Party Aug. 27th. If you haven't let me know that you would like an invite. Please do so within the next couple of days. Some of you have requested a birthday list and I am working on one to post here on the site. That will be easiest for me. And of course, if you find something adorable that you think Savannah would love and it's not on the list that is perfectly fine!

I love you all and keep my family in your prayers. Stan and I have had some very trying days here lately.

Friday, July 22, 2005 7:24 AM CDT

Hi everyone. As some of you already know, Medicaid has denied us again. Same reason. She isn't sick enough. I am emotionally exhausted. I have never been this way before in my whole life. My nerves are awful, my mind is a jumbled mess, it is even hard to breath sometimes. As soon as I am able I will get back on the phone and contact a lawyer. I am not able to appeal this one on my own. It will be nice having someone else doing all the leg work thisa time. I had no clue that the first appeal was going to effect me the way it did. Her labs this wek are the same - more or less. Still showing the biliary problems but what I call stable. Stable in my dictionary means her labs are good enough for us to be home.

Thank you to all of you who are supporting me and this journal. I normally don't let people get to me but I guess I'm so emotionally unstable that it didn't take much. I will get back to my old self again I love you all and keep my family in your prayers.

Wednesday, July 13, 2005 10:35 AM CDT

Dear Friends and Family,
As you all know I started this site as a way for you to be able to check on Savannah at your convenience thus saving myself energy from contacting all of you individually. Once again I have “upset” someone by my recent post. I have always used writing as a way to vent but have tried to be careful not to upset anyone who might read this journal. That is impossible. I am not able to emotionally keep going the way I am now so I will be taking a break from posting. Those of you closest know how you can reach me if needed or you know who to contact to find out more info. Of course if anything major happens I will post but other than that I will be resting for a while.

To those of you who continue to support me and my family no matter what - you mean the world to me and have been a great strength during this journey. Thank you and I hope you will continue to love and pray for us.

Savannah’s current condition:
Savannah has ate like a little pig this morning! This is the most she has ate at one sitting in months! A bowl of Cookie Crisp and then a bowl of Cheerio’s! Her medicine’s are still causing tummy issues with vomiting. It is not consistent thank goodness. She has vomited 6 times in 3 weeks. Hopefully that will not get worse. She has started having diarrhea. I will increase the lactobacillus to see if that helps.

She is continuing to lose her hair.

She has grown 2 inches since February and has maintained her weight of 40-41 pounds.

She loves her new glasses and says she can see better.

She bruises very easily and still tires out pretty quick.

Her love for reading is as strong as ever as well as her craft making.

She will be turning 5 August the 28th. Her party will be August 17th from 12:00 - 2:00. If you would like an invite please email me ASAP as we need to get them out in the mail. Thanks again Kimberly for doing this for me! You’re the best!

She will start Kindergarten August 15 at a private Christian school going only half days.

August 9 she will be at UNC-Chapel Hill to have an ERCP and more studies conducted on her biliary system.

As always, I love you all and thank you for loving my family

Tuesday, July 12, 2005 3:57 PM CDT

Well, once again you never know what a day will bring! Monday Savannah had her routine labs and her T. Billi & D. Billi are headed back up, but that is the nature of her biliary atresia wannabe liver! Hence the need for a 2nd transplant. Her ALT & AST look great! Her GGT & Alk Phos are still out the roof but other than that things are “stable”.

As you all know from my last post I have been emotional abused by this woman who represents Medicaid and has the power to approve/deny anyone medical services provided by them in regards to transplants in North Carolina. That is a fact that bothers me deeply. It is not just about my daughter Savannah anymore. It is about everyone living in North Carolina, who is covered by Medicaid (which by the way is the same insurance all you who are employed by the state have). If you live here you have paid taxes since you first started working in the real world. Part of these taxes pay for this insurance to be provided for children whose families can not afford to pay out of packet premiums for private insurance thus insuring that all children in NC will have the medical care they may need. Over and over again I hear the same phrase from Medicaid and private ins, “Yes, we will cover a transplant if a Doctor deems it medically necessary.” Well, Savannah’s doctor has but still this woman is abusing her power to give and take life by denying my daughter the medical care that has been deemed over & over again necessary. I thank God that the decision is out of her hands but at the same time am still frustrated. If this woman had anything but the almighty dollar on her mind and had half a heart she could have prevented all these unnecessary appeals and added burden to my family.

As some of you know we went public with this story via newspaper a week ago. Last week our local news station was ready to air the story Monday evening. The following is the chain of events since Monday morning:

Monday am: 13 WLOS phones me to tell me they can’t air the story because Mrs. Wicked Witch of the east will not comment.

Tuesday am: our tx coordinator calls and says that Mrs. Witch had left her a voice mail saying she had received information from one of Savannah’s family members stating she still had citrullinemia in her liver and wanted a copy of Savannah’s complete medical file.

(First off the ball isn’t even in her court anymore-let it go)

Our coordinator calls me, we discuss the situation. Our coordinator returns Mrs. Witch’s call & explains to her she will have to contact our metabolic expert to explain how citrullinemia is still alive in Savannah’s cells but absolutely is not in her liver- well duh, if that were true how could she be on a regular diet???

It seems this woman is still, continually with all her might trying to show a good reason for Savannah’s tx funding to be denied again. Even though it isn’t up to her anymore.

Mrs. Witch tries to start an argument with our coordinator by trying to blame the lack of funding on hospital policy. Thankfully our coordinator is not childish like Mrs. Witch and didn’t give her the time of day.

I get home from taking the kids to the park and 13 WLOS has called saying Mrs. Witch emailed them a consent form for me to give her permission to give a statement.

Now I ask you why didn’t she do that Monday? Why did she first say no comment and refuse to offer any such consent? What has been going though her head to make her change her mind? Is she going to try to run me into the ground over this when I’m not even a medical expert but just a mom fighting the best way I know how for my daughter? Or is she a little nervous? Only God knows.

I will be handling the consent tomorrow and I guess the story will air sometime this week. I had just started to “deal” with all of this and get my mind to relax. I will continue to focus on my family and not let this Witch eat at me. I will be strong with God’s help. The past week has been harder on me than actually going through Savannah’s first transplant. The mental torment from this woman has greatly disturbed my whole thinking towards people and my trust. But I will prevail!

I am planing on continuing to fight for my daughter and hopefully put up a road block so other families will not have to travel this path. We will have the hearing officer’s decision by next Thursday the latest. I will not live in torment until then. I will live each day knowing I am only human and am doing what any other mom would do. If the answer is an approval then we will all THANK GOD! If it is another denial... I will continue to fight, but not until then.

Please pray for a little boy who has/had OTC (another metabolic disorder) who is receiving part of his Daddy’s liver today!
Remember Larry? The 14 year old heart transplant? I talked with his mom and he is doing terrific! He is still in the ICU and has been for 3 months but he is slowly taking steps to get out of there!
Jordyn is continuing to thrive and run around like a normal 4 year old should! (Liver tx Sept 2004)
Amber is having more infection problems. (Kidney tx, Savannah’s PICU buddy)

So that’s about it for now. Savannah is still very immunosurpressed, still smiling and still conquering the little things in life! She is still here!

Thursday, July 7, 2005 10:30 AM CDT

The hearing is over and we are still at the hotel. I wanted to update before we left. All I can say is it was absolutely terrible. The rep for medicaid is very cold and quit honestly argues very well against a mother with no law degree. But, anyone without a degree would see she contradicted herself more times than I can count. We didn't get a clear picture of where medicaid stands. This is a few things she said that left us wondering...

Savannah's 1st transplant wasn't suppose to happen but then she figured well, we've got nothing to loose so she approved it even without the "data" she was suppose to have and her words were to the effect "out of the goodness of my heart". Supposedly we got the funding for the 1st transplant out of the goodness of her heart. She said that a second transplant for ANYONE is not something that medicaid will pay for period. Then she said if Dr. F will get her listed and get the exception points then we will approve it. She said she wrote that in a letter. Well, we both read the letter but that info was not. Then she says, there is no data (1st tx for citrullinemia failing and requiring 2nd transplant & being successful) supporting that Savannah would even survive a 2nd TX, thus we are wasting organs. She just went on and on. Then had the nerve (my CLASS family will get a kick out of this one)to say that UNOS would not let us list Savannah without a PELD of 15 or higher and that you could not have a transplant without that score. (bunch of bull) Tracy was with me and I thank God for that. After about 45 minutes my mind just started to shut down. I couldn't take anymore of this woman saying if my daughter was retransplanted it would be a waste of organs. In other words my daughter's life is a waste. To her I guess it is. She said it would not be fair to approve Savannah for funding. She needed to get sicker, but even then would they approve?

It was just terrible. Thankfully the hearing officer who will make the decision did her job and stayed nuetral. She will inform me in writing in 10 days.

I love you all

Thursday, July 7, 2005 11:28 AM CDT

Good morning all. I have just spoken with Bree. They will be heading home within the hour. Please keep praying is all I can say. Bree said that the woman was very hateful, "Medicaid does not have to pay for another liver, and It would just be a waste of organs." Can you believe that? They have 10 days to make their decision at which time Renee' will be going to the Supreme Court if the deny again. She is just 4 and barely getting started. There is so much for her to see and do. Why want they give her the chance? Thanks again for everything. Love T

Wednesday, July 6, 2005 1:30 AM CDT

Hi everyone. I just wanted to remind everyone that Thursday is the hearing. Renee', Savannah, Bree, and Marlena will be leaving in the morning to go to Raleigh. Please help us pray for safe travelling there and back. Also, they are all stressed, so please pray for that. Please pray that God's will will be done in this and everything will be ok. I will be here working so I can update the site when I can and when I hear anything. Thanks again for all of you that are out there supporting us. We are very grateful. T

Monday, June 27, 2005 7:40 PM CDT

Today was lab day! Savannah’s number’s are happy number’s. Not normal number’s but numbers that allow us to stay home so they are “happy numbers”! Savannah is still having her vomiting issues. Just out of the blue it happens. Nothing triggers it that I can see. I first thought it had something to do with every time I entered her G-Tube but last night at 10 till midnight it happened again. I will be so glad when J gets back to UNC!

Overall she is doing well. Still no eating. After she vomited last night she wanted some cheerio’s so I fixed her a bowl. She ate 2. Today she wanted curly fries from Arby’s and she ate 1, smelled of another. Still getting tired pretty easy but her weight is stable and labs looked OK in that regards.

Sorry the update is not as good as usual. I am really nervous about next week for the appeal. Thank you so much to Rhonda’s family who is footing the bill for our hotel! What a total surprise and blessing! God is good. Thank you also to Janet & Linda who are supporting financially as well! God Bless you all!

I have a lot of work to do this week to finish getting prepared but have several useful resources that will make the process easier (hopefully). Again. I apologize but my mind is not very “intact” right now. I love you all and please pray special prayer for a family facing what is probably the most difficult decision of their lives. Per the families request I can not go into details but God knows.

Thursday, June 23, 2005 7:01 PM CDT

Home sweet home! For 24 whole days now! A new record but I am afraid that it may ending soon. I will get to that later. First I want to tell a few stories about our stay at home.

Last Friday I took the kids to the library (they want to go everyday!) And one of the many many many books that Savannah checked out was The Ginger Bread Man. As most of you know we have a ritual at bedtime. We never go to bed without at least 6 books to read! That night and Saturday night & Sunday night we read The Ginger Bread Man. Savannah loved it! So on Monday after labs we came home and made ginger bread men. We let them cool for a few minutes before decorating them. While I was making the homemade icing (I am so proud of me!) And seperating it our into different colors I look at Savannah and she has both arm laying across the pan with the ginger bread cookies.

I ask her, “Baby Girl, what are you doing?”
Baby Girl, “I’m making sure they don’t run away!”
She then proceeds to jump up from her chair yelling, “Oh, no. Oh, no They can’t get in my big girl bed!” as she slams the bedroom door to keep them out!
She then proceeds to keep a watchful eye on the cookies with her arms on top of them.

It was so cute and a wonderful memory for me as well.

Overall she seems to be doing really well! During this past week she has excepted the fact that EJ is not going away and has decided to take the attitude “‘’If you can’t beat ‘em, join ‘em”. She will now play with him on occasion and allow him to do small tasks such as fix her a drink. That’s progress but I can’t help and wonder how much of it is typical brother sister stuff. On her playground she can now climb the ladder without her little legs shaking from weakness and can also climb the steps up the deck holding onto the rail instead of literally climbing on all fours. She is still scared of the bath tub and every once in a while still gets nervous about driving up or down our hill.

June the 15th we had a great surprise! I had errands all day and didn’t get home until the early evening. There was a message on our machine from Joe, Avery’s father. (Our donor family) He was going to be going through Asheville and wanted to get together. I was so bummed because I knew he had already came and was headed back to Goldsboro. Then the phone rang. It was Joe and I started apologizing saying how sorry I was that I had missed him. To my surprise he said he had just gotten to Asheville! So we met and went to local park so Savannah could play and not feel “put on the spot.” It was so good to see him again. The last time we saw him we were still in the early weeks of post-transplant and under a lot of stress. He was grieving his daughter, selling/buying a house and very emotionally upset as well. So, it was really nice to visit again. I am still planning a visit in July and pray that Savannah will be ok health wise so she can go too.

I will be making reservations soon for a hotel in or close to Raleigh for the hearing on July 7th. Monetary donations would be greatly appreciated to help with gas, food & hotel room. Depending on how many family members are going we may need 2 rooms. Please put the hearing on your prayer list and let as many praying people/churches know about it. We unfortunately are not going to be able to get private insurance for her. I did find a great company but her co-pays for her meds alone will be over $500/month. We just can’t afford it. We need medicaid to give funding approval desperately.

For those of you local Savannah will once again be in the Sunday edition of the Asheville Citizen Times paper. If you are not local and would like to read it you can access at the web site: www.citizentimes.com
Susan Reinhardt is the columnist. More than likely it will be in the Living section. If you don’t know Susan personally you are missing a treat! Check out her web page:
www.susanreinhardt.com
Thanks agin Susan for everything and being a great friend!

Now for the bad news. Monday, Wednesday & today (Thursday) she has vomited. Each time has been after I have accessed her g-tube for meds w/ 1-2 oz. Pediasure. Within 2 minutes of giving her the mixture it comes right back up. Last night there was a small amount of blood in her urine. Her labs from Monday were what I call “stable”. Everything pretty much stayed the same either droping or gaining 5-10 points. The only notables are her T. Billi was 2.9!! Her Co2 is normal!! The Alk Phos jumped 100 points (bad) and her H & H are dropping which we expected being on Bactrim. It does that to her. She has 6 more days of it before switching back to Cipro. When we do that her kidney’s will become unhappy again. What a trade-off. So my personal opinion is that the cholangitis is lurking (vomiting) and that the Bactrim isn’t working as well as the Cipro did. Just a thought. My right hand woman at UNC is on vacation. COME BACK J COME BACK! I would have already called her to discuss my theory but she’s gone. If I call & talk to someone else I’m not sure how they would react but I know if Baby Girl vomits again I will have no choice but to call. Hopefully we won’t have to head back down but you never know. Keep us in your prayers and we love you all!

Tuesday, June 14, 2005 7:44 AM CDT

Today we celebrated labs by going to the local pool! I know some of you have concerns about her swimming in pools but I OK’d it first! The chlorine is enough to kill germs I just have to careful about the g-tube. Water does seep in the tummy but the tummy isn’t sterile BUT Savannah is immunosuppresed and it is after all, Savannah! So we enjoyed about 2 hours of playing in the water. EJ stayed a little longer & is totally burnt. No sun screen. Uh Oh. Savannah of course was covered. So here are her labs from last Monday & today:

ALT 52 ~ 34 (normal!)
AST 58 ~ 45 (just a little high but ok)
T. Billi 5.2 ~ 3.4 (still high but what a drop!)
D. Billi 4.3 ~ 2.9 (high but dropping)
GGT 898 ~ 710 (very high but a great drop!)
ALK PHOS 880 ~ 677 (high but keep on dropping!)
CO2 still 18 (low)
WBC 8.7 ~ 6.7 (great!)
Hemo 12.3 ~ 11.2 (low but normal for Baby Girl)
Hemat 35..8 ~ 32.2 (also low but normal)
Platelets 360 ~ 273 (great)
BUN 29 ~ 25 (high)
Creatinine .8 ~ .7 (great)
Sodium 134 ~ 137 (still low but climbing!)
Potassium still 4.6 (please don’t go any higher)
Tac 2.4 ~ pending (very low- we switched to Q8 dosing again)

Everything looks great compared to the past couple of months. Could there maybe just maybe be some healing going on? Only time will tell. Her CO2 is still low. She is getting 50 plus ounces a day so I know it’s not dehydration. It is probably a metabolic/kidney thing. We will just have to watch it and see. We went for her kindergarten shots this morning. Not sure if she will have any resistance but she got them non the less. (Polio & TED) Mentally she is doing the best she has done since the transplant. Her fears are easing even more and if you look at the “pool” pictures I posted online you will see that for the first time she is smiling when I point the camera at her! No more crying or hiding her face!

RN J was just as excited about Savannah’s labs as I was! We are just thanking God! I needed her to ask the chief surgeon doc a question for me so she had to call me back. When she did she told me she went on ahead a shared Savannah’s labs with him. Bah-humbug! He didn’t share our excitement. He analyzed them and continued to discuss the future... he knows what lies ahead (unless God intervenes). Judy & I agreed we were going to live in today and be thankful that TODAY Savannah labs look “better” and she is HOME! That is exactly how my7 mom and have talked about Savannah’s situation lately. No, we do not know what state of health Savannah may be in tomorrow or even this afternoon but for right now, this very moment she is alive, home, and smiling! We will enjoy this moment with her and not worry our selves to death with what if’s and when this happens and so on. Stress can and does kill people ya know and if you are so worried about the what if’s you are going to miss out on many many happy moments..

Well, I got shot down today with the first private insurance company and not by the company them selves. I will be working on that some more this week. I am starting to slowly prepare for the hearing and have found some good resources to check into to. Believe it or not I am going to try once again to get my yearly check up scheduled. If I don’t have it done soon it will be my 2 year check up!

So that’s about it for now. Please keep the happy mail coming. Savannah LOVES it and it means so much to me to know that people haven’t forgotten us. Thank you Thank you for ALL continued support and please please, keep it coming. We sure need it.

LOVE YOU ALL!

Tuesday, June 7, 2005 10:45 AM CDT

Once again I find myself apologizing to all of you for not updating Savannah’s page sooner. It is very hard on me sometimes as her mother to “relive” what she is going through even though I desperately want all of you to know her current condition so that prayers can be specifically prayed and so that you guys don’t worry. At the bottom of the page are 3 email addresses. The 1st is mine. The 2nd is my sister’s. Email her anytime if there is no update. She always knows what’s going on and would love to converse with you guys. The 3rd is my mom’s. She will do the same for you but she is a lot like me in that it is hard for her to keep retelling the current “story” over & over so email my sis Tiffany a.k.a. “T”.

Savannah’s doctor released her last Monday. He came ion said her labs still looked bad but they weren’t getting worse. He said he wanted to give us a couple of days at home but that we would be back. So Monday evening when we got home I unpacked and re-packed knowing we would be heading back down after Wednesday labs if not sooner. This is so tiring but I seem to be getting use to life at club med and all the traveling that comes with it! Doesn’t mean that I like it just adjusting. The following is her lab results from the day we were released, the following Wednesday & yesterday:

May 30 June 1 June 7 NORMAL
AST 103 99 58 20-60
ALT 77 98 52 10-25
T Billi 4.4 7.7 5.2 0.0-1.2
Co2 17 18 18 22-30
GGT 402 807 898 11-48
Alk Pho 551 926 880 150-380

So as you can see we were pleasantly surprised by June 1st (Wednesday) labs. Her H & H also had cam back up to low normal so we didn’t need another transfusion nor did we have to head back down to club med! I was confused with what to do with myself! I had planned on begging Chapel Hill to let me bring her back in on Thursday after EJ’s graduation but that was one battle I didn’t have to face. WOW! So, Thursday Savannah, Grammy & I went to watch my 14 year old say good riddance to junior high! Oh dear. A freshman in high school and a terminally ill 4 year old is a curse! Even so, I thank God that I am home facing the teenage years instead of being cooped up in the hospital! Friday I took EJ to Fun Depot as a congratulations gift courtesy of some very special girls at ACA who gave us gift certificates there. EJ loved it and it was nice to have mom & son time alone! Saturday we went to the local lake/park and fed the ducks while helping Savannah with her physical therapy. Stan & I were just trying to make life seem normal and not take for granted being together as a family for a change. It is amazing how your outlook on life & people change. I know God is shaping our lives through all of this and I am very curious to know what kind of people we will be in 5 years. When I saw the lab results yesterday I wanted to get so excited but am gun shy! Even though she is still acidic and her billi labs are still high her LFT’s look great! No fevers, no vomiting since Thursday and her blood pressure has been normal for 5 days! We are now up to 4 cans of pediasure a day also! The vomiting wasn’t from cholangitis. It is either from being adrenalin deficient and/or a tore up tummy from all the meds. We increased her steroids and started prevacid along with lactobacillus. It seems to be working. She still isn’t eating orally. She does get hungry but as soon as she gets a whiff or small taste it seems as though it turns her tummy and she can’t eat. She started bawling her eyes out yesterday because she wanted to eat so bad but couldn’t. All I know to do is give her pediasure to curve the hunger pains. Her color is much better as you can see from the above picture. Her eyes are still very yellow though. The distention in her tummy has went down some too! We have made that a game saying her belly button is coming out for mom to tickle it. She will get so excited and say look mommy my belly button is back in! Her spirits are very good!

Things are more normal now than they have been in a while. Her labs indicate cholangitis is right there just waiting to spike the fever that will send us back to club med but we are praying that the anti-biodics she is on will keep it at bay for a while. I know she needs to get sicker to get Medicaids approval but as her mom I am so enjoying these precious days.

Speaking of Medicaid, Rep. Charles Taylor wrote a letter to the state on Savannah’s behalf. No guarantees as this matter falls on Gov Mike Easley’s head. We may have to send him a letter... or 2? I have sent in my info and filed an informal appeal. I will go to Raleigh in person for a hearing. If that doesn’t work I will file a formal appeal and take it to court. I thought that is what I would do and not even fool with the informal appeal but I discovered the formal appeal will take much longer so we will pray the informal appeal will be enough. We are still unsure of Stan’s insurance position. They tell us one thing and then the next week it is something else. Very frustrating but I am not going to let those things interfere and take my joy from “today.”

Thanks for the huge response in helping contact the Congressman. I knew I could count on you guys! Thanks to all of you who are continuing to send Savannah happy mail and support for Stan & I. We have the week off from labs and as long as no fever or vomiting kicks back up we will be home all week!
I love you all and continue to pray for us. Please continue to pray for Larry who got his heart 3 weeks ago, Mason who is still fighting cancer, and Jordyn who was admitted last night with EBV and funky liver #’s. She is a year younger than Vanna and is 9 months post liver transplant. I spoke with Avery’s dad yesterday (our donor family) and little Austin is scheduled to arrive via c-section Sept 15th.

I love you all!

Wednesday, May 25, 2005 8:35 PM CDT

How quickly things can chnage overnite. I was all calm and peaceful but I shouldv'e known it was the calm befor ethe storm.

First I want to thank everyone who has sent Savannah cards, gifts, stickers, etc via snail mail. She just oohs and ahhs when opening her mail and says, "Mommy will you please read it to me?" It is so nice to have those happy moments during the day. A huge thank you to everyone at the Fullerton Gentics Center. You guys are great and have been an unreplaceable support for us! Eblen Charities, thank you thank you for giving us hope when there seems there is none! And thank you to those who are conitnuing to help lift the financial burden. May God Bless All Of You!

I want to ask all you something. Do you honestly love Savannah? If you do then I need you help. Medecaid has denied her again on having a liver transplant. In there "nice" way, they say she isn't sick enough. Chapel Hill is fighting with al there guns loaded and has sent more than enough documentation, info of standard of care & Savannah's most recent medical finding's that ALL support her in need of a new liver. In all actuality medicaid is playing a game. Who can hold out the longest, Savannah or them. They are hoping she wioll die and they will not have to pur out the funds for another transplant. Well you know what? They don't know who they are dealing with and word of mouth goes a long way. I need all of you who klove her to bombard Congressman Taylors office with letters supporting Savannah and expressing your disgust at medicaids decision. Lots of you remeber 2 years ago when we did this in regards to medicaid not wanting to pay for her life saving metabolic formula and it worked. We can do it again!

If you would like a sample letter then please email one of the contacts at the bottom of this page. This is the link to Congressman Taylor which will give you the address, phone number and any other info you might need. Please send the letters to the Washington, DC and Asheville, NC addresses or by email.
Representative Charles H. Taylor

Now I must go. Savannah has vomited 6 times in 4 hours. She sin't able to keep her anti-rejection meds down and is most likely getting dehydrated. Mom is going with me to UNC, If we go to Mission they will transport via ambulance and I don't want her to have to go through that again. I love you all and please contact me if you have any questions, ideas or just want to encouirage us!

Sunday, May 22, 2005 10:14 PM CDT

Savannah was able to come home Saturday afternoon. Turns out her picc line had slipped out of the superior vena cava and headed up her jugular. It was pulled out and xray showed it was now in the subclavian. In English it pulled out of the vein close to her heart that made it a central line and fed itself up a vein in her neck. It is now in a vein just crossing over her chest making it a "fancy" IV instead of a central line. The subclavian is bigger than a brachial vein (vein in your arm) so hopefully we will be able to get 10 more days of anti biodics out of it. Leave it to Baby Girl!

I could go on about all the negative stuff bit I want to tell you about our day. To all of you it may seem typical. To Stan and I, well it was a beautiful day! After morning meds I put Vanna in the bath and had EJ shower. I invited my mom to go to church with us. Yes, we got to go to church this morning! It is risky for Vanna I know but I am hoping she is covered with the IV meds right now. Church was wonderful! It felt so good to be there again. Afterwards we went to the store and bought something for lunch. We went home and grilled hot dogs and burgers w/ onion rings and tator tots. We were able to get Savannah outside and on her tire swing and her swing set! The sun was shining, a cool breeze blowing and all was right in the world. We went for a short walk, played computer games, T, EJ & I played a long battle of monopoly (EJ won), Stan took his brother for a bile ride, and in general enjoyed our day. Savannah did bring tears to my eyes and cause my heart to ache. She was listening to if you're happy and you know it and sang along while dancing. She was smiling the whole time and came to me (she didn't know I was watching her) to proudly tell me what she had just done! I loved it. I hadn't seen my baby do that in so long! She ate some chocolate ice cream and proclaimed she liked it but only ate a few licks. She does that with most new foods. Last week, or whatever week it was that we were home for a few days she ate her first few bites of a hot dog and a taco! She put only shredded cheese in the taco and ate a bite of cheese by itself. First cheese ever! Said she liked it but again only about 2 bites. At least she doesn't have a total aversion to food.
She has been very nervous about her picc. So afraid something is going to hurt it but she is getting mor use to it and mom messing with it. She says, "See! That didn't hurt at all!" So today has been great. After lunch I looked at Stan and said, "This is the way it's suppose to be." He readily agreed.

I love you all and thank you for all your prayers and support! Keep it up!

Friday, May 20, 2005 10:51 PM CDT

Well, it was nice being home while it lasted. I think we set a record for being home the shortest time before a readmittance. 6 whole hours. Her picc line is clotted. Joy. EJ is totally bummed. I am totally exhausted and bummed. Stan just couldn't deal with it and went to bed at 9. So, here we go again folks. Talk to ya soon. Love me.

Friday, May 20, 2005 1:24 PM CDT

Hi all. Guess what? I am so HAPPY!!! Savannah is on her way home. Renee' called and they got the discharge papers at about 12:30pm. Savannah did throw up again today but they still don't know why. Just thought I would let you all know and please keep praying. Love T

Thursday, May 19, 2005 8:45 PM CDT

Hi all. It's Renee' (Baby Girls mom). I am now smelling much better after coming to Donald's House and changin out of my vomit spewed clothes. Yes. Savannah is vomiting now. It could be a tummy bug, don't think it's from the cholangitis because the vomiting is usualy an early symtom and she has been on IV anti-biodics since Monday. So, the only other thing it could be is mom & I got her overly excited. Yesterday and today we heard our baby girl laugh whole heartedly and we love it. She hasn't done that since before December '04. So we would do anything to get her laughing including racing up & down the hospital halls this evening. Mom would pull her in the wagon and I would chase her. Unfortunatelty the halls also have hills. I am afraid the docs won't let us go home until Monday now to make sure she quits vomiting. We were schedule to leave tomorrow and meet home health at my house to get all the IV meds & pump. I reminded them all day that they need to get us out of here earlier to allow us 5 hours driving time. They all said they would.

Asfor her labs evrything is going in the right direction. Her WBC was 26.6 on Mon and is now 14. Much better. Her T. Billi was 5.8 now 3.? Can't remember but you get the point. AST & ALT are close to 70 and so on.

Wednesday they sedated her for her PIC line. They got it in and later xrayed for correct placement. It was in to deep. They backed it out and did another xray. It was short this time. That meant a whole new PIC line this morning. See. you can always back one out but not push it back in. Kind of like us women getting our hair cut. You can always go shorter but you can't glue it back on. So again it was to deep. They backed it out and got it right! Yeah!! This one we can even use for blood draws!

Medicaid has denied me again. My personal assets are over $3000.00. I am soooo upset but there is nothing else I do with them. Stan (dad) is waiting on his appointments to get a work up done. If he isn't a match then we will try to add me to his insurance by getting sponsers to pay for it so I can see if I am a match. It will cost $400/mth for me to be added and then a $3500.00 deductable for either one of us. I'm not sure which way God wants us to go with this but I know I have to do everything I can for my baby girl. It kills me to think I might be a match and all that is standing in my way is money. It would help me so much just to know if I am a match or not. If I'm not then I could focus this energy elsewhere knowing I had done all I could.

Thank you T for keeping everyone updated! Your'e doing a great job and thanks to everyone else who is sending Vanna mail and calling with support and especially the prayers.

Thursday, May 19, 2005 2:14 PM CDT

Hopefully Savannah will get to come home in few days. They have her on the 2 week run of antibiotics through a PIC Line. A PIC Line is a central line that has a connection that is on the outside of the skin. They did an ultrasound and everything looked "fine". Renee' said that they are now waiting for a social worker to come and setup an in home nurse to come and help Renee' with the IV pump. Once all this is in order savannah should get to come home. She is feeling alot better, she gets to walk around the hospital and go to the playroom. She also got some mail from the Netherlands yesterday. Thankyou to everyone who has sent her mail. If you haven't please consider it. She LOVES getting mail. Also, when she feels like it she has begun to reply to her mail. If you want to send it to the home address it is
P.O. Box 57
Weaverville, NC
28787

Again thanks to all for anything and everything that you have done for us. Please keep it up, Savannah's journey is not over yet. It seems to only have just begun again. Please pray that she can continue to do good and that the beginning stages of the end stage liver disease does not progress to much. We need to get her strength back up so that she cna make it through another transplant. Love to all, "T" (Tiffany)

Monday, May 16, 2005 1:55 PM CDT

Hello all. This is T. Just wanted to let you know that Savannah and Renee' and Bree are headed back down to Chapel Hill. They left about 5 minutes ago. Savannah began running a fever of 101.7 last night at about 10. Renee' called the docs and they said to give her some tylenol and hopefully be able to control it until this morning, take her for labs first thing. Which we did except we have been having to give her tylenol every 4 hours. The fever does not want to go away. Labs showed that Savannah is becoming ceptic, she is acidic, and her WBC is 26.6. They do not know why her WBC is so high. It has never been this high before. So they are headed down for a 2 week run of antibiotics and who knows what else because of the WBC. Please keep her in your prayers. Just yesterday Savannah had her first hotdog!!! We begin to make small progress and in the blink of an eye it is taken away. Just keep praying. Oh yes, Renee' went to file for medicaid today. They just gave her the form and said to bring it back when it was completed. Still don't know anything there. Like I said please keep praying.
Love to all,
T

Friday, May 13, 2005 9:35 AM CDT

Just a short update on Savannah.Renee will do a good update later.Much prayer is needed for Savannah and family.Nothing new there. Chapel Hill gave Renee the news yesterday morning that she is in the eary stages of liver failure.More of her bile ducts were damaged and more severely damaged then they knew.A new liver is needed.They cant do more steriods because it puts her more at risk.
You all know the bond of love thats excists between a mother and her children.Renee is working to be Savannahs donor.As I said much prayer is needed for everyone.Thank you.Bree(Vannahs GM)

Saturday, May 7, 2005 9:20 PM CDT

Wonderful news! The steroids are working! Savannah's #'s are coming down and she was noticibly feeling better today! I don't want to say the H word but maybe just maybe we will be there soon. ITonight was a rough evening for me. I left the hospital earound around 7 pm to get the washing done and clean on the room at Rondald's house but I enmded up with almost a full blown migrain. I am feeling better now (3 1/2 hours later) but I didn't get anything done so I will be late getting back to Vanna & Stan in the morning. Stan is going home tomorrow & Marlena will be coming back down to stay with us again. Savannah's nutricionist bumped her feeds up to 5 cans of Pediasure a day so hopefully we can get some meat back on her. When Stan & I did our switch off for showers this morning ( I park the car in the kiss & go lane and he runs down to get it befor e they tow it) I didn't even get a hello out when I went in Savannah's room. She was sitting on the couch and immediately said, "Daddy told me not to tell you that we are making a mother's day card!" It was so funny. I contiued to quiz her but she never would admit who she was making the card for. It was so cute.

I forgot to mention last night that mom's surgery went fine. She is sore but will be better in no time! I will go and lie down now. Love you all and keep us in your prayers.

Friday, May 6, 2005 7:08 PM CDT

Seven years ago today I had the greatest gift gave to me. Twin sons! I felt so blessed that God had chosen me to be the mother of 2! Within three weeks Zack & Luke went home to be with Jesus, Stan & I experianced the horrific pain of going through a burial process and unknown to us God was blessing another family with a daughter they named Avery. God gave Avery to her parents for only what would have been 7 years this month. He let her be born only to die and give the gift of life to other's including our precious Savannah. So I in memory of our twins and the miracle God was putting in place for a few years later... I love my sons and miss them as much today as the day they passed away. Thank you Angi for remembering and calling me to say "Happy Birthday". You don't know how much that meant to me.

Another quickie because Stan & Vanna are waiting upstairs for me. The biopsy showed acute rejection, chronic liver danage & less bile ducts. As RN Jsaid, "It was a Gos Send that they performed the biopsy." According to her labs there was no need for one. Her LFT's still look OK. The only ones that would agree with rejection is the GGT & Alk Phos but when the AST & ALT doesn't rise at the same time you look for bile problems. Hence the stint replacement and all the hyda scans, xrays etc. So, the doc said she could have very well been in rejection for weeks and we not know it. On a scale of 0-9 with 9 the worst Savannah is a 7. She started the IV treatment this afternoon that lasts for 3 days and then an oral taper. If no signs of improvement by Sunday afternoon we will have no choice but to use Thymuglobuin (spelling). That is the one that knocks you immune sysytem completly out. It is also the culprit that contributed to her immediate post transplant problems. During the rejection and the infection the bile ducts are the main target so we assume that even more significant damage has been done recently to the biliary tree. We shall see. At the same time if the rejection has ben the main problem all along then if we get it under control quickly with no complocations we do have a slight chance (this is me really hoping & praying) that the bile ducts can & will heal themselves in time. We are hoping to know within a few weeks of just seeing what happens with her.We also found out my chance (transplant workup) that her iron was way to low so now we have iron supplement, also vitamin K. I am going to have an ammonia level checked in the morning if the docs will hear me out. Stan & I talked for a while with Muenzer and when your liver is failing , no matter who you are, your ammonia will start to rise. Well, as you all know ammonia is what we dealt with before the transplant and the citrullinemia is still in every cell of Savannah's body so her ammonia levels will be more aggresive when her liver is failing. It may still be OK but you know me. I gotta know. Well, I hate to go but Stanm is going to think I disappereared. Thank you for the cards that have been sent. I know it's crazy but no matter how bad she is feeling she smiles while opening her mail & I will do anything to get a smile. She has also been working on return mail! Love you all- Me

Thursday, May 5, 2005 7:17 PM CDT

Just a quick update. Savannah's Hyda Scan showed very sluggish bile drainage but at least it is starting to drain. We will have the results from her liver biopsy tomorrow. Hopefully we will go home Monday. Her skin color is looking so good and today her eyes are starting to lighten up! Her ALT & AST are steadily climbing but are still in the "ok" range. T. Billi is trending down. Alk Phos is 1200+. Mag just will not come back up but prograf seems to be coperating now. Today it was 8.8.

Remember Amber? Kidney transpklant? She was admitted last night. This was her first admission since being released Feb 10. She has a urinary tract infwection and went home this e4vening. I got a pic of Savannah and her together. She is such a cute kid with a personality to match! OK Gotta go. Love you all- Me

Tuesday, May 3, 2005 10:09 PM CDT

It is late and I am so tired but finally got my hands on a computer. There is lots to say but this will have to be the abreviated version. We completed the transplant work-up today. The only thing left is the letter from insurance saying "yes, we will pay for a 2nd liver transplant". As soon as we get that (should be by the end of next week) she will be back on the list.

Good news, her heart is fine the repeat tests showed things are "normal" for Savannah. Some of her branches that send signal to the heart are blocked but her body has found a way aorund it so it is fine and has no pending on snything. What a scare. The weekend we couldn't get anyone to give us straight answers. All of a sudden nobody new anything. They still don't know much and are guessing. Her Doc this morning said, "Maybe I'll let you go home Thursday or maybe we'll wait another week." Geez people. I have a son at home who would really like to know when not to mention the Baby Girl. I stood her up to look out the window Sat night and she says to me, "Show me my house momma I can't see it." I told her we lived in the mountains and I couldn't see any mountains. She informed me they were behind the hills and that is where her house is! She said she was all better and ready to get out of here! She is so cute. Today she didn't feel as good as the past 2 days. Really tired and very weak. Her muscles are pretty much shot. Lots of PT for her when we get home. I am going to concentrate on getting lots of pediasure in her to help with her physical strengeth and get herinto some play therapy to help with the mental strength. Now that I think about it though she is probably stroger mentally than most of us. She is still her brave self that will do whatever the doctors ask her too. She doesn't cry when they dig and fish for a vein. About the only time she crys now is when they wake her from her napping. She is tired and wants those people to leave her alone! They are having to keep a close eye on her blood pressure and she won't sleep in the bed for the cuff to reach. She hates that hospital bed. Her tac level (prgraf) is staying at 4 (needs to be 8-10). They have increased her dosage the past 2 days and it's not budging. Weird. As you all know this medicine is the cause of her losing her hair. I already told Stan is she loses it all I am shaving my head too. Her belly is so big but thats typical for the problem she has. Huge pregnant like belly with tiny arms & legs from muscle depletion. Her skin looks much better but her eyes are so yellow. Her T. Billi seems to be trending down and her liver numbers are trending up. (not good) Pray that we can get her tac level where it needs to be before she goes into rejction. That would not be good at all right now. I need to go now. I am really tired. They had their conf. today about Savannah so we will hopefully know more tomorrow on a coming home date. I really hope it's this week. Sunday is mother's day and Savannah has appearances to make next week (it she feels like it of course). I love You All!
Special thank you's to Tracy & Gabriel for the visit and goodies! Also thanks to Jordyn's family for the care package! Thank you to everyone at T's work for the card!

Please pray for
EJ who misses his family
Bree has gall bladder surgery Friday
Mamaw & Papaw Loftis- very ill
Larry- A1 on the list for 3 weeks now for a heart
Efrin- 10 days old recovering from heart surgery
Precilla that can't leave the hospital because she has no where to go- social worker is trying to find a group home- brain tumor

Friday, April 29, 2005 7:17 PM CDT

What a day! The docs not onhly wore Savannah out but Marlena and I are exhausted too. The Hyda scan today showed no change. T. Billi was 6.7 this morning. She ran a fever and vomited after morning meds. Kindof a crummy day until this evening. For whatever reason she perked up and talked to us, showed interest in eating, drank a juice box and we went to the play room for about 45 minutes. We had the whole atrium all to ourselves! They closed at 7:00 but knew Savannah's circumstances and allowed us to play for a while. Monday Jessica is going to come and let us make cookies, muffins or cupcakes in the rec room. Savannah's choice! She also got mail today. Marlena bought a card at the gift shop and signed it mom, daddy, EJ, mamaw Bree & T. She was so happy. You souldn't believe how she loves to get mail! I will probably go this weekend and by a bunch to send to her from us but I am sure she like getting cards from you all too. The Ronald McDonald House address is at the bottom of the page.

We are not sure if Dr. G will repeat the ERCP this weekend or if it will be Monday. He will shoot the dye in and look for a kink or blockage in the stint. If there isn't one I am not sure if they will pull the stint or not.

Now for the bad news. We sarted this evening doing the tests that need to be done for a transplant workup. She is being relisted for another liver. Regardless if the stint is the immediate problem or not her biliary tree does not look good and she will have to have another liver. When the cheif surgeon found out her bile still isn't draining he started cussing. To some of you that would be an insult but to me I saw it as care. He could have just said OK We relist her but he didn't. He expressed his compasion and care for my daughter. That made me feel good. The bad part is before her first transplant she had good days, now she may not or if she does they are going to be fewer. Also, with a metabolic disorder you can get the exception points. That is how Savannah was listed #1 in our region. This time we get to join the many families that watch their children go months even years of feeling terible and slowly going down hill before getting their organ. IF they get it all. Please help me pray that there would be some way, any way possible that I can be her donor. As you all know we tried everything for me to do that the first go around and it didn't work. There has to be a way other than raising 1/2 million dollars.

So the fund raising is going to begin again to cover expenses and home bills. I'm just not sure when because apparently we are going to be in and out a lot more now but it will come. Anyone with any ideas please let me know. Also, please remember that I can't check my charter email account while here. You have to email me at reneeloftis@yahoo.com. I have no idea how long this stay is going to be. Just pray for Savannah that she will keep her fighting spirit. With her being up and about more today I saw that she is losing her muscle strength again. She couldn't get up from a squating position without lots of help. Physical Therapy will start are Monday. We didn't see the nutritionist or the physchiatrist today... maybe Monday?

Well, gotta go and get back upstairs so Marlena can go to Donald's house for some R&R. Love you all- Me

Thursday, April 28, 2005 8:48 PM CDT

Savannah was moved to the regular floor yesterday evening! Marlena and I don't have to leave the unit every time we need to pee now!! Savannah's last temp was last night along with abdominal pain requiring morphin. Her LFT's are holding their own but her T. Billi jumped to 6.5 today. Remember it was only 5.0 at time of stint placement. Again, her liver doc said and I quote, "No offense but your daughter doesn't follow the book." Her poop is still white, her eyes are completely yellow but her pee isn't almost black now. It is more a tea color so that means her kidneys are working better. She did finally walk a little today but slept most of the morning and afternoon. I did manage to give her a bath and get her hair washed. She is still losing so much of her hair. It is almost shoking when a handful falls out. So tomorrow she will have another hyda scan to see if the bile is draining or not. Geez. She was just OK'd to go back on her feeds today and now she has to be NPO again. She is so weak. We did get a grin or two out of her today despite Dr. K making her cry yesterday and RN J today. They both did it by accident not truely appreciating how sensitive and traumitized Savannah really is. They do now and promised they would be much more careful. All they were doing was trying to get her to interact with them but she obviously doen't want anything to do with them. We will be in touch with a child physcologist, recreation therapy , a nutritionist and some one from speech therapy in regards to the not eating issue. After discussions with the docs, Savannah may end up having tests done to see if something has been damaged during all the intibations and scopes. Savannah wants to eat, feels hungry but when she gets the food to her mouth or after one bite she almost cringes and won't eat anymore. I have no clue as to how long our stay will be but I don't think we will be coming home Monday. The Hyda scan will tell us a lot tomorrow.

I spoke with Savannah's citrullinemia nutritionist today (all her previous docs always stop in to say hi when she is admitted) and said she really enjoyed the article I wrote for the newsletter. They had to cut it because it was so long but like I told her how do you fit Savannah's 4 1/2 years into just 1 or 2 paragraphs? So, my dear sweet sis is taking care of EJ & my mom. They both had doctor appts. today. Mom's gallbladder surgery is next Friday and EJ's was routine. Thank you T- we love you!

Marlena and I have both been blessed by a few of the people we have met this trip. Our spirits and my whole family's for that matter have been pretty low lately. These families have had conversations with us that have shown us the light again. As for me I am slowly finding my peace that I let go of a month or so ago and didn't even realize I had. I don't know what will ultimately happen to Savannah but I do know someone who does and His will is much better than mine or anyone else's.

Please continue to pray for us and the many families dealing with sick children. I love you all and will give an update tomorrow after the Hyda Scan.

Tuesday, April 26, 2005 8:13 PM CDT

I didn't get around to give any updates about Savannah's admission last week when she had her stint removed so I will start there. As I had predicted Stan & Dr. L agreed to let Savannah come home Friday evening. We were to continue controlling her fevers with tylenol. Her LFT's looked great, WBC coming down, and no other tests were indicating anything going on. As some of you know she hasn't felt well the past few weeks anyhow. Saturday was no different. Sleeping a lot and just generally lieing around. Her fevers were continuing. Saturday night she started complaing of lower abdomin pain. Hum.. she NEVER complains so is it gas, cholangitis again? I was very uneasy. Her fever went up of course and as she started falling asleep her breathing became labored and her heart rasing. I comforted myself in that her liver looked great the day before. I tormented myself thinking of a 3 year old girl named Michele who had citrullinemia. Her dad woke up one morning, went to her bed and she had pased away during the night. Michele died from an infection. (nothing related to citrullinemia) I kept thinking of that and driving myself crazy. I got online and found some medical info that calmed enough to be able to sleep in hour or so increments and had decided I would call the pediatrician first thing. I awoke at 6:30 am showered and made a 10:15 appt. They immediately admitted her at our local hospital and Chapel Hill Docs said if her liver #'s started climbing to transport her. Her labs came back & her LFT's were coming down from the previous values. Thay lookedf really good. The pediatrician said OK things looked fine Savannah will stay overnight here & get IV antbiodics. I looked at the labs myself and saw that her T. Billi had climbed from 1.3 Friday to 4.5. I immeditaely called Chapel Hill and the pediatrician hadn't even called them with the lab results. I guess they assumed that the AST & ALT looked good so no problems. I really need a pediatrion that has dealt with transplant and KNOWS what to look for. Thatnk God I have learned. Anyway of course Chapel Hill was as concerned as I was and Savannah was transported via ambulance by a driver who, even though has been to Chapel Hill many many times, got lost. Marlena rode in the ambulance with Savannah & I drove down. I got there at least 1/2 hour before them How frustrating. Savannah was septic by the time she arrived and was taken off the regular floor to the ICU. Plans were being made for another stint or a wire in through the side with a drain bag. Whichever would be safest. Xrays, ultra sounds and a 24 hour Hyda Scan view showed no leaks (thank God) and no obvious obstructions but there are pockets of fluid in various places and her liver was not draining bile at all. She was continuing with fevers and her belly was very distinded. You could actually see the outline of her liver. Aparently this is from the bile buildup. It has no where to go. After the last Hyda Scan this morning (Tuesday) her GI doc came in and they had decided to replace the stint. Aparently either procedure would be very difficult with compliocations. We know the stint worked before so lets do that. I wasn't sure that the only surgeon in the hospital who was willing to do the p[rocedure last time would be willing this time. He had talked with me the night before and was reluctant because of how hard it was to do the last time. Anyway, he agreed. The decision had been made to go straight to the pancreatic duct and place a stint there as to hopefully help prevent the risk of pancreatitis even thought the odds of her gettoing it this time is higher because she had it once already. Then he would place a bigger stint than before in the main bile duct so that we could possibly leave it in for maybe 3 months! She was taken into the OR at 1:30 and returned at 3:00. Half as long as the first stint placements. He was successful and di all that he had said but also made a cut at the opening of the main bile duct to make it bigger. This will help him get in easier the next time and avoid the pancreatic duct altogeter. Last time she was vomiting within 10: minutes of waking up. 4 1/2 hours had p[assed and no vomiting! Yeah we thought. Then it hit. Later we got the pancreatic lab results back and it is normal! We are hoping that she strangled on some flem as she was cought some right before she vomited. The poor thing has been through enough wothout adding pancreatitis to the list. So an already long story short, a team of each dept (peds, gi, tx surgeons. etc) will have their weekly conf. next week and poresent Savannah. They will try to figure out what is going on and her prognosis. Hopefully we can replace the stint at least 1 maybe 2 more times and give whatever is needing to correct itself time to. The surgeon said in adults he wqill replace the stints up to one year but he isn't sure about pediatrcs. So over all I feel like everyone is doing there best at giving her a chance with this liver and not rush into a 2nd transplant. Please please pray that won't happen. Savannah is no where near as strong as she was with the first one and she barely pulled through it. I'm afraid she couldn't make it through a 2nd one.

At best she can come home Monday. A lot can happen between now and then adn I have already told the docs I am NOT taking her home until I know she is better. I want my smiling happy Baby Girl back. I was looking through pictures earlier and she was always sooo happy. Where is that little girl now? Will she ever be back? Please pray that God will work another miracle in her life. I love you all and please send Savannah some happy mail. She needs it now more than ever.

Monday, April 25, 2005 10:01 PM CDT

Hi all. Savannah had 2 HIDA scans today. She will have another tomorrow. They are doing the third one because they cannot see the dye running through her main bile duct. Not sure what is up with that. They are also wanting to put off the stint placement. I guess we are in a wait and see situation. Well, thats about all I know right now. Please keep praying, we need all the prayers we can get right now. Love T

Monday, April 25, 2005 9:12 AM CDT

Well, we just heard from Renee'. Savannah is now in the PICU at UNC. She is very weak. She wants to play and be happy but her body will not let her. The docs will be doing a HIDA scan at 10:30 to look for leaks around the liver. They are also putting off the stint placement surgery. They think she is to weak to go through the surgery right now. Please keep her and the family in your prayers. Marlena is there with Renee' and Stan just left a little bit ago to be with them. I will update when I can and when I hear more. Love T

Sunday, April 24, 2005 11:48 PM CDT

Just wanted to give a short update. When Renee' has time maybe she can do a more detailed one. Savannah got to come home Friday night. She was on 3 antibiotics when they released her from UNC. She continued to run high fevers and today was admitted to our local hospital, Mission. They ran labs as soon as she got there and found her T. Billi to be 4.5. It was 1.3 on Friday. So at about 7:30pm-8:00pm they left Mission and transported her via ambulance to UNC. They will probably reinsert a stint into her main bile duct and give her more antibiotics and run more tests. Please pray that can fix whatever it is. And also pray that they get to come home soon. Love T

Thursday, April 21, 2005 7:18 PM CDT

Well, this is Savnnah we're talking about. She is a very complex child and have always told Stan that I feel sorry for her future husband because she is such a high maintinance female! We drove down Wednesday evening and checked in to our hotel. We didn't arrive in time to be able to stay at Donald's house. Between staying up till midnight to stop her night feeds and the fighting druggy couple in the next roomwe didn't much sleep. At 4:00 am something woke me up and I instinctively felt of Savannah's forehead. Shewas burniong up. I checked her temp and it was 104.7. I woke Stan up and told him we had to go to the ER. Long story short we don't know why she spiked a fever but her WBC was 17 this morning. That's more than triple her normal. Her hemoglobin had dropped and she received a blood transfusion. Xray confirmed the stint was still there. Ultra sound showed everything to look fine. All labs came back looking great. So, Savannah what is going on with you now baby girl? That is the question of the day and as the day is ending we have no answers. The stint was not in her pancreatic duct like we originally thought. The docs told us when she passed one of them that it had to be the main bile duct stint because people don't pass the ones in the pancreatic duct. I remember very clearly trying to get the surgeon who placed the stints to look at the one she passed so we would know for sure. He was sure without looking at it. Well, he had never met Savannah and didn't know that she doesn't follow the rules. So, the stint in her main bile duct was removed successfully today. The thought are we may end up back in a couple of weeks to have it replaced if her biliary tree hasn't healed enough. In my last post I had mentioned how good her T. Billi was looking... aty that time I din't realize she still had the help of a stint.

So, here we are again. She is now on 3 IV antibiodics, did great through the endoscopy and except for a themometer telling you, you would never know something was brewing. She will be under observation for 1-2 days. If Stan has his way (& Dr. Lichtman is learning this too) we will be out of here tomorrow if it is safe for Baby Girl. We are totally unprepared in the way of clothes, sinus meds, etc. We didn't expect this at all. Tracy if you read this I left your # at home. You can call me at the hospital if you like. The info is below.

I Love You all & please pray that this will clear up soon. Oh, I have to mention this. When we pulled into the Er at 4:40 am I turned to look at Savannah and she knew then where we were. A big frown came on her face and I tried to console her. She looks at me as brave as she can and says, "I'm sorry I got sick momma. I will get better and go home and see EJ." It just makes me want to cry for her. This evening I was talking to her and she said she forgot her DVD's at home. (we always bring them for long stays) I told her yes we did and that Mommy didin't realize we would be staying the night and I was sorry. She says, "Don't worry about it mommy. It OK." She is only 4! I think about all these other kids that are haviung to grow up way top fast and how this "hospital life" is no kind of life for them. It just doesn't seem fair. They have never done anything to anybody and the real sad part is they are missing their childhood but they have never had one to know what they are missing... I fhtere is no update tomorrow you can assume things are going well. Love you all and please pray for us.

Monday, April 18, 2005 7:39 PM CDT

The transplant reunion was a lot of fun. I had the opportunity to tal with a lot of other people about their transplants and was approched about Savannah joining the Transplant Olympics next year. She got a really neat t-shirt that has the UNC logo on the front & on the back a giant green ribbon and the saying, "I believe in miracles!" It was really emotional for me seeing all those people who had for whatever reason been hand picked by God to travel this journey of receivin gthe gift of LIFE. Who would have ever thought you could take an organ from one body and put it in another and it work?! All the people that spoke were very open with their spiritual realizations they have experianced. I am really glad we went. On the way Friday evening it started getting dark and Savannah does not not like that at all. She almost started paniking and at some point realized I brought her care bear pillow instead of her travel pillow and she starts crying asking me to please call T so she can bring it to her. Thank goodness I brought Pinky AND the new favorite teddy. Angie, it's all your fault! She loves the bear you gave her!! Today was the first day since she's had it that she chose Pinky over it. (no name yet)Anyway, once at the hotel Savannh was occupied by the pool and hot tub. We all 3 enjoyed that! We got home around 6: pm Saturday night & 3 hours later she spikes a temp of 101. I call Chapel Hill & they say give her some tylenol if it doesn't come down bring her in. Oh, the thought of driving another 4 hours was unbearable. I was exhausted. I gave her the tylenol and it started to go down, then back up higher. I finally fell asleep praying and then waking up every hour to check her temp. It has stayed a low grade and so far today she hasn't ran one. At school this morning we ended up leaving early because she wasn't feeling good. I couldn't get her to play outside much today either. The irony of it is her labs looked great today! Her T. Billi is 1.5! Her ALT & AST are coming back down and evcerything welse really looks good! So why does she feel bad? The only problem number is her tac level. It has dropped to 2.4. The docs want it at 10-12. So here we go chasing it again. I will give her 3mg tonight and then start tomorrow with 2.5mg. Her hair is continuing to fall out without any signs of slowing up. It is actually very pretty. It hangs lighter with all the weight off.

My sweet honey (i love u!)is taking off work Thursday to go with me to take Vanna for the endoscopy to have the stint removed. We will drive down Wednesday night after work. We have to be at the hospital for labs at 8am go down for xrays and then go to pre-op pre-care. If the stint isn't there we will go home otherwise she is scheduled for 10:30am for the procedure. Ya know, if she will continue to do good and her biliary tree heal this could be the last of the anethesia for a while! I am trying not to get my hopes up that her biliary system is healing but if the #"s are going down...

Thank you to everyone who is still sending Savannah cards. It is a huge thrill for her. She gets so excited when she has a card to open. She has actually started returning some of her own mail to some of you!

Please pray for my momma. She can't work she is so sick. For that matter she can't eat or barely get out of the bed from being so sick. She did get her new glasses and can see again though.

That reminds me I took Savannah to the eye doc and got her new glasses ordered. Her left eye is in terrible shape. She just can't see anything out of it unless it is right in front of her. Unfortunately it will be 4-6 weeks before her glasses are ready due to insurance.

I will probably not update until Friday unless we get home early Thirsday. Please pray for our upcoming trip. Love you all- Me

Wednesday, April 13, 2005 9:07 AM CDT

Thank you for the suggestion of typing my posts in Word first! Duh... Anyway, as I said no news is good news, so if you check and see nothing you no things are going pretty smooth!

Last Thursdays labs looked great! Savannah’s ALT & AST (tells how well her liver is functioning) were normal!!! Her T. Billi had come down from 1.8 to 1.7 indicating the biliary tree isn’t worsening (hence the need for another transplant). Her GGT & Alk Phos had also had come down some. Now Monday is a different story. Her T. Billi went to 2.9 and GGT & Alk Pohs jumped by 200 & 400 points. Her ALT & AST went up by 20 points. I went into a panic knowing Chapel Hill had admitted her at a 2.8 T. Billi. I also knew in the back of mind but chose at that moment not to remember that this might happen. Friday we took her off Actigal/Ursidiol (thins the bile) and Prilosec to see if they were causing the itching. Her itching has been terrible even keeping her awake for hours at night. We originally thought it was the extra bile salts in her skin but her #’s had been worse with no itching.... We knew that it had not been proven if the Actigal/Ursisdiol really works or not so we took her off it with the thinking she might do OK without it. WRONG!! So she is back on it and still on the new med for itching with no results yet. Her labs tomorrow should reflect a lower T. Billi. Lets pray that it will.

Her eating is almost non existent now. She has lost down to 39 pounds. I put a size 4 skirt on her for church Sunday and had to use a safety pin to hold it up. We went to a new church that had found out about Savannah through a guy at Stan’s work. That church gave us great support throughout the transplant and the preacher rarely failed to call us daily. He still calls! I wanted to go and visit this church that showed us so much love and had a preacher that would take time to call us the way he did. When we met the preacher I almost fell in the floor. I had grew up with him. I guess my brain is truly fried for me not to have recognized the name! I talked with him last night and he was telling me about Anna, his 3 year old. I knew she had always been praying for Savannah to get better but now she has changed her prayer for her not to be shy. She is adorable! White hair just like her daddy use to have. Savannah did have on episode during church where she just started bawling her eyes out. She does that about 2-3 times a week. I’m not sure if she gets to feeling overwhelmed, scared, emotional from the meds or all of the above. It is so pitiful.

Pray that Savannah continues to feel better because she has got a very busy few weeks ahead of her. This Saturday is the UNC liver transplant reunion in Mooresville. Next Thursday we go to Chapel Hill for her stint to be removed. The first week in May was our vacation to the beach but has been cancelled. My mom has to have surgery for her gallbladder to be removed and Savannah isn’t stable enough yet to go that long without labs. May 9th is Mother’s Day. May 11th is the auction at the Grove Park Inn & Spa for Eblen where I have to speak in front of about 1,000 people. (I’m very scared!), May 12th is the all day celebrity golf tournament and May 13th is the Sponsors reception at which Savannah will meet Brad Johnson! These 3 days are being catered by different incredible company’s so I have given up on losing any more weight! The 13th & 14th is also the anniversary of Zack & Luke’s death. They would have been 7 years old this year. Wow... June 1st will be her routine check-up with labs and ultrasound at Chapel Hill. Hopefully then we will get the OK to put her in a part time day care setting for socialization. Savannah has been accepted to the private school Temple Baptist for Kindergarten! She is sooo excited. We have already visited the school twice and she can’t wait. I’m the scared one!

EJ is doing very well as far as his medical issues are concerned. The dosage of his anti-depressant has been lowered and he is doing fine. We still aren’t sure if he is going to have to repeat the 8th grade or not. He has had a rough year.

Pray for my mom for her gall bladder surgery. I don’t know the date yet but will tell you as soon as I do. Tiff is doing great. She is still in the training process of being floor manager at CVS. Marlena is enjoying her home make over from the water heater busting while in Chapel Hill and ruining her floors and walls. She has all new tile and carpet throughout the whole house and one bedroom had the walls redone. It is beautiful! Stan is still working everyday and has helped me with some landscaping this weekend. Oh yeah and Rocky. He is in his terrible twos. Do I need to say more?

I love you all and will update again when there is more to tell! Please keep us on your prayers.

Thursday, April 7, 2005 7:20 PM CDT

I AM SO MAD! I just spent an hour typing us this detailed update and when I go to post it- what happened? Where did it go? I can't find it anywhere!!!!!!

So Savannah is doing OK. Itching terribly to the point of being up half the night. I will update more maybe tomorrow. Sorry but remember, no news is good news.

Wednesday, March 30, 2005 6:42 AM CST

Mondays labs were pretty good considering. Savannah's T. Bili was the same 1.7. Ch said sometimes it takes a couple of days after becoming symptomatic before it will show in the labs so we are expecting Thursday's labs to indicate an elevation. Her alk phos is now 1200 and her GGT rose by 100 points. Her white blood cell count had also doubled. The only thing I am seeing is a few coughs and sneezes but her body is trying to fight something off. The flagyl will be continued indefinitely until the bile issue is resolved in hopes of preventing cholangitis. I am going to call today to see if I can give it to her every 4 hours throughout the day so I don’t have to get up at 3:00 am anymore. It only takes a minute to give her the med but last night it took me an hour to go back to sleep. One thing that started this weekend (this is sort-of gross) is her bowels were white!? I didn’t really think a whole lot about it. I just played it off as something she ate. I mentioned it to CH and she was like, “Oh yes we need to know that.” Apparently bilirubin is what gives your bowels the brown color. If they are white that is another indication of blockage. The bilirubin isn’t flowing from the liver to mix and color your bowels. Humm. Interesting. White poo-poo! They also had to up her prograf aka tacrolimus level which in turn suppresses her immune system even more. The docs are wanting to give the bile duct system every opportunity to heal. So we are not able to go to once a week labs yet. Her symptoms come and go. She will itch and burn and scratch like crazy half the day and then all of a sudden stop for the other half. It makes me think that maybe the blockage(s) are breaking loose and then reforming. That is fine with me! As long as they don’t stay blocked.

We are trying to relax and not live in dread of more hospitalizations. I am currently trying to find a school for Savannah to attend in the Fall. Registration for all schools are in April so I have to work fast! The first of May we are suppose to be going to the beach. This is a vacation we planed with my mom last summer. Please liver, be good and let us go! We are still hoping to go to “Dora’s house” late fall. We hope by then things will be settled down. EJ may be starting HIGH SCHOOL and driving by the end of the year!?!?!? Oh dear...We have a lot to look forward to this year. A very busy year!

Stan bought 3 trees over the weekend for our yard to honor Savannah’s transplant. Sometimes he can really surprise me when he shows his “soft” side!

I love you all and keep praying for us!

Sunday, March 27, 2005 5:03 PM CST

Happy Easter everyone!

No news is good news I've always heard and the same goes here! I know everyone has been waiting for updates but I was afraid of jinxing us! We ended up having our Easter dinner and egg hunt yesterday. Tiffany bought everyone juicy steaks and we grilled out! Savannah is learning the names of lots of new food but she isn't eating them! She isn't eating very good yet. Only about enough to make up 1 meal. Her cousins Maddy & Mason got to come and have Easter with us. Savannah loves Maddy to death! They had a great time. I'm really glad now that we had it yesterday seeing as how it's been cold all day & now thunderstorms.

Savannah's labs Thurday looked really good overall. Her T. Billi & GGT went up but only a few points compared to the alk phos that almost tripled. This is the first time the alk phos increased without the GGT following suit. CH says it is probably a reflection of bone growth issues. Cholangitis will cause the alk phos to rise but she should've started a temp if that was what it was. I am really paranoid about the bile blockage in her liver. Friday her feet started itching and it has progressed over the weekend to all over again. It's not constant yet but it is there. Tomorrows labs will probably show the GGT & T Billi climbing even more & then I will know we will be back to CH soon.

Her liver doctor on the other hand is ready to keep us home as much as possible. They are not going to do another ultra sound (unless needed sooner) until June!!! They have decided not to see her inclinic until then either (unless needed). Also, we were suppose to have the other stent removed in 1 week but they are going to push it to 2 weeks. They assured me that it will not cause an infection being left that long. They like to get them out at 4 weeks but... we will see. I hope they haven't forgotten so soon that if it is a complication, Savannah will have it.

So that's about it for now. Just watching labs and temps.

EJ is doing well & starts school again tomorrow. I will miss him. I can't wait until summer. (I say that now!) I love the weekends because everyone is home from work, school and no doctors. It is nice to be together. We went to church this morning for the 1st time in a while. I enjoyed it but everytime I heard someone cough I would think Oh, no. They are sick. We need to leave. I am so paranoided any more. I know ultimately I can't protect her. Only God can, but as her mother I will try everything in my power to be there for her. I love you guys and keep praying for us!

Wednesday, March 23, 2005 8:15 AM CST

Hi everyone! Thanks for signing the guest book with your encouraging words & letting us know you are still praying! For those of you who have sent Savannah an Easter gift - thank you! She still loves the mail. It's like the first time everytime! That's what's so great about being kid! It means so much to all of us!

I have been up since 5 am checking Vanna's temp every 30 minutes. The highest it has been was 100.3 at 6:30. I then laid my hand upon her while she was sleeping and prayed for God to touch her. In my flesh & feeble mind I can't bear the thoughts of another trip this soon although, I know God would give me the grace and strength.

EJ is enjoying his spring break but is bored. You see, he is grounded from his video games & he has a hard time trying to find something else to do! Yesterday it rained so he was stuck inside all day. Today looks promising for outdoor play! I can't wait to fly a kite!

Rocky (Savannah's pup) is doing great! He has had no adjustment problems and loves staying with his Aunt T & Grammy when we go to Chapel Hill! Her house isn't as "child proof" as ours and he has lots more things to chew on over there! We took him outside for his first time Sunday and he was scared to death! It was really entertaining. We had some apples and took them to feed the cows and Rocky went with us. He didn't mind the car ride & I suspect he will learn to love them. Unfortuntely the cows wouldn't come to us. They were way up on the hill top. Last year they knew us by the vehicle we drove & we could hollar for them & they would come. They have forgotten I guess. We will catch them when they are near the fence and remind them of the goodies we bring. There are 6 baby calfs and I am sure they will learn quickly too. The only problem is we don't have an apple supply yet! We are using some that have ruined from sitting here waiting on us to be home to eat them.

We had put up a bird feeder during one of our recent visits home that we got for Savannah. Her daddy hung it low so she could reach it to refill it. The birds had found it and were gobbling up the food. Savannah would squel with delight! When we came home from Chapel Hill this trip the feeder was gone. How disappointing. Daddy couldn't find it anywhere. We will have to get another.

Savannah is very excited about Easter! Usually I buy the kids new clothes for church, we have dinner and a family egg hunt. This year Easter hasn't been mentioned except by Savannah. She told me this morning that she wants to find all the eggs with prizes in them. I guess I need to buy some plastic eggs and candy. I figure if we miss Easter we can do like Christmas and have it when we can. I don't think I will worry with the new clothes. I am aready having to buy size 4's again for Vanna and recently had to buy new clothes to accomadate EJ's growth.

Well, Savannah's temp is hanging around 99.3- 99.5 so I guess I will continue checking it throughout the day and continue praying! I love you all-Me

Monday, March 21, 2005 6:03 PM CST

Well, we are home. It may be for only a couple of days but we are home. Stan & I were about to go crazy. It was so hard this weekend with all the miscommunication and not having a "real" reason for treatment. Today the real doctors came back to work and the surgeons relayed that the slow blood flow is just Savannah. Nothing has change. There is no more narrowing than there was before. It was funny because the doctors are guessing that the stent she passed was from the bile duct. I haven't looked at my copy of the report yet but I know the docs could have pulled the report and seen that the 2 stents are different types and could have confirmed which one it was but they didn't. There is no test for colongitis so they were treating on an assumption. The only way to know is to take her off the antibiodics and see if the fevers return. If they do we will know it is more likely than not colongitis and we will head back down for a central line to do antibiodics for 2-3 weeks minimum. I reassured the docs that yes I could learn how to do an IV at home. There is no way I am staying in the hospital for that. If the fevers don't return then we will pass it off as a tummy bug.

As far as the stent coming out I don't know what is going to happen. The docs don't either. If her T. Billi, GGT & Alk Phos start to climb again they may put another in or we might have to do the drain. We will see.

So, I am trying to relax while we are home. With each trip to the hospital Savannah is becoming more aware of what it means and she really misses home. We try our best to keep things as up[beat for her while there but it can be very hard sometimes.

Please pray that this was just a bug and that things will smooth out SOON for us. As a family, we need to be a family for a while.

Monday, March 21, 2005 2:15 AM CST

Sunday was not very productive on the doctors end. The ultra sound was read by an adult tech and there is conflicting information. They read that the vessels and hepatic artery are contracted but I never did get a clear answer as to the difference between last weeks ultra sound. All they kept saying was we needed to wait until Monday when a peds tech can read it. When the surgeons came & talked with us they said everything looked fine but when I talked with the GI doc she said they had put in the report to do the HYDA scan so I'm confused & I think they are too. The antibiodics have continued and as of 9:00 pm her IV drip was lowered to maint. at 10 cc/hr. She ate chips, popcorn and some ice fruit with lots of drinking. She had downed a 4 oz box of cranberry juice before we knew it that came on her dinner tray. This normally wouldn't be a problem except her bowels are already super loose! She loves fruit juice but the OJ has to much potassium & apple juice does the same as cranberry. Poor kid. She just can't win. You try to get her to eat & drink but then she wants the very things she shouldn't have.

On the other hand Savannah was productive. This evening we got freedom from the pole for 1 hour to take her to the cafe with us for dinner. We had just sat and started to eat when her nurse comes down holding a baggy asking us if we knew what the contents were. I did and it almost ruined all our appetites. She had passed one of her stents. I'm not sure if this is good or bad. If it is the main bile duct sten that means it was only in place for 11 days and they may want to replace it. Then again it could have been trying to pass and got lodged causing this episode of elevated lab #'s? If so we don't have to worry about any infection getting stuck in there. Then again the stents were seen on the ultra sound & aparently looked OK maybe? Who knows. Monday the real (regular) docs will be here and hopefully we can get some answers. One of the attending weekend residents has put her on a low fat diet. I ask to speak to him to find out why & he went htrough the whole spill of giving her pancreas time to heal and keeping her out of pain????? I explained that she didn't have any pain & that the pancreatitis was gone. I told him to confirm with her lab #'s. Again I was told we would address this issue Monday (when the real docs come back). We started her on her continuous night feeds again tonight and she is at a rate of 80 cc/hr with her beelly tollerating it fine! This will help tremendousloy with her energy level.

We did get to spend a total of 2 1/2 hours of freedom from the pole & off the floor! We spent 1 1/2 hours outside in the sunshine wishing she was well enough to jump in the car and head home. We got over that and fed the birds french fries instead. EJ is on spring break this week & we were really looking forward to being at home together. He is really bummed. Monday GI Dr. L will be taking over Dr. K and he is much more laid back. Who knows we may get to go home tomorrow the way he is! It will all depend on the ultra sound and the new stent issue. This is all I can think of at the moment so I will update again soon. Love you all and please keep us in your prayers.

Saturday, March 19, 2005 6:17 PM CST

So, it looks like maybe colongitis? With it being the weekend it is hard to get tests done and some we will have to wait for until Monday. Savannah's T. Billi this morning was 2.4 but her GGT and Alk Phos have dropped from the 600's & 900's to 300's & 500's so that is very encouraging. The itching & hives that we finally got rid of last weekend haven't returned yet & hopefully they won't. (caused from excessive bile salts in the skin) Her hepatic artery flow is slow and we had an ultra sound this evening to see if it is any better. If she does have colongitis the slowing could be from that. Her kidney function seems to be improving and she hasn't had a temp since 6:00 am. She is currently on 2 antibiodics and she might have to go on a 3rd. We should know tomoorow after the cultures come back. It is very possible that on Monday she will have to have another HYDA scan and/or another ERCP to check the stents. Last night we did avoind another NG Tube and catherization so that is something to be thankful for. Tonight will make 10 days without nutrition other than the small amount of oral food she had Wednesday & Thursday. When I left the room she was eating popcorn but our nurse might put a stop to that if she gets the ultra sound results back and they are bad. If the results show anything worsening then the surgeons said they would move forward this weekend and not wait until Monday. Meaning she may have to be put to sleep which means being NPO. Another positive thing is her ALT & AST look the best they ever have since we first went home on Feb 9th! They are 45 & 54! Her mag of course has dropped which puts her in danger of seizures with the conmbination of Prograf. They may supplement by IV. Savannah overall is hanging in. Her & I both have done a lot of crying today just from the fact we are here again.

On another subject her docs do not want her in preschool for another month or 2 and that is only if she progresses. Savannah has been so sick for so long they are very concerned about any type of illness. Her immune suppression is stout and her reserve is little. They want to give her a chance to fully recover and get strong again especially with trying to give her bile duct system a chance to heal. But, they all continue to say they want her to live as normal as possible and recognize the importance of that too. I am confident that they are working as hard and doing all they can for her. So, that's about it for now. The floor we are on doesn't have a computer so it's hard to do updates but I will as soon as I can. Love you all...

Friday, March 18, 2005 9:36 AM CST

Savannah, Stan & I are off to Chapel Hill. After giving Tylenol time to work her temp is at 101.6 and climbing. Will update later. Prayers please.

Friday, March 18, 2005 6:35 AM CST

Nothing like 2 updates within 12 hours! Savannah & I are headed to the local hospital (Mission St. Jo's) for admission. For whatever reason she is still vomiting. She is perfectly fine other than that. No fever, belly is soft, etc. We have to get fluids in her to keep her from being dehydrated. That will cause even more problems. We will have her regular labs along with pancreas labs done when we get there to see if we can get a clue. There is a computer there but it is usually messed up & you can't get online so I will update when I can or call Mission for her contact info. Love you all-

9:00 am update
This is the first time post transplant that we have tried to get a local admission. The locals are not co-operating!! UNC doesn't have privalages here and he peds office doesn't see an urgency. We have a 2:15 appointment there. I told the phone nurse that if she vomited again I would just go to the ER. She said no, no don't do that. You don't get dehydrated after only a couple of vomitings. Just call me back if she does again. I tried to explain that the past week and that with a transplant you have more problems if you get dehydrated. She could not see the prevention side of it. UGH!!! So I am now trying to at least get some labs done. I have the orders for everything except Amylase & Lipase. UNC can't fax them because of the privalige thing and I can't get through to the peds office.... Update more later

Thursday, March 17, 2005 8:11 PM CST

Sorry it took so long for an update! Home, doctors, returning phone calls, putting in medical supply orders blah blah blah ... I've been busy! So, Mom stayed with me & Vanna this last trip to CH. Even this evening when I talked with CH they reminded me how licky we were that Savannah's pancreatitis didn't last no longer than it did. When we came home her T. Billi was 1.2! (norm is 0.0-1.2) Her GGT & Alk Phos were down into the 300-400's! Great #'s other than mag, albumin etc that we knew would straighten out once she started getting nutrition again. On the way home Savannah's whole attitude was different. Well, it was different even before we cam home at the hospital. She was smiling more and more alert with energy and interest in doing things. She actually played with a Barbie for about 2 hours this stay. She has never shown any interest in Barbie. The past 2 days she is asking me about why daddy & I got married. I told her because we loved each other and she proceeds to tell me that daddy & I are best friends. How sweet and neat to have a conversation that carries through a thought process! Very exciting to watch her mature and progress! Last Thursday when Savannah & I went to CH we pulled into the parking deck and she asks me, "What's this?" I told her a parking gagarge for everyone to park their cars in. She says, "Everybody so happy that I'm all better & I'm so happy & I love God too!" It floored me! I of course have always taught her about God but to have her acknowledge Him in that way was so precious to me. So in the car on the way home she was smiling all the way! She would even sing a little song saying I'm so happy over & over. Mom & I loved it!

Todays lab #'s shows her T. Billi @ 1.7, GGT & Alk Phos climbing too. CH doesn't know why her #'s came down to begin with considering the main bile duct was in great sape with a good flow. They also say we really won't know the full effect, good,bad, or nothing until the stint comes out. The stint also could get clogged causing elevated #'s. It is a wait & see kind of thing. I will hopefully find out tomorrow or Monday if she can start a preschool on minumal basis. The concern is because the immunosuppressant meds are so strong to allow the bile ducts to heal (if they are going to). We are still having to be very careful.

About 7:45 pm Savannah ran to the bathroom and vomited a pretty good bit. I immediately called CH and they said the pancreatitis would not be the cause. Hopefully she just needs lots of rest. I have klept her very busy with errands s9nse we've been home and she hasn't took any naps. Or maybe her noodle soup for lunch didn't agree with her? Anything except a virus. If she vomits again I have to call back and they will tell me what to do.

EJ was out of school today so we finally got to go Birthday shopping. He enjoyed the trip to Toy's R Us and like the 2 pieces of birthday cake even more!

Rocky, the new puppy, is doing great and is just one of us now!

I Love you all and continue praying for us. Thank you to those of you still sending Savannah mail. It puts a smile on her face everytime!!

Oh, I talked with Mason's Mom & Dad and the docs had to start him on almost triple the normal doses of radiation along with the kemo. All of his red hair is gone now and the cancer has spread into his spinal fluid. Please remember him.

Tuesday, March 15, 2005 8:40 PM CST

We just got home! I will update with details sometime tomorrow! Thank You Lord for your Blessings!

Saturday, March 12, 2005 5:06 PM CST

Hi everyone. Stan & Vanna are sleeping soundly so I decided to take the opportunity to give an update. Savannah was taken at 2:15 Thursday for the ERCP. The 2 surgeons doing the procedure talked a long time before hand with me and gave me intimate details of the procedure. I really liked them and thanked them for agreeing to try it on Baby Girl. They normally only do adults but we couldn't find a pediatric doc to do it on a child under the age of 7 because the anatomy is too small. So, thanks to the docs for giving it a whirl.

On an adult the procedure takes about 45 minutes so they told me to give them an hour. It took 3. They send a scope (camera) down the throat past the belly and into the intestines to an opening where the main bile duct and pancreas duct both empty their fluids. The 2 ducts are like a V meeting at the same opening. Once they have the camera in place they send down a catheder (along with a breathing tube down her throat as well) and try to place it in the main bile duct to inject the "glowing fluid" so they can watch for any leaks, blockages or narrowing. The catheder repeatadly went into the pancreatic duct. This irritated the pancreas enough to give her a moderate case of pancreatitis which is what we are dealing with now. The surgeons ended up putting a stent into the pancreatic duct so they could bypass it and actually get into the main bile duct. It worked. The main bile duct looked great. No narrowing, blockage, gunk of any kind. The bile was flowing perfectly. The bile duct system that is in her liver was "irregular". It has been damaged due to the rejections and viruses post transplant. The surgeons went on ahead and put a stent in the bile duct with hopes of it somehow helping or maybe because they were into it too far to back out? I'm really not sure. So the stent placements were successful! No having to puncture her side with drain tubes and bags etc! The pancreatitis can last for 2-3 days up to 2-3 months. The treatment is no food or liquids by mouth and lots of IV fluids. This lets the pancreas rest and heal. Savannah is in a fair amount of pain that is being treated with my not so favorite drug, morphin. I spoke with the cheif transplant doctor this morning and he said that he has seen pediatric livers heal the bile duct system a few times. Adult livers will not heal. He also said it could get worse or stay the same. He gives her a 50% chance of having to have another transplant as there is no treatment for the bile ducts inside the liver. We should know (according to her lab #'s) in a month or two. I hope I have explained everything in simple terms for everyone. We are hanging in and will see what happens. As for her button, yes it was placed without my being aware of it and then somehow came out Friday morning. I was pleasantly surprised to see it had been placed. If we had got to come home that would've meant not having to come back this coming Wednesday. We will wait until she is over the pancreatitis before replacing the button. We will deal with the folley a little longer. If she isn't over the pancreatitis in a couple of days they will be putting in a new PIC line if she has a site availible. If not then a central line will be placed so they can start giving her TPN (IV nutrician). Please pray for God's will to be done. I love you all- Me

Friday, March 11, 2005 9:26 PM CST

Hi again. It's T. As of right now, I say this because I probably will not hear anything more tonight, Savannah is doing ok. She was sitting in a chair and watching a movie. Yes, Renee' did say bile ducts. They are abnormal, the docs do not know why. They said that they might stay the same, her body may fix them, or they could get worse. If they get worse, really bad, they will have to do another transplant. Also, Savannah's G-tube that was put in yesterday fell out today. Renee' said that she was talking to a doc and Savannah says, "Here ya go mommy." Apparently it had fallen out and Savannah played with it for a little while before giving it to Renee'. Renee' tried to put it back in but could not because Savannah's belly had already closed up to much. Also, Savannah threw up the last time at 1 today. That is a good thing. She is retaining fluid also. They did an ultrasound and other tests to see why she was retaining fluid around her stomach. They at first thought that it was because they had punctured her stomach. Well, they bumped or did something to her pancreas yesterday. So now she has pnacreatitis. They said the way they fix that is to give her tons of fluids through the IV, give her morphin for the pain, and let her rest for 3-5 days. As of right now I believe that she will have to stay in the hospital until she heals enough for the docs. Also, Mom, Stan, and Marlena went down there today. I believe all of them have made it there by now. E.J. and I will stay here and hold down the fort until they get back home. Pray that all goes well and that Savannah will get to come home with a G-tube in place. Thanks again everyone. I will let you know when I hear anything more.

Thursday, March 10, 2005 11:23 PM CST

Hello all. This is Aunt T. Please pray as hard as you can for my sissy and Vannah. They made it to Chapel Hill ok. They took Savannah back for her surgery around 2:30. She was in until 6:30. Renee' had to go and find Savannah because noone ever said that she was done. Renee' finally finds her and sees that Savannah is throwing up and there is old blood in it. She has to go track down a doctor to find out what they need to do to help her. As of the last time mom spoke with Renee' a couple of hours ago, Savannah was still throwing up. And Renee' also found out after raising Savannah's shirt that Dr. Weiner came and took out the tube and put the button in. That is good, because they won't have to do it next week. But it is not so good because renee' never signed any release forms for it. Noone ever bothered to tell her about it either. The doctor told Renee' that he didn't see any narrowing which is good. That meeans he didn't have to put a stint in after all. Although he said that he did see some abnormalities in the bile ducts I think. In any case, whatever it is they don't know why it is abnormal. Also, mom told me that Savannah's LFT numbers have went up some more. Why does this precious LITTLE girl have to go through all of this? Why can't she have it easy for once? I guess we will never know until we meet God. Then we will know it all and we will get to meet Avery in person. Again, please pray for Renee'. She is there alone and is stressed again. Pray for the doctors as well. They need guidance and wisdom. And no, I don;t know when they will get to come home, but I hope it is soon. Thank you everyone and may God bless you.

Wednesday, March 9, 2005 10:15 PM CST

Savannah & I are off to UNC tomorrow (Thursday) morning. 11:00 am for labs, 12:00 for pre-op and 2:00 for surgery. If the ERCP is successful we should be home tomorrow evening. That is with NO complications. If the ERCP is not successful or Savannah has complications then who knows when we will be home. She doesn't know we are going yet. She would freak. I will try to keep in contact with T or Mom so they can update the page. There are a ton of things that can go wrong but I am not even going to write about them. I am praying that things will go great and we will be back in our own beds tomorrow night! Love you all.

Monday, March 7, 2005 9:10 PM CST

Today Savannah's T. Billi was 2.6. All other LFT's are rising also. I find out in the morning when we go down for the ERPT procedure. The doctor will go down the throat with a camera into the liver area, inject dye and watch for a narrowing of the duct and try to manuever a stint in. If her is unsuccessful her will puncture her side and proceed that way. Hopefully it will be a 2 day max stay and will be donme this week. Her potassium was 5.8 (hospital admission @ 6.0) so we have started the Fludrocortisone again. We stopped the acyclovir for 2 reasons. Hopefully it is contributing to her hive problem and she is almost 3 months post tx!

Saturday Savannah ate a bowl of Trix cereal for breakfast and a few bites of spegetti for lunch. Sunday we took her to South Carolina to visit with her great grandparents. She enjoyed it and so did they. Some of her fears are lessoning and she is getting more use to how things (life) are. She is still, everyday, talking about how happy she is her tube in her nose and gone and gets me to reassure her that no one is going to put it back. Today she was also mentioning being sick and vomiting in the hospital. I hope over time those bad memories will fade completley away from her memory. She is down to 41 #'s now but that was to be expected and she will probably lose a little more. The only problem is I am going to have to go and buy size 4 pants for her! All the ones she has are size 5 and won't stay on her tiny waist.

EJ is doing fine and when he found out I would be heading down to UNC again this week he only wanted to know for how long and was fine with it.

I want to thank everyone who is continuing to support us through monetary donations, gifts & cards for Vanna. This is a big adjustment time for all of us and your support means so much! I love you all- Me

Friday, March 4, 2005 8:04 AM CST

On Monday Savannah’s labs are indicating another bile blockage. Her GGT, Alk Phos & T Billi are trending upward again. Her Tac level was 14.1 which means we are OK with doing the every 12 hour dosing (thank goodness) and we can lower the dose. Stan & I still haven’t adjusted to going to bed before 11:00pm. Pre tx we were always in the bed between 9-10:00. Poor Tiff is still working her 3rd shift from the hospital. She has been able to fall asleep around 2:30 am so we will all eventually adjust. Thursday Savannah’s labs showed her T Billi going from 2.0 Mon to 2.5 & her Ggt & Alk Phos still climbing. UNC has found a doc that will put in a stint via her throat as opposed to going in her side and treading a drain tube with a bag that she would have to have for who know how long. Going in through her troat they will use a very tiny camera to guide them and put in a stint that will hopefully last a few weeks. When she passes it we may or may not have to put another one in. Just depends on how the duct is doing. The doc at all costs will try not to have to reopen her. She is at very high risks for complications and she has so much scar tissue that the bleeding could be fatal. Monday we will repeat her labs. If at any time her T Billi reaches 3.0 we will have to head on down to UNC for the procedure. Hopefully it will jest be for a couple of days. I am having to work hard on my mental status and keep reminding myself that it will only be for a couple of days & not a couple of months. That is a great fear. I am having to live totally in today and not have the thoughts of what if? It is hard but I can’t enjoy Savannah living like that. I want to live each day with thankfulness and joy. Not worry. Savannah still isn’t getting the full nutrition UNC wanted her to but her labs indicate that she is holding her own so we can now go down to 3 cans of Pediasure at night and nothing through out the day! This will give her an even better opportunity to get hungry. She still has many issues with fear. She now is scared to drive down our drive way. She covers her ears and even begs me to go down Mamaw’s road instead. She tells me to go slow. She is afraid the car will get stuck or fall down. We are going to have to stop using the Emla cream (numbing med) for her labs. Every time we use it the vein ends up being crimped and they have to go in the other arm. It takes about 5 minutes of trying to get the blood flowing and then they go in & out in under a minute of the arm not numbed. I think doing the whole thing in under a minute is better for her than having her sit there and cry while they try unsuccessfully in the numbed arm. We are having a major hive issue. Originally I thought it was her nerves but it has gotten to the point where she is bleeding and making sores from scratching so much. That is even with the help of Benadryl. So Judy had us stop the most recent added med which was to help lower her potassium. It hasn’ helped so far. I really think it is the Prilosec. I give it to her at night and yesterday she did fairly well without any Benadryl until I gave the Prilosec to her and then the hives reappeared and the scratching began. I will work on that tonight to see if it the culprit. We stopped the Dapsone because of the bone marrow suppression and her labs jumped up in that area! Hopefully the docs will decide she is OK without 2 more months worth. We will see. Her B/P was staying high for about a week and is now hanging around 117/51 which is better. All in all Savannah is moving forward and I thank God every day for the miracles He has performed through her. EJ is doing fine. All he needed was to see his mom and then he was ready to leave home again!

There have been 2 occasions now where Savannah and I have been out in public and someone recognized her from the picture in the paper. They were so happy to meet her. I would love to meet everybody whose life she has touched. There are several churches I want to take her to also. If you would like to meet Savannah please let me know by email or calling me. I want to share with everyone the miracle. We appreciate everything that everyone has done so much & I want to give back by sharing her with you! So just let me know & we will work something out. Love you all & please keep praying for her & us. It is easy to slck off or even quit praying when things are going well but we all need to pray without ceasing!

Sunday, February 27, 2005 9:04 PM CST

Saturday Savannah was ready to go mentally. She is improving greatly with her fears. She will tell us numerous times a day, "I'm glad that tube gone my nose." It is so sweet and she is learning how to be careful with the long tube hanging from her belly. We actually put it in her pants pocket today and it worked pretty good! When she first woke up she started talking about her new puppy and wanting to go buy it at the store. We have told her and knew after the transplant we would get a dog. She is past the wait of having a new pet and a cat is to risky with the litter box so a puppy it is. She wants a pug. We took her to the pet store and we held tons of puppies. All of them adorable. She kept going back to the pug. Unfortanately it was the most expensive dog they had. $845.00. We told Savannah we would wait and find just the right puppy. My goodness! There is no way we can afford a thousand dollars for a dog even if it is for the Baby Girl!

Saturday evening she started running a temp again and complaining with her back hurting. I can only assume it is from the biopsy. They say they are very painful. Her belly incision is healing nicely and she does well with Tylenol controlling the pain. Today she climbed on our bed for the 1st time by herself. It took great effort and she almost gave up but when she did it I made a huge deal about it and she smiled at her accomplishment. She is starting to try and walk fast again and I know it won't be long before she starts running again! She isn't tolerating her feeds good yet. She can only handle about 2-3 ounces over a couple of hours. I hook her up to the pump last night and woke up every little bit feeling for her belly to be distended. It wasn’t long before it was and I had to turn the feeds off. I am afraid of dehydration. Hopefully her labs will look OK tomorrow. I am scared of a readmittance because of the poor nutrition. I am trying my best to not worry so much about it. My nerves can’t handle it. I have yet to let myself fully relax and I so desperately need to. I just got through giving her a bath and she had a reaction to something. It was hives but I don’t know if it was the bubbles or just her nerves. We are using the same bubbles we always have but she has the 3 recent incisions so I’m not sure what caused it. It scared her. Well, gonna go for now. Love you all

Saturday, February 26, 2005 8:51 AM CST

First I want to say thank you to evryone who has replied with empathy, encouragement, etc in Savannah's web page. I have sat here and cried with each word being filled with hope and strength. Thank you all so much.

Looking back over the past few days I now realize I was scared beyond comprehension. I was so afraid that when Savannah was intabated for the g-tube procedure her lungs wouldn't be resady and we would have a repeat. I thought everything that could go wrong would. The morning of the surgery we were first on the schedule. We arrived at 6:00 am and waited to sign the consent. Previously I had been told the placement would happen one way but it was put in the computer to be performed another. I wasn't signing the consent until I knew. Savannah had her happy med and things were going well. Her anxieties were gone and she giggled because she was so wobbly. The surgeon came to explain the procedure. I had no problem with it but he felt it best to cancel uintil a leter date so I could have more time to think about it and make sure we wanted this done. Mine and Savannah's ambassodor was able to convince him that I didn't need that time that I was just one those mom's who wanted to know every little step. Thankfully, 3 hours later and another dose of happy med Savannah was whisked away for the g-tube placement and a liver biopsy. We spent the pevious day keeping things happy and light to try to deminish Savannah's anxiety. Her ultra wsound looked great. No blockages, leaks, etc. that would confirm her t. billi continuing to climb. Overall it went better than expected. After the surgery Savannah was placed NPO for about 24 hours and when she woke up she wasn't to mad. Just in pain. The result from the biopsy showed a major bile blockage and her rejection level was a 2. Because the biopsy showed this blockage she was then put NPO until a scan could be performed Friday to find the blockage. Friday morning her LFT's looked the best they have in 6 weeks! Everything was moving down! OK we are all puzzled again. We wondered all day if the scan would go along with the labs (which now indicated the blockage was gone) or the biopsy. The scan showed only a few imnormalities! Absolutely no bile blockages! Woohoo we are coming home. After the the scan while was slightly sedated we took the NG tube out to be gone for good! Savannah is now as I tyope this telling me her tube is all gone and nobody going to hurt her. She was so excited on the way home last night wanting to tell EJ that her tube was gone. I am hoping it will make a huge difference both mentally and with the eating. Our nutricionist help me come up with a plan to start weaning her down on the pediasure so she will start beocming hungry and hopefully start eating. We go back in 3 weeks to have the mic-key button placed. Right now she has a similar tube like the NG coming from her belly. I just pray it doesn't come out before 3 weeks or we will be headed to the Chapel Hill ER. We arrived home about 11:30 pm last night and we went with the routine of meds and setting up the feed pump. Oh I almost forgot! I get to start sleeping again! Even though her tac levels are all messed up again Judy pled my case to the pharmisist and she agreed to let me try 12 hour dosing! No more every 8 hours and lack of sleep! At 6:00 am this morning Savannah woke us up vomiting and running a low grade temp. I was getting nervous but reasoned her belly wasn't ready for a full night of pediasure. It was very distended and she was really hurting. I stayed up for a little while and watched her temp. It held steady and we both drifted off to sleep until 8:00. She feels better but is having diarhea this morning. Mentally she is doing great. She keeps asking me if we get to stay home. She loves being home and is not scared anymore. Oh, (I am still tired and my thoughts are scattered) Her iron levels are fine so the culprit is the side effect from several meds of bone marrow suppresion. There is only one med that can be dc'd and that is the dapsone. She needs 2 more months worth and we may have to do an inhalen form but won't know until next week. She is very anemic and her beautiful hair is coming out by the handfuls. I can only imagine how weak she must be from it. Gonna go for now and live a full happy day of being HOME! Thank you all again for praying for me and my family!

Saturday, February 26, 2005 4:56 AM CST

THANK YOU JESUS! EVERYONE IS HOME SAFE AND SOUND! I GET TO CHASE SAVANNAHS PIGGYS(TOES) TODAY!!BREE

Thursday, February 24, 2005 9:05 PM CST

My last post has upset a few people so I want to defend my right to have a bad day. There is not one of you who can tell me that everyday of your life has been good. You have had days when you are tired a think how much longer or how could this happen or just feel down in general. I am only human and have those days to. I on the other hand chose to share it with the world via Savannah's caringbridge page. This is a journal. An accurate account of her journey. Some day when she reads this I want her to know the reality of the hurt a mother goes through. I want her & others who may travel this path to know it's ok to have these feelings. Nobody is super man or woman no matter what kind of front they put on. Writing my feelings (right or wrong) is a vent for me. It helps me to sort them out. So to those of you whom I upset I apologize but I will be OK. I promise.

Savannah is sleeping at the moment but still hasn't urinated. At midnight they will insert a catheder to drain the urine that will make her sick if it doesn't come out on it's own. Tomorrow she will have a scan similar to an MRI to confirm the bile blockage. The procedure to put in a stint will then be scheduled for soemtime next week (I am assuming). Her nerves are very upset and I am now giving benedryl to help with the itching.

Thursday, February 24, 2005 5:32 PM CST

Thursday, February 24, 2005 5:14 PM CST
Regrets, frozen tears, listening but not able to hear, bitterness, questioning, rude awakenings...

We knew citrullinemia. We knew the treatment. We knew the cure. For some it gives a new life to.Agreat life. Others it leaves in a worse state. All the if's are there. All the maybey's. I have have faced that all of Savannah's life. While in the womb I prayed and had faith that the prenatal tests were wrong. Once born into this world the tests would be negative. I was wrong. All her life I have said I know the worse possible scenerio but God is good. He will have mercy on her and give hger the easy road that I hear of others speaking of. She won't fall into the rare but can happen category. Wrong again. She has and continues to do so.

I must have been out of my mind when I thought that having a liver transplant would make her life better. Some say it can still happen. I know it won't. I have given up on hoping for a "normal" life for my daughter. I didn't have a clue how a transplant would change her, change what we knew then as normal for a much harder road that will now become our normal. My family & I over time adjusted to the citrullinemia life.I hope we can once again make another adjustment. I wish I had never dicided to do this. Why couldn't I just continueto deal with what I knew. Why? I don't like this life anymore. I feel so alone and mostly am. The decisions are mine to make. The care is up to me. Whether it is good or bad it is on me. Others can hang around or call when it is good. When things get bad - leave mentally or physically. Whichever they prefer. I am alone in this fight with Savannah.

EJ is alone. I am all he has and all he has ever had. Now Savannah has me. I love you son and am so sorry.

How long before we go home? Your guess is as good as mine. I didn't even bring a coat because I knew everything would be fine and we would be home tomorrow. Wrong again. I am hurting myself more by thinking positive. I am tired of holding my head up. There is nothing to hold it up for. This is how it is and how it will continue to be. Yeah,they say maybe someday things will level out. They won't. It has been this way all her life so why would it change now? Only God can change and He has chosen for whatever reason not to. My children have brought me so much joy but they have suffered so much. Why? Others are so healthy,they can and do enjoy life. Why can't mine?

Thursday, February 24, 2005 2:46 PM CST

Hi again,
I have been trying all afternoon to get to a computer. Finally. Savannah had her surgery and is doing fine. Don't know the results yet. Doc said just eyeing it looks fine,but.....Please continue to pray for Renee. She has fallen apart big time. She has backed doctors up against the wall all day.They were going to put off the surgery but when she got through they put things into fast motion. They were going to put Vannah back on morphine but Moms have the last word.Shes not on it thank God. We would have been here awhile while they got her off of it. About going home one said a few days,another three,one I don't know.Wrong answers for Mom.She said "I was told Friday.They are sending up her main doctor to talk to her.
Don't know the answer to that yet.Vannah is up walking around and obviously doing good. Thanks to all of you for your many prayers on our behalf.


Love,
Bree

Wednesday, February 23, 2005 9:19 PM CST

Hi Eveyone,
Just a quick update. We have to have Savannah at the hospital at 6:30 in the morning. They will be doing a liver biopsy. Her total billi rubin has jumped up more. God can take care of ny rejection that is going on.They will put in a G tube. Glad to see the ng tube go.Pray for Renee. She has a bad migraine tonight. No wonder.I couldn't get half the thins done for Savannah that she does.She is an incrdible super mom who loves God with all her heart. More tomorrow.

Love in Christ,
Savannahs Bree(gm)

Tuesday, February 22, 2005 12:16 AM CST

Mom, Savannah & I are heading to Chapel Hill in just a few minutes. Her T. Billi had jumped yesterday so we will an ultra sound at 8:00 am Wednesday. She doesn't want to go. Can you blame her? She can't ewven be convinced to go to Donalds House. She has ask me several times, "Some people not gonna hurt me?" I lie and tell her, "No Baby. Nobody is going to hurt you." She then replies with, "You right here with me?" I confirm that I will always be right here with her. What am I suppose to say. Yes Savannah, the surgeons are going to stick a light down your throat, cut a hole in your belly, put a big needle into your liver and take some samples, start an IV and who knows? If anything goes coo-coo you may get to get a new pic line, be reopened completley if any bile ducts are leaking, get an arterial line... I don't know what's going to happen but I do know it isn't going to feel good. She is so scared. I am taking it one step at a time. EJ isn't happy about me leaving either. He was really upset with me. Stan has to be in court Thursday in Winston Salem so he will be able to see her for a little while after surgery then come home. Please pray for traveling grace and guidance for the doctors. Love you all.

Sunday, February 20, 2005 9:22 PM CST

In memory and honor to our donor family.

'I'm going to heaven ,,,' Avery Hackett, 6, left hope among tears

Joe Hackett has cried many tears since his 6-year-old daughter, Avery, died this week.

Still, Hackett and Avery's mother know that Avery left hope for others. The couple say she gave the gift of life this Christmas through organ donation.

"My little girl saved four lives today," Joe Hackett said Thursday.

Avery was declared brain dead on Wednesday by doctors at UNC Hospitals in Chapel Hill. The family decided to keep her on life support until recipients could be found for the organs.

Hackett said his daughter's heart went to a child in Minnesota. Her liver went to another child in the same hospital where Avery died. Someone in Washington, D.C., got one kidney, and the other was being prepared to send to another person in need of it.

Hackett said her pancreas would be used for research to help other children, and her brain was donated to UNC so that researchers could try to understand the illness that struck Avery.

"It's only fitting that she keep giving," Hackett said.

Avery, a first-grader at Meadow Lane Elementary School, had experienced sinus problems that seemed to worsen this year, he said. Thinking it might be a sinus infection, Hackett said doctors ordered a CAT scan to rule out anything more serious.

The test showed a brain tumor.

Hackett said he received the news last Thursday and the family traveled to Chapel Hill that night in preparation for a Friday morning appointment.

Surgery was scheduled for Monday morning. It seemed to go well. Then something inexplicable happened.

Gena Hackett said an artery in her daughter's head became blocked and Avery suffered a stroke. She never regained consciousness.

"This is one case where the doctors absolutely do not know what happened," Mrs. Hackett said.

Even so, on Thursday evening as a steady stream of visitors milled through the family home to pay respects, Mrs. Hackett said she had a strange sense of calm.

"I know I have no regrets about the time I spent with Avery," she said. "I spent all the time with her I could."

Referring to Avery as his "campaign manager," Hackett said she accompanied him often both times that he ran for a seat on the school board. He said she became a familiar face to many and, as a result, touched a lot of lives.

Hackett said he draws comfort from knowing where his little girl is now.

"I know she's in heaven," he said. "One thing, she said the sinner's prayer on October 31 of this year." The sinner's prayer is the prayer of repentance and salvation.

Hackett said more reassurance came after a visit from the family's pastor, Andy Stovall of Whitley Pentecostal Holiness Church.

"She loved Pastor Andy to death," Hackett said. "Whenever we'd go to church, she had to go give him a hug and a kiss.

Stovall visited the family the night before the surgery, Hackett said, offering a special prayer for Avery.

After Stovall left, Hackett said, Avery started dancing around her hospital room and said, "I'm going to heaven. Pastor Andy prayed for me."

Hackett said, "As a parent, you don't want to talk about that. But she knew, and God was speaking to us, trying to prepare us for what was to come."

Hackett said he and his wife thought it was appropriate to donate Avery's organs. He said that before her own operation, his daughter became fascinated watching a surgery being performed on TV. Avery told her father she might even want to become a doctor, he said.

"She gave the gift of life to four people this Christmas," he said. "She's my own little doctor now because she saved a lot of lives today."

A celebration of life is planned for Saturday at 6 p.m. at Whitley Church. Interment will be Sunday at 3 p.m.

In lieu of flowers, Mrs. Hackett said the family would like people to donate stuffed animals.

"We want to take them up to the children at UNC Hospital so they'll have a friend," she said.

Mrs. Hackett said the one thing she most wants to tell other people is, "Hug your child and tell them you love them because you never know how long you have."

Wednesday, February 16, 2005 8:56 PM CST

It is a general rule of thumb with my family that plans are made to be broken! At 9:00 am Savannah was still asleep. I decided to cancel her appointment with the pediatrician and let her rest. Her speech therapists calls a few minutes later and says she might be taking a cold so we canceled that too! Savannah was OK with that after I told her I would take her to the library in stead. She loves going there and we did have books that we had checked out in early November to treturn. The staff was great, waived the fees and was thrilled to see Savannah. I surprised her by inviting her favorite cousin Noah to go with us. They ended up spending the day day together! They have both missed each other so much. Noah really couldn't understqnd why Savannah wouldn't eat with him. He too was looking forward to sharing a meal with her. This evening she wanted to go to her Mamaws but it was too cold so I let her call her and ask her to come up instead. Mamaw can't say no to that sweet baby so of course she came and played for a while. Savannah is now asleep after having a full day! She did scream once today when Noah was hiding in her Dora tent acting like a monster. She came into the bedroom and screamed her sweet playful scream that I hadn't heard in so long. She is starting to talk louder now but gets quiet a lot and will strart to tell me something and then say, "Nuin" (nothing). She does that alot and I can't help but wonder. I got the # for a therapist today who is somewhat familiar with Savannah and hopefully she will agree to counsel her. I must say that today things almost felt normal. Savannah was much more relaxed and didn't have to be right by my side every moment. She has now had 2 doses of her new med and so far her blood pressure has stayed stable. Her tacrolomis level from Monday was 14.8 so we lowered the dose. We have labs in the morning.

EJ had an off day today. He called me upset but was better by the time he came home. He starts back therapy next week. Love you all.

Tuesday, February 15, 2005 9:04 PM CST

Savannah's labs from Monday showed her potassium trending upwards again so she has been put on a med for that but we got to drop the magnesium supplement. Her AST is up @ 93 her ALT is 72. GGT & Alkaline phosphate are still elevated, BUN looks good as well as T Billi. So the main thing right now is the AST & ALT. They need to lower. By now in a typical transplant you are starting to wean off some of the anti rejection drugs and going down on the prograf. Savannah isn't cooperating. As soon as her #'s get to normal and show us they will stay there then we will start the weaning. We will have her Tach level back tomorrow to see where we are with that. We go for labs again Thursday. Today we replaced the NG tube for (hopefully) the last time. She is scheduled for surgery for a G-tube next Thursday. We go down Wednesday for labs and clinic w/ GI doc, another consultation w/ surgery and she should come back home Friday if all goes well. Tomorrow we go see our pediatrician for a good post tx exam and have her first day back at school for speech therapy. Sunday nioght at dinner we were talking about EJ going back to school, daddy going back to work and reassuring Savannah that mommy would be staying with her. She considered this for a moment and then told me she wanted to go to school. I was shocked but delighted! The next morning the 1st words out of her mouth were I want to go to school. She bugged me all morning until I finally talked with her therapist and set her back up. We will go slow with no pressure. Tonight we had our family Christmas. There were 11 of us and Savannah only had a couple of bad nervous spells. She really liked opening the presents and loved seeing her cousins. One thing Savannah has always had that she could count on were her Pinky Bear, pilly (pillow), and strawberry milk. I would flavor her metabolic formulas with strawberry for tasted & extra calories. She would go to bed with theses 3 things and be happy. Well, she has noticed the strawberry milk is missing. First 2 times I tried whole milk. Nope she didn’t like it. Yesterday I tried her Prophree (1 of the pre tx formulas) that didn’t work either. Today she wanted strawberry milk again and wanted to help me make it. We put in the strawberry powder and I poured in regular milk. She got very upset with me and told me in a rather disrespectful tone, “I do not like that!” I said OK I’ll drink it and proceeded to. That made her mad. She said put strawberry back. I didn’t know what to do but she clearly wanted her strawberry milk so I put water in it. She drank about an ounce and wanted more. I don’t know why because the cup was almost full but I complied and while she wasn’t looking added about an ounce of regular milk. She noticed with the first sip but I think she was to tired by that point to argue and ended up drinking about 2 oz. She isn’t eating anything and yesterday only took 3 sips of drink. I know I am doing the right thing by having the G tube put back in. We wanted to give her the chance at home to be able to start eating and drinking and we have. She isn’t going to for a long while. That is fine with me. I don’t really care at this point when she starts eating. Yeah it is disappointing because we were so excited about her jumping into new foods the way she was immediately post tx but it will come. She asked me one time if we were going to stay home. I said yes and she asked if we were all done at Donald’s House. I said yes for a little while. She always loved going there. I hope she gets over that fear quickly as we will be going back soon and often. When people ask me how I’m doing I tell them it’s like taking care of a newborn again. I am exhausted. Everyday there are errands of some sort and the late nights with minimal rest are catching up to me. I am tired... Thank you to everyone who is till sending cards. Savannah is loving it! She squeals with delight! Please don’t stop praying just because she’s home. She still - we all still need your continued prayers. Love you everyone!

Saturday, February 12, 2005 10:08 PM CST

It is so nice to be home! I want to thank everyone once again for everything you have done for my family. You guys have amazed me. I wish I could name everyone who sent a card, made phone calls, prayed, emailed, sold chickens, visited befriended us, made donations, etc. I could go on & on including people from France, the Netherlands, Belgium and others across the US whom we have never met. Savannah has touched people all over the world. She is a living miracle & witness of God’s divine power & love. So to everyone Thank You from the depths of our hearts. And to those of you whose lives have been touched by Savannah but you haven’t let us know, I pray that your life will continue to be enriched by knowing her story. Looking at my daughter now and knowing what her 4 & ½ years have been like I am amazed and so thankful that she is till with us today. She has brushed deaths door many times only to be brought back and all the while teaching us little & big lessons along the way. She is the youngest missionary I know.

Wednesday evening we arrive home around 5:30 pm. The ride was uneventful. Savannah was mostly quiet. I wish I had a picture of us 4 (Stan, Tiffany, Savannah & myself) packed into our little compact car. The trunk was stuffed totally, We even had to pull the cases of Pediasure out of the box and stick them in any hole we could find. The back glass had pillows & coats, in between T & Savannah was her pump, 2 pillows, a back pack, a couple of toys and Pinky Bear. Savannah’s floorboard had a huge box that was taller than the bottom of the seat so she had to prop her legs on it. My floor board had my duffle bag (which I transformed into a purse), a tote full of meds & a back pack. I had to hold another medium sized box in my lap. It really was funny. We had to leave all our food at Donalds, House, donated a few things like sheets, a pillow, laundry bags & detergant, etc. We just didn’t have enough room. All of that was after we had loaded Marlena’s trunk to the gills. Geez, we really do need another room for all Savannah’s stuff.

About a quarter of a mile before you turn onto our road you can sometimes see the wonderful cows that Savannah loves to feed apples to and would some how always get someone to give her ride to go see. She would always instinctively look for them from the hwy. So when we reached that point we told her to look for the cows. We did get to them and visited with them before we came home. She smiled so big when she realized they had all had babies! When we passed G’s house everyone was standing outside to welcome her home with a bunch of balloons. Needless to say we didn’t have room in the car so I had to hold them out the window till we got home. EJ was so excited & so was I! Him and the Grandma’s were waiting for us. Savannah was very scared/nervous about being home. It was like we had adopted her and she was seeing her new home for the first time. She held onto her Daddy’s neck with a death grip for the first 15 minutes or so. After about an hour she would sit in the recliner by herself quietly. We had yet another wonderful surprise waiting for us. Several people went into together and bought Savannah her first big girl bed. It was so sad to see her toddler bed broke down and ready for storage. Naturally she hasn’t slept in it yet and we probably won’t let her for a while. We will use the night feeding keeping her “tied” to the bed as an excuse. She would always sleep iun her bed and get in bed with us in the middle of the night. Now she can’t because of the feeding pump & tubes. (Good enough excuse for me) That way Stan & I will have time to adjust to our Baby Girl sleeping in a Big Girl bed. Thank you to everyone who helped getting her this beautiful bed!

After we spent an hour or so unpacking the necessities (I am still unpacking today- 3 days later) we had Christmas. This was a terrific ice breaker for Savannah and gave the 4 of us some quality family time. EJ has grown several inches since we’ve been gone and his pants that Santa brought are too small. His feet are growing too! He is only 1 inch shorter than me and he is so happy about that! After we opened presents we set up Savannah’s Dora tent and she loved it! We don’t know exactly why but she doesn’t talk loud at all now but while in the tent we did get a couple of little squeals from her. The rest of the evening was very tiring just trying to keep her comfortable, giving EJ the attention he so desperately needed and getting everything set up to start our routine with the feeds and meds for Savannah.

Thursday EJ went to school & Stan, Savannah & I went to the grocery store. We had pretty much nothing in the house to eat and no toilet paper!! For me it was a fun experiance. I was able to show Savannah all the food and we let her pick out some ice cream. It is funny because we seem to be reliving the days when we first brought her home after being born. We are having to be more germ concious again. We aren’t as tense with it as when she was first born but we know she will have to get sick (virus, cold, etc) before we know how ell she can handle germs. We did that with the citrullinemia and I know we can face it again. For her trauma issues I feel like it is important to get her out some and not shelter her from what she use to know as a “normal” social setting. I think it would make it worse if we did. So at the store I showed her the Kid Cuisines. I thought maybe the novelty of it would help her to eat. I told her that EJ use to love those and ate them all the time when he was her age. She looks at me and says, “EJ ate these when he got his new wiver?” (She can’t pronounce liver) I was shocked. Apparently she thinks all kids have to get a new liver? I just smiled and told her that EJ’s liver liked them and gave her a big hug. My Baby. How would a 4 year old comprehend all of this? In the store there is a movie rental section that gives away 6 oz cups of popcorn for the kids to eat. I would always let EJ go get some and stay away from us until he was finished eating so Savannah wouldn’t want any. Pre-transplant she loved popcorn but it had to be a certain kind and weighed so she couldn’t eat the store popcorn. I happen to remember it and got Stan to go get her a cup. It started snowing heavy outside so I just started focusing on getting the grocery shopping down so we could get out of there. When I was going down the last isle I looked at her cup and she had ate all but a few crumbs. I was so excited! She wanted anothe4r and ate a few more pieces of it. That was a great 1st post-transplant trip to the store. We bought a lot of food we normally don’t because we are so excited about her trying new foods. Unfortunately she isn’t as thrilled. The spaghetti Kid Cuisine I boutgh her ended up being ate by me. I would fix spaghetti a lot because she liked it pre-transplant. When I tried to get her to eat it from the Kid Cuisine she started crying. She told me she was scared. I tried to explain that it was just like the spaghetti I always fixed her and she informed me that no it wasn’t it. I felt so sorry for her and asked her if she wanted me to weight it out. I thought maybe the rule old habits are hard to break would apply but she didn’t want me to. I would have if it would’ve made a difference. As of today she is eating more. Everyday she will eat a little more than the day before but she is hung up on Trix cereal. Why? Who knows. Today she ate a couple of Lay’s chips, about ½ cup of Trix, a few bites of Fruity Pebble, a couple of fries and a couple of crunchy cheetos. At least she is eating! The veggies will come later! Right now we entice her with anything just to get her started and comfortable with food. I have been able to do bullace feeds since yesterday which frees her up during day of her pump. She can now tolerate a 6 ounce bullace! The meds are still on an every 8 hour schedule but hopefully next week we can try an every 12 hour. That will help me get more sleep along with getting bigger feeding bags so I’m not having to get up at 4 am to refill them. Today we were in the car and out of the blue Savannah says to me, “Did you know I got a new wiver and can eat bite bite now?” I said excitedly, “Yes you sure can!” She has visited Bree & T’s house and today visited Mamaws. Alone for a few minutes. She is doing better! She will sometimes still cover her ears when the phone rings and runs to hide in the bedroom if she thinks someone is coming to the house. Her respite nurse whom she loves has come by twice and Savannah is to scared to talk to her. It’s like we are all having to build our trust back with her. She will use the potty about once a day now and still using diapers the rest of the time. I have to weigh her twice a day, check her temp and blood pressure everyday and so far she is staying stable. We go Monday for labs. I am sure it will scare her again. She misses her port. She has a stitch in her transplant incision that apparently didn’t dissolve and is trying to work its way out. We have to get that out at some point. We go back to CH a week from Monday. Maybe we will get rid of another medicine! She is down to 8 now. 3 anti-rejection, 1 bile thinner, MOM (mag supplement), 1 to prevent PCP, 1 to prevent (CMV), (both lung related ) & 1 for ulcers. The majority of them I can give all together so I am only doing meds 4 different times per 24 hours.

Overall she is doing terrific! You would never know she was near death 1 month ago. As I have been going through her things I have been amazed at how much she got. Over 200 cards, over 40 stuffed animals, & well over 50 toys, books, puzzles, coloring books & collector items. She has been asked and accepted to be Eblen Charities ambassador this year! We will start more definite plans for her wish trip to Disney and will decide later if she will start Kindergarten this fall. Oh dear. EJ will be a freshman.... I am looking forward to a rough and exciting year! Love you all and I will be adding new pictures in the next few days!

Wednesday, February 9, 2005 12:06 AM CST

GOOD NEWS EVERYONE!!!!!!!!SAVANNAH IS ON HER WAY HOME!!!!!!!!!!!WE'RE SO EXCITED AND THANKFUL TO GOD FOR ALL HIS WONDEROUS BLESSINGS.HE HEARD OUR PRAYERS AND ANSWERED.WHAT MORE CAN WE SAY BESIDES THANK YOU GOD FOR YOUR WONDEROUS AND MIGHTY WORKS!

BREE

Wednesday, February 9, 2005 12:06 AM CST

GOOD NEWS EVERYONE!!!!!!!!SAVANNAH IS ON HER WAY HOME!!!!!!!!!!!WE'RE SO EXCITED AND THANKFUL TO GOD FOR ALL HIS WONDEROUS BLESSINGS.HE HEARD OUR PRAYERS AND ANSWERED.WHAT MORE CAN WE SAY BESIDES THANK YOU GOD FOR YOUR WONDEROUS AND MIGHTY WORKS!

BREE

Tuesday, February 8, 2005 9:26 PM CST

Well, as most of you know we didn't get our walking papers Monday. Savannah's potassium level was 5.8. They admit you at 6.0 & above. So the doc said one of 3 things in any combination or alone are causing it:
1. Prograf (one of her anti-rejection meds) side effect
2. dehydration
3. her system isn't use to getting so much protein
Her liver #'s are climbing also.

Her kidney function tests look great so they are not failing! We lowered her protein intake just a little, added a min. of 10 addition ounces of water, stopped all diuretics & lowered the prograf (aka tacrolomis)due to high tac level but may help with the potassium. We go back in the morning for more labs. If her labs are the same or better we go home for about 10 days! If they are still trending upward they will consider putting her on another med to help lower the potassium and just watch the LFT's for a little while. Her GGT and alkaline phosphate are still high but stable. Her T. Billi is great!

Clinically Savannah is doing great! I am hoping that she won't even need PT (physically therapy) when we get home. She is walking almost everywhere! She is still slow but getting there! Today we took her to a local park & I was chasing her (very slowly lol) and she actually tried to run! It would be the equvilant to about 3 fast steps for you or me. Her old self and independance is shining through! They had a big plastic rock with little steps and hand holds for the kids to climb. She wanted to & informed her daddy, "I can do it! I can do it!" And she did it! She scared me & T to death several times but I guess you have to let go of their hand at some point. She loved the swings and even went down a slide a couple of times. Tonight there were 5 therapy dogs at the house and we got a giggle out of her a few times. She is still having some problems with being traumatized. That is going to take a while longer. I took her into a public bathroom today to change her diaper and she literally freaked out. Scared her to death. I think she can't stand being in small rooms. She feels to closed in. Yes, she is still in diapers. I figure I will so the same way I did with potty training her and not push it. She will just start using the potty one day and be done with the diapers. Boy, I tell ya, her feet stink so bad now! She gets the least bit nervous and she sweats like a pig! We have fun smelling her feet. She thinks it's funny. Sometimes we do whatever we can just to see her smile. She is on continuos feeds through her NG tube. She still only drinks a few sips and eats only about 10f her total daily nutritional needs. Her metabolic docs think once she gets home she will do much better so we are trying to hold off on having the G tube put back in until we know that she has to have it. I am afraid that she will but this will give her another week or so of healing time before being put under again. I will update tomorrow regardless of the outcome! Love you all- Me

Tuesday, February 8, 2005 2:37 PM CST

Just a quick update. Savannah is doing well. She is keeping mom,dad and aunt t busy.She has a continious feed going and Renee gives her 8 diferent meds(some 3x aday) so she is pretty busy.She is doing much better at Mcd's house.She talks,smiles and laughs now.I just spoke with Renee and they are outside on the playground.Still having a problem with eating and drinking.

CHECK BACK IN TOMORROW FOR WHAT MAY BE THE BEST NEWS YET!!!!!!!!!AFTERNOON


vANNAH'S BREE


ain't God good!!!!!!!!!!!!!!


P.S.Coles Cove Church-Thank you for your continous loving prayers,for caring so much and your gifts to us. They were much appreciated and needed.

Saturday, February 5, 2005 9:08 PM CST

Hi everyone. This is T. Just wanted to give everyone an update on Savannah. On Wednesday, the alarm clock went off at 6am. Savannah was so frightened by it they she threw up. What a great way to start the day. She had to go for labs. She was very upset when we told her that she had to go to the hospital. We reminded her that all they were going to do is get blood and then she would come right back. She was ok after that. Her and Renee' saw a cart as they were leaving and were chasing it to see if they could go for a ride. She really liked that part. After labs she got to go to Walmart and pick out some toys. When she got back she was very tired. She did eat 14 Cheerios. We took her down for supper. She picked out what she wanted and sat down. Renee' fixed her plate and took it to her. She never would eat anything though. The whole time we are there she is looking around at everybody with the biggest eyeballs you have ever seen. She seemed to be so afraid of all of those people. But before it never really bothered that there were new people around. She would just kind of ignore them and go on. She began sitting herself up from a laying position all by herself. She became more trusting of us and would tell us when to change her diaper. She doesn't like the bathroom. She seems very scared when going into the bathroom. Renee' had taken in there for her to see all of her bath stuff and Renee' tried to put her down. Savannah had a death grip. They ended up taking her off of one of the diuretics. We were very glad. One less medicine!! On Thursday we just laid around. We were all very lazy. Savannah wanted to watch Barney movies all day. So we let her. It has been to cold to take her outside. We had a very inevenful day. She didn't eat or anything. Allthough at supper time she did want to eat. But when we got down there and she saw all the people she got scared all over again. We laughed and played that night. On Friday she had to go for labs again. She was not as upset about it as she was on Wednesday. After labs, Mamaw took her and Renee' to Don's and she got a hashbrown. She actually ate a couple of bites. And she drank about 4-5 ounces of Dew. When they got back she said that she had to go potty. She actually peed and pooped in the potty all by herself!!! After that she wanted to go shopping. So we said ok. We all got ready and left. We had to go to Sam's Club on our way to the Southpoint mall to get gas. We had a lot of fun. We played and laughed and had a good old time. Renee' pumped the gas and when she got back in the car her phone rang. It was Judy (transplant coordinator). She said that Savannah's potassium is very high and that we have to get to the hospital asap. SHe said that when your potassium is too high you could have a heart attack. But if it is to low you could have a stroke. She also said that Savannah was dehydrated. So we came back to Don's house got some stuff and took off to the ER. We were there for almost 2 hours before they started and IV or checked her blood pressure after the initial time. THey gave her a bolace of 250cc's of fluids over 30 minutes. They got her blood afterwards. Finally after about 5 hours we got moved to a room. It was on the sixth floor this time. We do not like it as much as the 7th floor. We had only been there for about an hour when she threw up. She threw up all the feeds that she had been given since we got to the hospital ( about 6 hours worth). We figured it was probably just nerves. Finally, a doctor came in at about 9:30. She said that Savannah's potassium had come down a little bit. And that she was more hydrated. They wanted to keep her on the fluids. Stan came down too. Savannah seemed very happy to see him. On Saturday, Dr. Andrionai came in to tell us that she was looking better. He kept his distance because of evil look Vannah was giving him. He said that the G-tube is a go, we just have to wait on the GI docs. Dr. Lichtmun came in a few minutes later. He said that her potassium had come down ever more, but it was still high. He said that as log as it continues to drop that she should be realeased in the morning. It also said the G-tube is a go. We will schedule the appointment on Monday when we go in for clinic. Hopefully it will be done in the early part of next week and we can all go home for a while. Savannah ate some marshmallows out of Lucky Charms cereal. And she drank a big sip of Sprite. As of now that is all that I know that she has eaten. She has conitnued to be in pretty good spirits. Mamaw and I took her for a walk to the Chapel and a while later we went to the playroom. After that she layed down and took a nap. Please pray that all goes good and that she gets out of there early tomorrow. Her daddy wants to take her to park that he found. Please keep praying. We will be home before we know it. Love all T

Tuesday, February 1, 2005 10:20 PM CST

Where to begin? I feel like I am making a speech! First I want to thank God for all He has done and for everything He is going to do. I want to thank my family. Without them I (we) would have never survived this journey. And of course to all of you- our extended family for your prayers & support in whatever form.

Yes, we have made it to Don's house. I was crying while packing to leave my safety net for Savannah and then bawling & thanking God as we walked hand in hand through the house. My Baby Girl has been through more than I could ever write about and still has such a long road ahead.

The following will be a description of Savannah as best I can out into words. She is so different now. And not so much in a good way. I realize that what she has been through and the 55 day hospital stay would have an effect on anyone. I just wasn't prepared fot the effect it would have on my baby.

The countanance on her face is that of a very sad & scared little girl. She doesn't talk now. Maybe the NG tube bothers her? She can walk about 20 - 25 steps now with only holding my hand for assistance. I want her to run. She can't climb steps without being held and pushed upward by her hips. She did 10 today and almost couldn't make the last one. I remember when she first learned how to "do" steps at our church. I loved watching her learn... not struggle. She only takes 1-2 sips of drink a day. Maybe she is so terrified of vomiting? Even when we ran feeds only at night and gave her the opportunity to "get hungry" she would not and will not eat. Has she forgot how to chew yet? Pre-transplant we would have her chew chewing gum all the time so she wouldn't forget. (you honestly can forget how). Can you chew gum with an NG tube? She loved to swallow it. I guess it would get stuck on the tube and then she would vomit. Oh well, we have tried since she's been here to get her to chew her favorite, Juicy Fruit but she won't. She was always terrified of leaving her room or even her bed. She is so scared. People at the house that have never seen her say she looks so scared. She literally can not tollerate more than 1 ml/ph feed or meds. It will come back up. Time. She just needs time. I put fear into her today. Fear that I said I would never do. I had no choice I had to put in my first NG tube after she vomited and the part in her tummy came out her mouth. I was so scared. She was so scared. I started to cry before I replaced it and had turn turn away so she wouldn't see me. I have to be brave for her. It takes 3 people to hold her down for the placement and has to be changed every week or it will cause sinus problems. I have to listen with a stethascope and make sure it is in the tummy and not accidently fill her lung with the feeds. Sometimes I feel like I can't do it anymore and then God will give me just a little more strength to push me forward. When she was born we brought her home on 2 very strange meds. Still experimental and had people thinking we were drug dealers because we had to weigh each dose of the white powder on a gram scale. The doses had to be exact and timing was crucial. Now she has 11 meds with timing being the most crucial on one. It has to be given every 8 hours just like when she was born. Most she takes twive a day, some three times, and one or two only once. They have to be spaced out but timed properly because of the vomiting. Rememebr, she can only handle 1 ml per minute, Some you can't take within an hour of another because of obsorbtion problems. She has to have 6 cans of pediasure per 24 hours. I will learn and conquer this. No matter what I will. Moms just do that for their children. Whatever it takes. She has grown a lot in the past 2 months. Really gotten taller and has only lost about 1 pound but the height makes her so skinny (like Noah, Angi). It is so strange to see. I can't get use to it. She is scared of all these people here. She still has to wear diapers. She has just learned how to sit herself up from a lieing position. It is so hard watching a child who use to love veryone and life so much turn into this little girl that acts and looks like she has lost all faith in this life. For kids it is suppose to fun and care free. She is having to learn much to early that is not how it is. I pray that she will regain her innocense and be the vibrant little girl we all know and love.

We have to be at the lab at 8 am tomorrow morning, Friday and Monday. 12:00 noon Monday we will meet with her long term care liver doc and if everything looks good we will go home. This sure isn't how I expected things to go but hey, it never is. One day when my mind is clearer I will write more about this journey. It is a story worth repeating.

Please keep praying for Savannah

Monday, January 31, 2005 9:39 PM CST

Hello all!! It's T. Thank you all for your prayers. Please keep praying as we are still not out of the woods (home). Dr. Lightfoot came in this afternoon with a few other doctors and one of the coordinators was there. He said to me that there is some good news and then there is some very good news. He asked which I wanted first. I told him I wanted them both. He said that the good news is that they have finally gotten the Tac level where they want it. That is Savannah's main anti-rejection med. THen he said that the very good news is that we get to leave the hospital tomorrow morning. YIPPEE!!!! Because Savannah is still not eating we will not get to come all the way home, just to Don's house (Ronald McDonald House). We are all hoping that a change of scenery will help Savannah to get some of her appetite back. We will also have to go with the NG tube. Renee' will be giving her bolace feeds of pediasure every so often throughout the day and at night it will be continuous until she begins to eat. We are hoping that either she will do really good and eat so that they can take out the NG tube or they will put a G-tube back in eventually. We have to wait for the Kagaroo pump (the pump used to feed her with) before we can leave the hospital. At that point we will leave and go to Don's house hopefully for only a few days. Savannah has a clinic appointment with the liver doctor and a GI doctor. Please pray that they can get the Kangaroo pump for us early and we can spend a good part of the day at Don's house playing and eating. Anyway, we will keep you all updated. And again thankyou to all of you who have prayed for this day. Please keep praying for the day we go home.
Love All
Aunt T

Monday, January 31, 2005 2:43 PM CST

Savannah is slowly continuing to improve! The GI doctors had nothing to add as to why the vomiting. Maybe it's a bug, maybe her tummy is having to adjust to so much protein, or maybe her tummy is so sensitive from the combination of all the harsh meds? Who knows? Hopefully it will run it's course and go away! She only vomited once yesterday so she is already improving. One of the tx docs cami in this morning and told Savannah if she would start eating she could go home. I wanted to smack h9im. How many times do I have to tell theses people that she has never ate enough to support her system. I guess they don't believe me or forget. Also, you can't bribe Savannah into going home or to Ronald's house. She is terrified to leave her hospital room. She thinks something bad is going to happen. She is getting her strength back again from the 24/7 feeds through the NG tube. Her liver #'s are trending down now. The cause? Who knows. The HYDA scan showed everything was normal so they are thinking that lack of nutrition is causing it or the fact that she has a cold now. Who cares as long as they keep trending down. So, the only thing keeping us from going to Ronald's house is the feeding issue. I remember a few days ago telling the doctors there was no way I was taking her home with an NG tube. I can't bear the thoughts of having to hold her down to put it back in when it comes out by accident. Yesterday, it bit me in the butt. I told the docs I would gladly take her home with an NG tube. ha ha I will learn and adjuist just like I always have. This morning the tx docs said they were going to look to her long term care liver doc for some suggestions. I doubt he will have any. This is going to be a several month process with Savannah of her learning how to eat and aquiring a taste for our foods. As long as we have an NG or GT we will be fine. Hopefully tomorrow they can give another us another goal of when we can go to Donald's house.

I Love you all and please keep praying for her.

Updates on other kids here at UNC:
Amber is only fighting an infection. The kidney is fine!
Mason is on kemo doses higher than that used for an adult. He started getting sick last night

We have seen several go home in the past few days and they were so happy. It is wonderful when they do go. It is so uplifting & encouraging to us.

Friday, January 28, 2005 5:17 PM CST

Today Savannah is showing signs of being weaker. The docs are going to put in another NG tube this evening. I am going to see if they will put in a ND tube instead until they can figure out the vomiting. She got to ride the tricycle around the hospital again for PT. She took a very long bubble bath and loved playing with the crayons and paints (thanks Sandra!). She stayed in the tub for about 45 minutes. She has vomited 7 times in the last 24 hours. The GI docs will be coming in tonight or in the morning. Savannah has tested positive for Hepatitis A. They will be doing more tests to confirm. Her Billi has climbed higher and the other #'s are staying about the same. Savannah will have another HYDA Scan tomorrow. The blood clot in her neck hasn't moved and they feel sure in time the body will take care of it. Her lungs are still doing well and she only drops down to the upper 80's sat while she is sleeping with the morphin and adavan on board. I can get her upright on my chest ing the rocking chair and that usually takes care of it. It is so nice not to be on oxygen anymore. Her temps have only risen to 100.5 but mostly stay normal now. I guess that's about it for now. So no, we won't be home next week.

Little Jaylin passed away this afternoon at 3:44 due to respiritory failure. Please pray for his family.

Some of you have shown interest in sending cards to some of the kids I've requested prayer for and I can't give out that info without the parents permission. I will see if I can get consent the next time I see them.

Until next time...

Thursday, January 27, 2005 9:34 PM CST

I feel so blessed with the progress Savannah has made! Some of you may have heard that a doctor said yesterday they were shooting for Savannah to go home next Wednesday. That is just a goal and goals aren't always met. In Savannah's case this goal will not be met unless she does a quick turn around. The docs made this statement yesterday morning before seeing LFT's. They are up... again. The vomitning has worsened today and as od now I have yet to get any of her pm meds to stay in her. The NG tube was pulled yesterday with hopes of that being the culprit causing the vomiting. Her temps have not been over 100.5! I still can't get over how skinny she is. She has lost 4 pounds in 5 days. Her abdomen is still big from the surgery but her legs and arms are tiny. She has never looked like a sick child because of all the calories we had to give her with the citrullinemia but niw she is starting to "look" sick especially if you include her yellow eyes. She got to ride a tricycle all around the groubnd floor of the hospital todayu! She loved it but it wore her out. This morning she was able to go from a lieing position to sitting up without help. She sat alone for short periods of time today & yesterday without falling backwards. She is overall making huge progress. Today she ate the most she has since being admitted - 3 crackers, 1 m&m and 6 pieces of popcorn! She still has a long way to go but I thank God for bringing her this far and I know He will bring her home!

The doctors have gave Little Jaylin 2-3 more days to live. Please pray for him & his family. Amber, the 4 year old kidney transplant looks like she is going into rejection. She needs your prayers. Her parents do not like staying here with her an dleave her alone alot. It breaks my heart for that little girl. She will cry cry all alone for her mommy. Mason will be starting his treatments tomorrow. Remember him.

I Love You all

Tuesday, January 25, 2005 10:56 PM CST

What an awesome day! I haven't wrote about our donor family until now due to certain restrictions. From the day Savannah was transplanted we were learning things of her donor and the family. The first of January we knew exactly who they were. I prayed and dwelled over this confidential but very much public information due to a TV interview and numerous newspaper articles. On Christmas day I wrote my thank you letter but never saw my coordinator to give it to her, to give to the Donor Services, which in turn upon request by the donor family would be mailed to them. So, after learning what I did I wrote another letter, included my original thank you letter and put in a couple of pictures of Vanna and mailed it directly to the family myself. I was nervous but knew deep down I was doing the right thing.

Savannah's donor was a beautiful 6 year old girl named Avery. She had a brain tumor and died within a week of diagnoses. While Stan & I were burying our twin sons in May of 1998, Avery was being born to give life to our Savannah 6 1/2 years later. Avery's mom & dad came to the hospital tonight for a family reunion with us. They brought tons of pictures and loads a great stories. I will never forget tonight. There are no words to express it. Thank you so much for sharing your lttle girl with us.

Mason came back today! Remember the 3 year old with the barain tumor and the cutest red hair? The prognosis isn't good. I talked with his dad and reminded him of what God had said to him. When he first brought Mason to UNC God spoke to him & told him Mason was going to be OK. From the experiance of the past 7 weeks I was able to tell Brad to remember that and stand on it. When things get so bad you think there is no way out remember that God didn't say it would be easy, just that Mason would be OK. Mason has a virus now & won't be able to start treatment until he is better. Please pary for devine healing and grace for the parents.

A 21 month old little boy named Jaylin needs healing. He was suppose to die a long time ago according to the doctors. He is still fighting for his life. I talked with his mom for a long time while looking at his photo album & I must say I have had it easy with Savannah. I could not believe the things this mother has had to do and went through. Please pray for her and the dad as well.


Last night (Monday night) Savannah's fever only reached 100.6!! No motrin needed just uncovered her & turned the room temp down! The vomiting has continued. The fevers were most likely from the gancyclovere.

As my mom keeps reminding me:

Saturday, January 22, 2005 10:15 AM CST

4:00 am the phone rings at Ronald's House. It's T saying Savannah's fever is 104.7 and climbing. Mom heads to the hospital. The docs go ahead and give permission for Motrin and after it kicks in her fever is kicked out! This morning the transplant doctor comes in and says we are almost definate that we know what is causing the fevers. It's the Prograf her anti-rejection medicine. He went on ahead and gave an order for Motrin every 8 hours. He tells us he and the cheif surgeon are still working on what to do. Prograf is one of the newer anti-rejection meds and probably the best as far as control and side effects. The doc returns later saying they have decided to give her body a chance to accept the Prograf. They feel like and are hoping that her body will get use to the med and the fevers will stop. Lets all pray that this will happen. Her chest xray looks better than yesterday! Her oxygen is now on 1! Her liver docs want us to push her hard the next few days. get her out of diapers, have her start taking more steps and in general doing more on her own. Except for the oxygen she is ready to go to the floor! I think of we can get her moving more her lungs will get stronger and fix themselves. So she is now in panties and has peed once in the pan! I brought in some snacks that our Sunday School class sent to us (thank you!) and showed the Hershey Kisses to Savannah. She started smiling as I reminded her of the time she was at Angi's and she sneeked her very 1st kiss. She ate it and loved it but was quickly forbidden again because of the protein. But today she remembered how good it tasted and quickly reached into the bag and proceeded to eat her first kiss that didn't have to be weighed or counted for [protein. If I remember right 1 kiss has .5 grams protein. So now I am off to Wendy's. She said she was hungry and wanted Burger King. It is so funny she calls a burger Burger King!

I just praise God for what he is doing. It looks like we truely may be on the right road this time!

Friday, January 21, 2005 5:29 PM CST

This morning started with xrays and they left her alone around 2:00 after finishing another bronc scope. Before the scope we were told that they wou8ld leave her intabated indefinately. Earlier they took ker off the oxygen mask she was on and put a different one that provides more support that helped her breathing not be as labored. This morning I spent time with her talking about things at home. Her car, turtles, piggy back rides, playing in the mud (which she insists she doesn't ever want to do again), her cousins etc. She was talking very good considering the night she had. I was very glad I soent that time with her then thinking I wouldn't get to hear her speak for who knows how long. I would have to revert back to calling my home answering machine to hear that sweet voice. You can imagine my relief & lift in spirits when they called and said they took her off the vent! They felt with this different mask she still had a chance! Thank You God for hearing prayers.

She has slept most of the day from being sedated for procedures. She enjoyed getting to see EJ so much. She asked him to come back!

Another answered prayer! EJ will begin his schooling down here at the school hospital starting Monday! He will get to stay with us as long as we are here! Thank You God again!

Marlena will be going home tomorrow (weather permitting) to work for a few days. She is worried about her clients going elsewhere never to return.

Mom & Tiff are good and will soon have the funds to stay another month. Thank you! (you know who you are)

Stan is not near as ill now that he got some sleep. My sis says to me this morning, "I'm glad you love your husband." While I was gone for 36 hours he wouldn't let anyone help, if they did they did it wrong, if they didn't offer to help then he thought they were of no use..... He is much better now and yes I do love my wonderful husband.

Please continue to pray for Savannah. The Docs are running cat scratch fever test and all the hepatitis, HIV etc that she could have contracted from the many blood transfusions. Her left lung has bronchitis in it and the right one they got some gunk out of along with old dry blood. Her breathing is still labored and short but better than last night. Please pray for the fevers to stop. The docs feel like they are not coming from her lung issue.

I love you all- Me

Thursday, January 20, 2005 11:56 PM CST

I'm back! Savannah spiked at 105.9 tonight. Now she is holding in the 96's sweating furiosly. As you all know (I think) she is not in rejection. Her lungs are continuing to go down hill again. The reason for all of this... your guess is as good as the doctors. Will update again tomorrow. please continue to pray for Savannah.

Thursday, January 20, 2005 11:46 AM CST

Hi all. Sorry we have not updated in a few days. Savannah is doing ok today. She had a rough night lastnight. She had a fever and was throwing up alot. The doctors are still wanting her to eat. She still does not have an appetite today. They of course still do not know why she is running the fevers. They are still doing all the cultures and of course nothing grows. They did multiple chest X-rays and ultrasounds yesterday. They thought that they had found the problem yesterday. They thought they saw the stint. Well, as all of you know Savannah passed the stint a few weeks ago. They did a heart echo today to look for vegetation (abnormal/foreign growth of tissue). It did not show anything. They are going to do a RSV test in a few minutes. Just in case, but they said that you have a very runny nose with the RSV. Savannah does not. I guess that is all for now. Please pray that we still get to go to the floor this weekend. And pray for a safe trip back for Renee' and EJ. It is supposed to snow alot here starting tonight. Aunt T

Tuesday, January 18, 2005 4:42 PM CST

Savannah's temp has been crazy all day. First too high and now she is 97.0 Go figure. The docs did 2 biopsies liver late this afternoon and she had two PIC lines taken out and two new ones put in. I know she will love having the one out of her neck but will hate having the "no-no" that prevents her from bending her right arm and the board that will keep her left arm straight. After she woke up she cried as we talked about what she had just went through. She was intebated again but it was removed after the procedures and was on oxygen through a face mask until about half an hour ago. Her sats haven't went below 95 so thats a great sign even though we can hear all kinds of junk in there. Stan just came and told me the xray is showing her right top lung is collapsed again. Joy-

The contrast for the CT scan is going through her NG tube now and will be finished at 7:00 pm. They will do the scan then. Also, we are waiting for the tech to a scna of all the veins in her body (similar to ultra sound) to check for any clots. This morning her liver doc said he doubts this is rejection but has no clue what else it could be. My gut says it is rejection but we won't know until tomorrow. Hopefully we will have some results tonight. There are more little details but I am to tired mentally to write about the negative anymore.

A very special THANK YOU to the 6th graders at Asheville Christian Acadamy! We received in the mail 3 large boxes packed full of fun stuff for Vanna and for EJ! When we go back home we have gift cards for the Family Depot and a restaurant for Stan & I! It is so nice to have something to look forward to.

I will be going home to my EJ tomorrow. He desperatelty needs me and I need him. I will stay with him at home until Friday and then bring him down for the weekend. It is going to be very hard for me to detach myself from Vanna but I have to.

Love you all.

Tuesday, January 18, 2005 3:37 AM CST

PLEASE PRAY FOR SAVANNAH. SHE HAS SPIKED A FERVOR OF 105.4. WE ARE CNCERNED ABOUT REJECTION. HER BREE,GM

Tuesday, January 18, 2005 2:48 AM CST

It is al most 4:00 am and Savannah's temp is now 105.4 depsite the cooling blanket, tylenol every 4 hrs., wash cloths etc. We have been battling it since about 9:00 pm when it hit 104.4 then lowered to 102.9 when I held her for a while lying on my chest. (yes I got to hold her!) As you all know we are almost to the dangerous temps. Please pray she doesn't reach them & if so that her brain will once again be preotected by God's almighty hand.

Monday, January 17, 2005 2:06 PM CST

Nothing much to report today. the biopsy will be tiomorrow instead of today. She has been running high fevers again & vomiting. Will have to see what tomorrow shows before we will know where we go from here. Lungs are still doing good!

Sunday, January 16, 2005 5:03 PM CST

I got to sleep with Savannah in her bed today!!!!! That felt so good to be so close!!

Savannah is down to one tube in her nose now! Just the feeding tube. The speech therapist worked with her today trying to get her to eat and drink so she could make sure nothing had been damaged from the breathing tube. Savannah is totally not interested in putting anything in her mouth. Her troat is very sore. Her chest x-ray showed that her lft lung has gunk in the bottom of it. We are ferverntly working with her on taking deep breaths whether it's blowing bubbles, a whistle or packing "popcorn". She is still holding onto a lot of fluid. Aparantly your kidneys start depending on the lasics to keep doing the work for them and it takes some weaning off in order to get the kidneys peeing again. She had to be put back on morphin again yesterday because her withdrawels are to bad for the methadone to control. Her liver #'s continuing to climb so she will be having her 3rd liver biopsy tomorrow to see whats going on. Please pray that she won't have to be re-intebated. Her lungs have made so much progress and I fear of taking more steps back. She has been running high fevers all day today (again). I feel like I keep repeating myself. We can get her to smile and she even chuckled a little today. Thank you to CLASS & Miracle Mail for the fun boxes you guys sent to Savannah. They are helping us to keep her entertained as she feels like it! The PICU docs wanted to take the line out of her neck today but Transplant said to leave it for now because of the possible rejection. So she is almost cordless again! Just the NG tube, blood pressure cuff, one IV and the central line! Lets all pray it stays that way and she continues to ionly decrease in the lines. She has only vomited ionce today and is tollerating 55 cc's per hour of pediasure. She is just really afraid to move at all because of it hurting but when she does and we ask if it hurt she says no.

Please pray for a 4 year old girl who had a kidney transplant last night. We all know how crucial the first 48 hours is. Mason will be back in a week to start his kemo as well as Britney. Please pray for a marriage falling apart because of the stress of their baby Destiny having heart surgery and complications. I could go on & on but I won't. Please pray a sepcial prayer for all the children here tonight and their families. Thank you all for praying for my family. Please continue to pray for Savannah a quick recovery and to guide her doctors witht he knowledge to treat her. Pray for EJ who has been through so much the past 4 1/2 years. Please pray for Stan & I. I love you all!

Saturday, January 15, 2005 2:31 PM CST

SAVANNAH SMILES!!

For the first time in weeks Savannah has smiled! All because of a jack-in-the-box her Mamaw gave her! As Stan said seeing that melted away all the pain from the previous weeks!

Yesterdays xray looked great indicating Savannah's lungs are healing wonderfully! The pressure was just dropped down to 5. It was 20 yesterday and she is still breathing comfortably on her own! Yea!! But you know Savannah, she has to keep these docs are there toes so now her liver is acting up. Her GGT is 2000+, alkaline phosphatase 800+ & billi is on a climbing trend. All these indicate a bile problem (leak or clot). The ultrasound yesterday looked normal so they did a Hyda Scan and it looks normal. The doctors say they are "pulzzed." This morning Savannah's ALT & AFT are starting to climb which indicate possible rejection. Joy. Here we go again. She is still on the prednisone taper so who knows. I haven't talked with the transplant team today and just found out I won't be able to until tomorrow morning. They have all went home to prepare to do a transplant tonight. So I am looking at it this way. She must not be in bad trouble or someone would be doing something. They haven't ordered any changes at all except to give fluids for vascular dehydration. We have had her smiling again today but only when we play with Jack. She is starting some occupational therapy and physical therapy today. Tomorrow she will start speech. So until tomorrow when I have more to offer...

Friday, January 14, 2005 10:03 AM CST

The breathing tube is still out! The docs were concerned that she may not be ready but she is doing super! Wednesday I gave out wrong info. I stated that her lung had opened and that her liver #'s were coming down. I apologize but that was wrong. But after they took the chest tube and breathing tube out they re-xrayed her chest to make sure no damage had been done and lo & behold her lung had in fact popped back open & was clear! Her diaphram had also moved back down where it was suppose to be! Last night the temp probe and folley came out. This morning her arterial line came out. I haven't got the results back yet from this mornings xray but I am assuming it is fine because she is on room air and her breathing isn't labored at all! She does have the nose piece still in just for some extra pressure support but nothing like the vent. She started vomiting again last night but we think it is due to the withdrawals. They are terrible. It effects her heart rate, blood pressure, temp, tummy shakes, you name it.

Today she has started physical therapy. The doocs are really pushing her fast. It is kind of scary. I kepp thinking she's not ready but she is doing better than I thought she would. She has been blowing bubbles which is keeping her coughing to prevent another case of pnumonia, she sat on the side of the bed (shaking uncontrolably) for a minute before the therapists moved her to a chair! The docs want her eating popscicles today. She has never had a popscicle. I don't think we will have much luck. She was refusing ice chips so I forced one on her lips and once she tasted it she was like a baby bird trying to get the worm from the momma. She ate on and then asked for juice! Her third time speaking since the tube was pulled was, "I want juice." She must remember that she was taking a liking to OJ! The first time she spoke was last night and it was when Marlena turned from her to wash her hands and she hollered as best she could, "Mamaw." The 2nd time was when we were getting ready to put her in the chair. She said, "I want to stay in the bed." She is very scared & cautious of anything right now. I did show her her Dora tent again and she almost broke out into a full smile! Haven't seen that in a long time.

So this morning they did another full ultra sound because we are still in rejection with the liver. I am so thankful she is doing so well. If she keeps this up we will be on a regular floor before we know it! Please continue to pray that we have no more set backs and can be home soon.

Thursday, January 13, 2005 9:42 AM CST

Happy Days are here again! Savannah will be excabated and the chest tube taken out sometime today!!! I will be able to hold her, she will be able to talk and there is a possibility that the docs will let her start a little bit of drinking!! I am soooooo excited!!!

I always liked this song but now it has a totally new meaning for me. It describes Savannah and I to a "t"!

Wednesday, January 12, 2005 8:12 PM CST

Savannah has had a great day. I am still in denial! She has vomited several times today. In my opinion they are pushing the feeds to fast. Last night they upped her to 35 cc's and by this afternoon she was at 45cc's. That's to fast. Her lung has opened! Yeah, no more collapse and her pep is 6 now! They are moving very fast with her and I just hope and pray she is ready. I keep waiting for nother bomb shell to hit. If she does well tonight they will have her weaned off the vent and the chest tube & breathing tube will come out tomoorow! That means I can hold my baby again! Liver #'s are still up but they aren't getting worse. Please continue to pry for all of us. Love you ALL!

Wednesday, January 12, 2005 3:20 AM CST

What a day! Savannah is still moving forward! As of midnight she is on 35cc's per hour of pediasure! This is the most impressive- 1 yes only ONE antibiodic!!!!! She of course still has a 9 page med print out but hey, at least we are getting rid of a few! No fever today, the percussion has been stopped due to no progress so every so often they disconnect the vent, pour some saline down the tube to induce coughing, put down a suctioning tube to suck out the gunk and have another set of hans there to "bag" her. It is really awful to watch because once disconnected she can't breath and has to wait on the bag to give her air. But we have to get the gunk out. Her xray of the lungs still look the same but her peep is now 9. Has been for about 5 hours now and she seems to be doing OK. They haven't suctioned since then to know if her lungs are bleeding or not. Please pray that the bleeding is over. Otherwise we take a few steps back again. Her body is retaining some fluid but not like she was. She is still on the lasics as needed. She opened her eyes a handful of times today but responded to questions with a nod of her head. A very special person sent Savannah a Disney Lullaby CD and we listen to it all the time! I asked Savannah this evening if she wanted to listen to her cd and she nodded yes right away. It has been playing non stop all night! (it is now 4:30am- I can't sleep) She does have thrush now which is terrible but can be treated. Yesterday I had so much fun telling Savannah what everybody has bought her for Christmas. I figure she's not going to remember I told her so I'm really not ruining the surprise. Her sugar was actually low today so they lowered her insulin. Her tac level is way crazy so tomorrow they will draw a level 1 hour before her am dose then an hour after, 2 hours after and so on to see if they can find the trend and figure out what is going on. She is on the taper of the steroids but her #'s are still high. She is down to 1 arteriel line, one central & one IV. Still has the chest tube, NG tube, breathing tube, folley & the themometer up her hiney. She is making progress! Thank you God for hearing the moanings of my heart.

So now for the rest of the story...
I decided today would be a girls day. Me, mom, T & marlena would go and explore the new mall. We did for a few hours until mom got a call that one of her friends had drove down here to see her. I thought that was so sweet. I go on up to the hospital where a fernzy is taking place. 2 rooms down a 15 day old little girl is fighting for her life along woth at least 2 dozen other people helping her fight. At 7:45 she passed away. That was so upsetting to everyone. I call EJ and he is almost hystetrical. He misses Stan, Savannah & me terribly. I am hoping to have him down this weekend. So that gets me upset on top of the baby passing and then Stan & I snip at each other. I am leaving the unit crying to go back to Donald's house when a mom I've met here chases me down crying herself. We just hugged and cried on each others shoulders and discussed the amazing amount of stress both our marriages are under. So after that I leave in Marlenas car & Stan is in our car (the loaner car rather) and I decide to ride around for a while and ended up back at the hospital. So here it is almost 5:00 am and I still can't sleep. Geez. But I have met 2 new families tonight that I otherwise wouldn't have. I really enjoy talking to everyone because we are all in the same boat. We know exactly the fears that each other are facing. We are our own support group.

I want everyone to help me pray for Mason. He is 3 years old with a malignant brain tumor. The have operated but were not successful in removing all the tumor. He will start his kemo in a week or so. This red headed little boy has touched me so much. his family is awesome and so strong. Please pray for them as well.

Marlena is awake now! Woohoo someone to talk to. Love you all!

Monday, January 10, 2005 4:54 PM CST

We have had 2 really good days. Hopefully Savannah is making her very slow turn around! She is now on 10 cc's of Pediasure p/hour. She has only vomited once today. Her liver #'s are still the same but that is better than climbing. The hepatic artery is back to normal!! Yeah! She has ran a temp most of the day today and shivers from lieing on the cooling blanket. The blanket is set at 66 degress and is holding her temp at 38.2 or so. Her top lobe of her right lung is still collapsed. The xray today looked a little worse than yesterday. They have started a new therapy that should help. It is called lung percussion and last for about 10- 15 minutes a session. They did this at 2 hour intervals from 10:00 - 2:00 and will now do it every 6 hours. They just did a chest xray to see if it is helping or not. The great news is that she is mostly supporting herself now. She stays at 95-100% O2 with 35% support, she is taking 15-20 breaths per minute with 10 b/min support. The peep is what is the most concerning. Normal setting is 5 and maximun is 15. Savannah is now at an 11. The peep is how much pressure the vent puts on the lungs which keeps them from bleeding. We have saw minmal blood from her lungs today and none in her belly. She will get there eventually. This is just going to be a slow journey home!

Thank you again to everything for everything!

Saturday, January 8, 2005 4:01 PM CST

What a wonderful day! I think Savannah really missed her fan club! (T, Bree & Mamaw) She has moved her legs and arms today and did her "talk to the hand" gesture to Mamaw once! Her hepatic artery looks better today, no change in her lungs, steroids are working to bring her rejection under control & her temp only got up to 100.4 last night and has stayed normal all day today! Yeah!!!! This morning she finally gave up and has actually been sleeping now for most of the day. She had been awake almost 48 hours. She still isn't tollerating Pedialite. She is only getting 5cc's (1/2 tsp) an hour but it comes right back up. Hummm But all in all she is doing so much better!!! Thank you all for your prayers.

The following is just an account of various events through out this whole journey that I want to share with you all.

I have always heard of sympothy pains from a husband while the wife was giving birth. I have never heard of a dad having those pains for their child until now. When Savannah was having her transplant Stan hurt the whole time in the area of his liver. On another occasion Stan was going to be brave and sit with Savannah through a central line placement. This consists of literally running a wire incased in a cateter through her vein up her neck and down to the main artery. When the procedure begun Stan had to leave because of the pain in his neck. The last pains he had were in his kidneys and I can't exactly remember what was going on with her at the time but thankfully her kidneys have held their own.

Savannah Cries. Yesterday around noon, out of the blue, Savannah's bottom lip pooched out and tears started falling out of her eyes. She hasn't cried not one time since she has been here. When she is in pain she cleanches her teeth and makes an awful face but doesn't cry. It was a very sad cry. She is tired of the place she is in both mentally and physically as you can imagine. I just laid on her bed and cried my eyes out. With the breathing tube in she can't talk and can't even make a coughing noise. It was a quiet cry of saddness.

T (AKA my sister Tiffany) has been awesome! I can't say enough about her. She has pulled 48 hour shifts without the first complaint. She will do anything, go anywhere, ask any question and question the compentancy of any nurse or doctor! All this without complaining. Thank you so much my little sister. I love you & thank you for standing by me!

I have only had to fire 1 nurse since being here. There have been a couple of Doctors I would like to fire but only because of their coldness. The nurse was, well, absent minded that day? It was the 2nd day she had Savannah and to make a long story short she threw away Savannah's anti-rejection medicine without giving it to her. Now you can imagine me digging through the trash and trying to justify this nurses actions. I couldn't. I was nice so don't worry but I will fire another one if need be.

A couple of days ago I thought I was to the point of halucination. I am sitting next to Savannah talking with the pulmanologist and standing at the door was someone I knew. Or was it? Yes, it was "doc Shearon" from Asheville!! She was on her way to Raliegh and stopped by. I was sooo excited. The pulmanologist had to come back later. Shearon, it was so nice to have someone here who knew our baby girl and knew our hopes and dreams for her. You will never know what that visit meant to me! I love You!

Oh, Yeah. I was going to fire the weekend night manager at the Ronald McDonald House but the House manager beat me to it! Darn.

Christmas Eve Santa came to Ronald's to give out gifts to the kids at the house. I made a point in being there by 6:30 so I could share the event with EJ at 7:00. I get there and don't see him for a while. When he shows up I ask him where has he been. He simply replies, "I've been helping Santa get dressed!" It floored me at first. That wasn't the response I thought I would get but then I realized how cool it was. Santa gave EJ his gift last and anounced to the other kids that EJ was one of his elves. EJ & Santa proceeded to the back room where he helped him get undressed. I thought that was to cool!

One more thing. Have you ever donated blood? Well, I have but I have never been approached about plasma and platelets. Savannah has had to have all of the above so I thought I would go and donate some platelets. It is about a 2 hour process that involves this huge 17 gauge needle. OMG I had no idea that needle was going to be that big! I thought they would have one needle in one arm to draw out the blood and a second needle in the other arm for the return. NOPE! They have a 2 in 1 needle! Lucky me. So anyway, your blood is made up of 4 componets. Red blood cells, white blood cells, plasma & platelets. In order to donate platelets you have to donate plasma to the platelet something to sit in so they don't just clot together. They draw you blood out (fast I might add) it cycles through a machine that spins out the platelets and plasma (very pretty yellow color) and then the left over are returned to your system. Pretty awesome preocess! Platelets are only good for 5 days after donated so get out their and donate some platelets! If you already donate, Thank You for helping save lives!

I've been here long enough. Stan probably thinks I've disappeared. Please keep praying that we are at the end of all the sickness and Savannah will continue to get better. I love you all.

Friday, January 7, 2005 6:44 PM CST

GREAT NEWS!
No temp since this morning and her liver #'s are coming down! I want to get excited but I'm scared to! Keep praying!

Friday, January 7, 2005 10:44 AM CST

"We don't know why this is happening. We don't know what it is." That's the latest from the docs.

Ultra sound showed the hepatic artery blood flow is way to slow. Billi is 4.8, AST & ALT are 280's. They just got through doing another liver biopsy and they are hoping it is rejection because they know how to treat that. If it is rejection hopefully they can get it under control and the artery will fix itself. The ultra sound showed more fluid in the belly so the pressure could be causing it or it could just be that it is collapsing on its own. Who knows. They cancelled the GI scope because they felt like she didn't need it. The bronc wasn't of too much help. They couldn't get the blockage washed out because they couldn't get to it. There was more blood in her lungs but they don't know if it was from the irritation of the salt water or if she is still bleeding. The collapsed part may have the infection in it. Her left lung had gunk in the bottom of it and they were able to get it out. Doing more cultures. Nothing yet. She responded well to the blood transfusion yesterday but her hemoglobin is low again today. Sugar is doing better. Stopping some antibiodics today and adding different ones. She is back on her cocktail for rejection which is going to suppress her immune system even more. Not good. As her night nurse said, we are on a tetter-totter. It can go either way. The cooling blanket helped her temp last night and she is holding steady with low grade temps today.

I'm sure I've forgotten something but that's enough for now. Please keep praying. Stan & I prayed last night that if God isn't going to let her live that He would just go on ahead and take her. She has suffered too much.

The grandmas & Aunt T will be back this evening. Thank you to those who are helping financially so they can be here.

Thursday, January 6, 2005 5:11 PM CST

No bronc today. She isn't stable enough. Bleeding from her belly again. Could be the NG tube aggrevating it, could be telescoping of the bowels, could be all these harsh meds on an empty tummy, etc... Temp is 38.8 right now. Was 40.0 (103.8) Hopefully tomorrow she will be more stable and can go through with the bronc. One of her airways is clotted with blood or mucus or something. They need to get it out. Also, if they can do the bronc they will do another GI scope to see what is going on in the belly again. Other than that no changes.

I miss EJ, I miss holding Savannah, I miss home.

Thursday, January 6, 2005 9:19 AM CST

103.8 fever for the past few hours, a nother IV, blood clot in the right lung, top of right lung still collapsed, another blood transfusion. Things just won't look up. They will be doing another bron scope today and will wash out her lung. More cultures of everything and anything. The docs are still unsure. Probably pneumonia even though they have been treating her for that already. Could be a rare typr and not using the right antibiodic? It is so hard for the docs to figure it out. She is still having belly problems but they think the lungs is where the money is.

Stan & I are alone. Everyone went home today. The money is running out. We all cried. Hopefully Marlena will get to come back Sunday after she crams in a few hair appoints for some $. Tiff- thanks so much for the baloons. I know Savannah isn't aware of them but they made me smile!

Keep praying for us. Love you all- Renee'

Wednesday, January 5, 2005 10:37 AM CST

Yesterday, Tuesday, Savannah had a rough morning but chilled out & rested for a better part of the evening. To look at her you would think she is sl;eeping all the time. We go by her heart rate, pupils, blood pressure and breaths per minute to know what she is actually doing. No real progress except for losing almost 2 1/2 liters of fluid. Her xray showed the top right lung all white which indicates collapse. They increased her ventilator pressure and hopefully that will open it back up.

This morning they started her on tube feeds again and quickly found out she isn't tolerating it. She is currently having the contrast for a CT scan going in over a 2 hour period so not to distend her belly too much. The scan will be around 1-1:30 this afternoon. The scan wasn't going to be until tomorrow and just for her lungs. But with the belly problem they decided to do it today.

Savannah has made headlines once again! You can read her article in the Hendersonville Times, www.hendersonvillenews. com under local or copy & paste the following link: http://hendersonvillenews.com/apps/pbcs.dll/article?AID=/20050105/NEWS/501050330/1042/NEWS01

Please pray for EJ. He has started back school and is missing his mom big time! I know God is going to see us through. He is faithful to His children. I love you all and thanks for EVERYTHING!
Love Renee'

Monday, January 3, 2005 3:57 PM CST

I apologize greatly for the delay in an update. I will pick up from Friday and bring you current.

Friday evening (new years eve) about 9:30 pm Savannah quits breathing again. It was even scarier because she was already on the ventilator this time. Heart rate sores to the 200's as dose her blood pressure. About 4 1/2 hours later they have her stable again. The docs have had so many tests done all to reveal not much of anything. Xrays, bronchial scopes, ultra sounds, CT scans, echos, not to mention all the blood work, cultures of everything, changing out central lines, pic lines, IV's. Sheesh. To make a long story short she had pulmonary hemoriging which just means her lungs hemoraged they also collapsed. They are using pressure through the ventilator to keep her lungs inflated and to hold back the bleeding. Makes sense to me. No reason why this happened. One possibilty is that the diapragm was damaged unknowingly during the transplant. Will have to ultra sound it if this problem keeps pursisting without any signs of getting better. She is carrying a little over 10 pounds of extra fluid again. Her belly this evening measures 74 cm which is about 29 inches. That is huge for a slim 4 year old. Her tummy is so hard and the skin is to the point of having stretch marks. I bought some lotion with vitamin E to use on her but it is good therapy for me. I feel like I am actually doing something to help her. You know how when you are on an IV and there are 2-3 bags hanging? Well, at any given time Savannah has well over 15 - 20 bags or seringes with meds going into her little body. They had to put in another IV last night because they didn't have enough lines in her. He central line is now in her groin area. That was the only place left to put one. Hopefully when they have to replace this one the veins in her chest or arm will be healed with minimal scar tissue and will take another line. She has an IV in her left wrist, an arterial line in her right wrist. I think the IV line in her foot is out but not sure. The ones in her chest & elbow bends are gone - for now. She still has her right lung chest tube, folley (catheder in bladder), NG tube down the nose and breathing tube down the throat, and themometer in her bottom. That part is kind of cool because we can keep a constant watch on her temp. Believe me it can shoot up to 102 & higher in a heart beat. She is on IV nutrition, lipods for calories, 6 or 7 antibiodics, lasics plus one other fluid med, around 10 meds for the liver itself and I don't know how many sedation and pain meds. It's terrible. They give her a med and then give another one to counteract the effects of the first one and so on.

Today, Monday, they started tube feddings. 5 cc's an hour. The first 2 hours she did fine. Then we were sucking it all out of her tummy again. She's still not ready. Her oxygen dropped down into the 80's, breathing becoming shorter and more labored, blood pressure climbling slowy as is her heart rate. Hopefully just from the 102 temp she spiked. Oxygen was increased as was the pressure. Hopefully we can get her back stable before she goes out of control again. They started stool softners today also. Last time they did that she ended up with non stoppable diarhea and telescoping of the bowels. I will suggest they go slowwer with that too.

She is kind of in and out with her alertness. She will slowly nod her head yes or no to questions (sometimes). She loves for her hand to be held. Right now that is the only reassurance she can have as far as physical contact goes. She can't be held and we can't lay with her in the bed like we use to could. All in all I am better rested and am leaning on my faith totally once again. When you end up exhausted it is hard to do anything! I can see the light at the end of the tunnel! It is just going to take a while. My uncle Richard said it best. "The miracle of Savannah a new liver has been performed. It is complete. Just like when Christ saves us. The miracle of salvation is complete. But God didn't promise there wouldn't be bumps in the road with or spiritual life or our physical life." Savannah just has to get over these bumps right now.

Thank you again to EVERYONE! The cards, calls and donations are so appreciated. But please remeber the most important thing we need, prayer. Love you all.
Renee'

Friday, December 31, 2004 7:05 PM CST

Savannah has had a restful day of sedation and pin meds. Her chest xray this morning looks better. Still haven't heard from the ultra sound and heart echo. This evening she is going to be put on a "regular" ventilator and hopefully they can do the camera in her lungs and CT scan tomorrow. That's about all I've got for now. Love you all- Renee'

Friday, December 31, 2004 2:53 AM CST

It is almost 4:00 am. Savannah's blood pressure and heart rate have come down dramatically. They are in the "comfortable" range as well as her temp. Please keep praying. This morning will be a morning of several tests just trying to figure out what caused her to stop breathing. She is still on the life support and we don't know for how long. I do know they want to try and get her on a regular vent today if tollerable. She is swollen all over again but not as bad as the first time. Her abdomen is huge. The biggest it's been. The Osollator forces everything down into her abdomen off her lungs so it can expand them fully.
I do not know if we are going to end up losing her or not. For the first time last night I was truely scared in my heart that God was going to take her on. In the elevator up to her room all I could do was just keep saying, "No God, No."
Marlena, Angi & Tommy made it down safely. Tommy is snoring his head off in the waiting room, Marelna is at Don's house with T & Bree, Stan is in the parent room sleeping, & Angi is staying with Vanna. I am going to try to lie back down for our busy day today. Please continue praying for her. With her immune system being suppresed she is catching all these unidentifiable virus/infections that you or I can fight off with no symtoms. The docs haven't had any luck since her transplant identifying anything and therefore they don't know exactly how to treat her. I knew transplant was going to be a hard road but geez... It just won't let up. If she were to start getting better tomorrow we would still be down here 2-3 more weeks minimum. I was hoping to at least be at Don's house by now. Oh well. There is a purpose. Love to you all and keep praying for us.

Renee'

Thursday, December 30, 2004 9:37 PM CST

What a night. It is Tiffany again. Things have finally calmed down some. When Savannah stopped breathing, they went in and started bagging her. They also decided that they should suction, that maybe it would help. They got alot of phlegm out but they got blood out as well. They said that her right lung had collapsed and they put her on an oscillator. They began doing the cultures again. Tomorrow they will do an ultrasound on her tummy even though they think it looks fine. Also, they will go in and do a bronch. They said that is where they go into her lungs with a tube that has a camera on it. They will be able to look around and squirt some fluid in and then pull it out so they can do a culture on the junk in her lungs. I think that they are going to be doing the scope thing again too. The last I checked her temp was about 102 or 103. Please keep praying. We need all the prayer we can get right now. Daddy and mommy need prayers too. They are having a hard time. Daddy was here alone when she quit breathing. I am sure you all can imagine what that scene probably looked like. Anyway, please keep us all in your thoughts and prayers. May God Bless You and Your Family. Aunt T

Thursday, December 30, 2004 8:13 PM CST

SAVANNAH QUIT BREATHING AT 6:45PM. If you want the latest update please call her room. 919-843-1159

Thursday, December 30, 2004 12:16 AM CST

The new PIC line placed yesterday was in too far. They pulled it back and we found out a little while ago that they pulled it back to far. You can't just push it back in because of infection so she is getting yet another new PIC line. They are going to try it without sedation this time. They have started her back on the pain medicine she is withdrawing from and hopefully that will be enough to keep her calm. Her breathing is not improving. If anything it is getting worse. Even being on oxygen her levels are staying in the 80's more now than in the 90's. She has vomited once since my last post and she has terrible dreams while napping. Her nasal passages are so sore from the oxygen tubes. She hates it and jerks it off every chance she gets. So, that's about it for now. Love you all. Me

Thursday, December 30, 2004 9:54 AM CST

Just a quick update for everyone. Savannah is having terrible withdrawals from the pain medicine. They are actually going to give her a small dose of it to help knock the edge off. She has the sweats, uncontrolable shakes, diarhea, vomiting (may be from coughing up flem and getting strangled on it & the ng tube?), temperature (may be from the pressure on her lung or the numerous antibiodics she's on?), and very irritable. They just took the ng tube out in cause she is getting strangled. That means we will be back to PO meds. That is great news on one hand and on the other....I got to hold her in my lap for the first time in ages today. She felt so good. I still can't get use to her "odor" not being there. She always had an ammonia and medicine smell before the transplant. She didn't want to get out of the bed but I did it anyway to help her with her breathing. She got mad at one point and said in her very hoarse voice, "I want to walk that way!" She wants to leave! I would too! So we sat her in the floor and she held on to the side of the bed for 2 or 3 minutes! She is so strong willed! Hopefully she won't have to have to much physical therapy once she does feel like getting out of the bed. Her belly is still very swollen and putting pressure on her lungs. It hurts her to breath and she will not take deep breaths. Her right lung is partially collapsed so we will be working on repositioning the chest tube and getting her upright more to help clean it out. As far as her liver goes, it is doing great! Some #'s are normal and the others are still coming down! Please pray for her breathing. It is very labored and they are trying to put off replacing the breathing tube and putting her back on the ventilator. Thanks to everyone for everything! You guys have been great!

Love & some smiles today- Renee'

Wednesday, December 29, 2004 7:34 PM CST

It's T again. I just want to think everyone for all of your prayers. There have been many days where we could not see the positive side of things. And on those days it is hard to pray. I have always tried to believe that God is here doing his job. I have always tried to hold onto the hope that Savannah will get better. I think I have done that better than Renee'. She has had a very hard time. She is still trying to get rested, but we all know how that is. It is hard to do when the one you are here for is not doing good. Or is doing good but you are so tired that you know you need rest. Alot of the time I can't sleep because I want to be here with her. And Lord knows how bored I get at Don's house. But anyway, Savannah has had a good day today. They pulled the breathing tube out early this morning. She has been on clear liquids, Sprite. We had to stop letting her drink because they had to put a new PIC line in today. They did an X-ray to see if it was in the right place, it wasn't. So they cme back and pulled it out some. They did another X-ray, but they could not tell anything. The end of the line is sitting on Vannah's ribs. So they cannot see the end of it. They are going to do another X-ray in the morning and hope that she will ahve moved around enough to move the end of the line off of her ribs. She has had many bowel movements today. They did a culture on the first 3. We only know that there was old blood in them so far. They are weaning her off the fentanyl(?). It is a pain reliever. So she is having some withdrawals from that. Her tummy looks a bit swollen and her breathing is shallow and seems a bit labored. They have a million possible explanations for that, but can't pinpoint one right off the bat. She is still running fevers. Nothing new there. They are still hopeful that we will get to move to the floor this weekend. Maybe they will allow her to begin eating (or drinking) different fluids soon. We will have to see. Her tummy does seem to have calmed down alot though. Again, I think everyone for your prayers and please keep up the good work.

Tuesday, December 28, 2004 1:38 PM CST

Hello everyone. This is Tiffany. I have some good news. The doctors said that they were going to begin weaning Savannah off the sedation this evening and by morning they will pull out the breathing tube. Hooray!! She will be able to talk to us again, and get that water she so desperately wants. She has begun passing gas. The docs say that is a good sign that there is no intessuseption (telescoping of here intestine). They said that if she was not passing gas then that would mean that there is a blockage in her bowel. But with the air passing through, she is open. They were happy to hear that she is passing gas. Her electrolytes are still a little messed up, but they hope that they can fix that through the night. They are giving her those supplements through the IV. They will begin tomorrow giving her some food through the NG tube to see how it settles on her tummy. But they are very hopeful that it will be ok. Also, her numbers are more normal today. Her AST is 34. Normal for that is 20-60. Her ALT is 64. Normal for it is 10-25. It has always been higher than the AST. Her Bilirubin is 1.8. The normal for it is 0.0-1.2. That is about the lowest her Bili has been this whole time. I am so glad that things are beginning to move in the right direction. It makes me feel so much better and not on edge like we all have been. Renee' thinks that we will stay in PICU for another week or 2 and then we will go to the floor. We will hopefully only have to stay there for a week. But will just have to see how things go. I am hopeful that it will not take that long.

Sunday, December 26, 2004 6:19 PM CST

Savannah is getting a new PIC line put in her neck/chest as I type this. The doctors are bumfuzzled about this new infection. No clue as to what kind it is. Taking the old PIC line out is precautionary. The GI infection has never been identified either so we don't know hopw long it will last. She has had an allergic reaction to one of the antibiodics but she has no choice but to suffer tyhrough all the itching. She has to have it. Benydryl isn't working anymore. We will try something else. She will get another ultra sound tomorrow and if her intestines look good they will push to excubate her. Her lower abdomen is showing outward signs of internal bruising from all the rough handling of the intestines Friday. They handled them a lot intentionally and really roughed up her whole abdomen just looking around. Her liver #'s this evening are looking great. The Billi & GGT are still high but coming down. The ALT & AST are pretty much normal! So, thats about it for today! Love you all

Sunday, December 26, 2004 12:26 AM CST

DECEMBER 26, 2004

Savannah had a restful day for Christmas. She did end up needing more blood and spiked a fever of 102 last night. They suspect an infection in the PIC line. It will come out today and a new one put in her neck or groin. Wherever they can get one. They will let her rest again today and do another ultra sound tomorrow. Hopefully her intestines are behaving. She has about 11 pounds of fluid in her right now. I will be glad when the swelling starts to go down. Her ALT is 99 and her AST is 34! Now if we can get everything else to work right! Please continue to pray for us all. This has been a hard journey.

Saturday, December 25, 2004 10:04 AM CST

MERRY CHRISTMAS!
SAVANNAH MADE THE FRONT PAGE OF THE ASHEVILLE CITIZEN TIMES
www.citizen-times.com

Susan, I can't tell you what a super job you did on the article! Thank you for making my Christmas!

Savannah had a restful night. She is so swollen. They are now giving her lysics (sp?) to reduce the fluid buildup. They are hoping to be able to excabate her this evening because she is really hacking. No ultra sound today. They just want her body to rest and try to recover some. The ultra sound tomorrow am will show if she needs another intestine surgery. If so, she will be intibated again. Her chest xray this moprning is OK. Since puttting in the bigger chest tube it has already drained another 300 cc's. She has drained a total of 1200 cc's so far. Her AST is in the 30's! Her ALT is 150! That is so encouraging! Hopefully she will have a restful & calm Christmas.

Jay & Jasmine. Even though she can't play with her Dora tent I brought it to her anyway. I had to! That is the only thing she wanted for Christmas. We opened it and showed it to her and I know she can't wait to play in it! Thanks again so much!

EJ has had a great Christmas considering the circumstances. Except for his Grand-mama being an indian giver! Ha ha (had to through that in)

So here's wishing everyone a very Merry Christmas! Thank you God for Jesus! Happy Birthday.

Friday, December 24, 2004 2:26 PM CST

Savannah is out of surgery. Almost 3 hours. They did what I had already explained. There was a part of her intestine that is swelling. If this happens again and the swelling doesn't go down they may have to cut that section out. Please pray it doesn't get to that. That would be very dangerous. I am waiting for her to return to her room.

Friday, December 24, 2004 12:21 AM CST

DECEMBER 23, 2004
This morning Savannah's ALT & AST dropped dramatically! One was in the 200's the other in the 400's and total billi was normal! Thank you Lord. This afternoon her biopsy results show mild rejection still but better than the last biopsy. The breathing tube came out last night but had to be put on 50% oxygen. There is still a lot of fluid around her lung that the tube aparently can't reach. She has been sedated with pain meds all day but will nod her head yes and no and give your finger a little squeez every once in a while.

FRIDAY DECMBER 24, 2004 CHRISTMAS EVE

Savannah is in surgery as I type this. Her small intesting is telescoping (intussusception) again. A larger place this time. They will for the 3rd time reopen her peace sign incision and handle the whole intestine to resolve this issue. It could happen again. So, the breathing tube is back in. Hopefully they will be able to close her. They may or may not do another liver biopsy. They will do one of two things with her chest tube. Leave the on ther in place but reposition it or take this one out, put in a begger one higher up to reach the fluid. This will hopefully be only a 2 hour surgery. If so she will be done at 2:30. Her liver numbers this morning were continuing to go down! Thank you God! I held her hand as we walked to the OR for the 7th time in 15 days and she told me (first words spoken in a few days) "they gonna take a pic of my chest." She was trying not to cry as she said it. She has xrays, ultrasounds almost every day. She is learning it and expecting it. She is very scared now where last week she wasn't. This is killing me. I can't stand watching everthing she is going through. I love her so much and miss my baby girl so bad...

EJ is here with me now and we spent the day together yesterday. We pigged out at Apple Bees and then I surprised him with a $100 shopping spree at Toys R Us. It did my heart so much good to see him smiling & excited. He is hurting so bad in his heart for Savannah.

I reminded Savannah today that tomorrow is Jesus' Birthday. Before the transplant she had told me Jesus needed a cake and baloons so I ask her if we should get Jesus a baloon and she shook her head yes.

I hope everyone has a great Christmas.

Wednesday, December 22, 2004 9:28 PM CST

Please note that Savannah has a new room number. 2C05 in the PICU-

Savannah had surgey again this evening. Was her 6th one. Her small intestine has lipnodes on the wall that were swollen and the intestione thought it was food. It was trying to "eat" itself in 4 different places. This is very rare and can only be fixed with surgery. They were able to clear out a lot of the fluid in her abdomen but they expect her to have another build up. They used the same "peace sign" incision and were able to close her back up. They also did another liver biopsy and ultra sound afterqwards with everything looking nice. They will keep her sedated for another 24-48 hours because they expect the intestine to do the same thing again until the GI bug runs its course.

Tommy, Angi, Preacher Paw & EJ are with us toninght!! I have missed EJ so much and he was really needing to see his sister. Angi & Tommy are staying with Savannah tonight so all of us can try to sleep.

Papaw anointed Savannah with oikl and as he prayued Savannah fought through the sedation and moved her foot the whole time! Afterwards Angi & Tommy were talking to her and she actually opened her eyes a few times and tried to turn her head towards them.

Last night Savannah's nurse picked out a beanie angel bear for Savannah. I ask where it came from and was told that a family who recently lost their child donated a ton of beanie babies to the hospital. It was our donor family. I can't wait until I have time to write the donor letter.

I have had several complaints of not updating enough. If you all were here you would realize the time and energy it takes for all of us to care for Savannah, support each other and make each other sleep or eat, etc. Their is only one computer availibla & all the families here have to share ot. Sometimes it's just not availible.

Jay & Jasmine, thank you so much for buying and mailing Savannah her gifts. She will love the Dora play tent! I am saving it for when she will feel like playing in it because that is the only thing she asked for Christmas and thanks to you two she will have it!

Stan came down again today. I don't know when he will be able to get back to work and I have no clue how much longer we will be here. Please keep us in your thoughts and prayers.

A church youth group "Sudden Impact" came through the PICU tonight giving out stockings for the kids. Thanks guys! It helped to lift our spirits & Savannah will go crazy over the scarf!

Love you all- Me

Wednesday, December 22, 2004 9:31 AM CST

DECEMBER 222, 2004 10:32am
Savannah is in the PICU. We have till this afternoon to be moved out of our room on the 7th floor. The hospital is running out of rooms. Earlier we were preparing Savannah for her 6th surgery to have her appendix removed, another liver biopsy, a good cleaning of her abdomen & possibly the cutting & removing a portion of her colon. The docs at the last minute decided not to operate. Right now it is too dangerous. They do not know for certain that she has CMV or appendicitis (spelling is terrible. If they open her up now they won't be able to close her and the risk of infection is too great. Also, they are concerned of her bowels leaking. If that happens the doc said it would be a huge negative in her favor. She probably wouldn't make it. So he said they will do a bedside ultra sound to get a better look at the appendix. He also said this isn't something he waould say, "I'll see how she's doing tomorrow." It is an hour by hour thing. He said don't be surprised if in 3 hours we do open her up. They are re checking the previos biopsy to figure out if she truely was in rejection or if the numbers were reflecting the virus she has. When they started the IV antirejection med they also started an anti virus med an don't know which one was helping her numbers. Today her numbers aren't better but they aren't worse. If she shows any signs of getting worse they will go to the OR. Hopefully we can ride this out and whatever is going on will resolve itself without another surgery. They will start weaning her off the sedation in a little while and let her wake up! Please remember us in your prayers. Merry Christmas

Tuesday, December 21, 2004 9:37 PM EST

Renee' here- WOO-HOO great news! After vomiting up old blood all night, being put on 4 more IV antibiodics, bolus ofter bolus of fluids, continuing to swell in her belly and be in pain, letting a new IV be put in, being NPO all night, waking up to a PIC line being put in, struggling to breath through the light sudation, having an NG & ND tube placed while alert, 2 chest and abdomen x-rays, being put on general anethesia, a catheter to drain fluid off her right lung (you could only see a small top portion of it) , a scope of her bowel,receiving plateletts (spelling is terrible) and currently in an MRI.... they have found the source of infection!!!!! The scope showed major infection in her tummy and discovered the GI infection is from her mouth all the way out the other end to her butt-hole! Isn't that great! Not the infection of course but now we know what we are fighting. Now we can biopsy this stuff and find out exactly what it is and treat it! The docs said that draining the fluid off her lung alone will do wonders for her. We will hopefully have my smiling, demanding baby girl back in a couple of days. Then we can start playing with food again!! She will be in the PICU at least over night in case of needing blood or anything happens out of the ordinary and if all goes well we will be back in our normal room tomorrow.

Monday, December 20, 2004 8:51 PM CST

Hello again. It's T. Just wanted to give another update. What a night and what a day. Poor Savannah. The doctors ordered a strep swap this morning. It was negative. Which is good. Her throat does not seem to be hurting her as bad today. She is talking alot more. Although Renee' said that she had problems getting her to take her medicine because she would hold it in her mouth forever. Also, the docs said that her numbers were still coming down so they are going to let her rest tonight again from the Thymoglobulin. For anyone who does not understand why they put her on that suppressant, I asked Renee' and she said that it was because the rejection was that bad. They ordered a whole CBC today. Her white blood cell count is low. they said that that was a good sign that her immune system is suppressed good. Vanna's tummy started swelling from the prednisone. Today it had started getting hard. It hurt her when the docs felt of it too. They at first told us that that was a sign of internal bleeding, but then they found out that she hadn's really urinated in a few days. They ordered at bladder scan. It showed that there is about 300cc's of urine in her bladder. So guess what? They had to put a catheter in. Some has come out but not alot. The nurses got some of it and are sending it off to be cultured. They had to take the IV out of her right arm, at the bend, because there was a fluid build up in it. So they had a PICU nurse come in and put a new one in her left hand. They sent the bad IV of to be cultured. Can you tell that they are looking everywhere for some kind of an infection or something? Speaking of that, her port grew something. We found that out today but don't know waht it was. They are doing a double dose of antibiotics tonight. Someone came in earlier today a did a heart echo. Renee' said that the lady who did it seems to think that everything is ok. But she said that a doctor and a cardiologist will have to look at it further. Tonight at some point they will be doing a CT scan. We are pretty sure it will be of her whole body. Like I said, they are looking everywhere. They will be giving her the dye stuff by mouth (?) and by IV. They are wanting her to drink about 12 or 13 ounces. Yeah, right! I tried to give her the night meds and after the second one made it part way down she threw up. Yeah, we are back to the lovely vomiting. Well, she hasn't thrown up anymore, but she is definitely not happy with me. They may have to put the NG tube back in tonight instead of waiting til tomorrow. Tomorrow they are going to put in a PIC Line. That line will enable them to draw blood and run the IV all at the same time. Which is could because she just cries when they come to take her blood. She will have to be sedated for this procedure as well. What fun! One more thing they were talking about doing is to go into her colon and see if there is an infection there. They did a test on her stool to see if there was blood in it because it was so dark. There was. The other reason why they are wanting to do it is because the day they started giving her the stool softener is when the diarrhea started. She is still having diarrhea today. The docs were not aware of that. So depending if they cannot find anything in any of the tests or cultures then they will go on ahead and do the colon thing. I hope they find something soon. It is so hard watching her be so miserable. We moved to a new room tonight. It is bigger. Oh yeah, Savannah has started feeling so bad that she has quit walking to the potty. Renee' said that she is so sore and weak that she couldn't even get up off the couch today. Renee' had to carry her. She is still not eating. And the docs said that because of all the diarrhea she is a little dehydrated. She hasn't felt like opening her mail in a few days, but please keep the cards coming. When she gets better she will be so excited. She loves getting mail. Also, I was looking for the new pics too. I could not find them either. I asked Renee' where she put them and she said in the SLIDE SHOW. She said these computers would not let her change the ones in the photo album. I wish I could see them but this computer will not load the slide show. Weird. But anyway, pray that we have a better night, no fevers and lots of sleep. Please keep praying. I am still trusting the Lord, he told Renee' to. Everything went to good for something bad to happen now. Well, I am going to go and see waht kind of torture they are putting her threw now.

Sunday, December 19, 2004 10:09 PM CST

Hello everyone. This is Tiffany. I wanted to give everyone an update about what is going on at the moment. Savannah is acting like she has flu like symptoms. She seems to achy, miserable, uncomfortable, feverish, and she can't sleep that good. We decided to give her some Tylenol at about 10pm. At about 10:30 the nurse checked her temp and it was 100.7. She paged the doctor and he is looking to see if they need to do any blood cultures tonight. Also, he said we could give her some benyadryl to help her sleep. We cannot tell if there are sores in her mouth or if her throat hurts because she will not hardly drink anything and when she does she cries. Also, I noticed that her belly looked swollen. The nurse felt of it and said that it is soft. That's good I guess. The nurse and the doctor are figuring that Savannah feels like crap because of everything that she has been through. They said that it amy have all caught up with her and all the medicines she has been on has not helped her any. She just looks so miserable. Please pray that we will have a good night and that tomorrow will be a much happier, brighter day for her.

Sunday, December 19, 2004 10:09 PM CST

Hello everyone. This is Tiffany. I wanted to give everyone an update about what is going on at the moment. Savannah is acting like she has flu like symptoms. She seems to achy, miserable, uncomfortable, feverish, and she can't sleep that good. We decided to give her some Tylenol at about 10pm. At about 10:30 the nurse checked her temp and it was 100.7. She paged the doctor and he is looking to see if they need to do any blood cultures tonight. Also, he said we could give her some benyadryl to help her sleep. We cannot tell if there are sores in her mouth or if her throat hurts because she will not hardly drink anything and when she does she cries. Also, I noticed that her belly looked swollen. The nurse felt of it and said that it is soft. That's good I guess. The nurse and the doctor are figuring that Savannah feels like crap because of everything that she has been through. They said that it amy have all caught up with her and all the medicines she has been on has not helped her any. She just looks so miserable. Please pray that we will have a good night and that tomorrow will be a much happier, brighter day for her.

Saturday, December 18, 2004 12:06 AM CST

Tears and more tears. Check out the new pics. Savannah's liver function numbers are coming down. Thank you Jesus! She is still very sick with her AST & ALT still in the 1000's but at least we are headed in the right direction! No ultra sound today. The docs even had her NPO for a reopening today. That is how worried they were! Keep it up Baby Girl. I know you are just training them and letting them know you aren't the typical case and to look out! I love you. You are so very special....

Friday, December 17, 2004 4:02 PM CST

Non-responsive steroid acute rejection. Those are not words you want to hear but they were said today before the ultra sound & biopsy results. The following is a run down and excuse any mispellings.

Wednesday Savannah's prograf levels were still low. We were still in the tweaking stages with her meds. Today the prograf is right where it needs to be. Wednesday night is when the rejection started showing up in her lab #'s. They went from 200's to 700's by Thursday morning. Ultra sounds (every day) still showing good blood flow & no leaks. The initial thinking was that the prograf being low allowed the rejection but when the #'s climbed so aggresively they decided to treat the rejection with steroids. A 3 day run at first but will now be a 4 day run. You normaly see the #'s coming back down after the 1st or second pulse of the steroid. Savannah has continued to reject aggresively despite the steroids. Without the steroids her #'s would be even higher. Last night they were 1100 and this morning 2200. (ALT & AST) Those lab values reflect acute rejection. The doctors were expecting her biopsy & ultra sound to show that the liver was dying, dead, blood clot, major leaks, something that would call for another trip to the OR. None of these have shown up. So, her studies today are reflecting mild rejection. (good news- I think) From the biopsy they look for something?? and then they have a rating scale from 0-10 to rate the rejection. 0 being no rejection and 10 being the highest level of rejection. Savannah is a 5. Again, the lab values reflect a 10. So they are stumped. They are searching and searching for the cause. The only thing that has been shown is that the blood flow coming out of her liver has slowed downed slightly. We ask the doc how bad and he said personall it was of no concern if so he would ber rushing her to the OR. He doesn't think that is the issue. We are starting Thymuglobulin tonight and you normally do a 5 day course. We don't know how long or short Savannah's will be. We are taking it a day at a time. We are praying that the Thymuglobulin will do the trick and her #'s will be turning around in the morning. Savannah is very weak. Her temp got up to 102.4 last night. The meds give her diarhea all thwe time. Loss of appetite and she is still very sore. Those of you that know Savannah know how many times she would stump her docs about the citrullinemia and I guess she has decided to play the same game with the tx docs! She is a fighter. She hasn't had her hair washed in 8 days now. I am going to force a wash tonight. Of course if she starts crying or anything I will back down but I amm going to give it my best shot!

EJ if you read this at school tomorrow I love you!

Will update again tomorrow. Please keep praying.

Love Renee'

Thursday, December 16, 2004 2:16 PM CST

Please pray for Savannah. 7 days post tx and she is rejecting. The ultra sound looks good. She is currently NPO and waiting for a liver biopsy in hopes of learning more. Please keep her in your prayers.

Tuesday, December 14, 2004 1:26 PM CST

The port is gone! The NG tube is gone! We have orders for Savannah to be a normal kid! She can do and eat whatever she wants! Last night her Grammy gave her a hollow chocolate Santa. She ultimately ate half of him and had chocolate all over her face. This is like having a 2 year old and teaching her how to eat! It is sooooo awesome. She reluctantly took all 11 meds by mouth today. I have never heard the sounds/screams that she makes during it. She will come up with every excuse to not have to take them. She needs to cough or she's trying to go to sleep, etc. But victory, yes sweet victory, will prevail for her!

The doc said today that we might get to go home in ONE WEEK! WOW (again) I just continue to be amazed at what God is doing for our family! Thank you again for the cards, phone calls and most importantly the prayers.

Stan and EJ headed home today. About an hour & a half after they left Stan calls me and says, "I go east right?" I gently reply, "No Honey. We live in Western North Carolina. Go West." So, yes he was headed to the coast!

Keep praying and I will keep everyone updated.

Love Renee'

Tuesday, December 14, 2004 9:48 AM CST

Just to let everyone know, Savannah had her port-a-cath taken out this morning. As I write this they are wheeling her back to her new room. We are hoping that today will be a good day and that the anesthia does not make her sick. They didn't put her under as deep this time, so that was good. She is beginning to use her muscle more. She still has not stood up yet, but maybe if today is a good day we can get her to walk around a bit. She took most of her meds lastnight. We forced most of them but she did really good. It is going to be hard on everyone of us to help her learn that she has to take them to make sure her new liver is happy and feels good. That is about all the new stuff that I can think of, so until next time keep her and all of us in your prayers. Aunt T

Monday, December 13, 2004 3:44 PM CST

What a GREAT day! Savannah's temp has been normal all night and today! Her levels are continuing to move in the right direction. She will be moving to the floor as soon as a room becomes availible. Her surgery was postponed until tomorrow morning around 7:30 am. She has pooped like 7 times since last night!! She is very alert and active today. Starting to boss us around like she use to do! Playing with toys, working puzzles, etc. The only bad thing about today was this morning. She has 5 meds that she has to take PO before the NG tube can come out. 2 pills & 3 liquids. I only had success this morning with 1 pill. She did great with it then held the 2nd one in her mouth to long and the bad taste got to her. So we get to try again tonight! Yeah...

Now the good stuff. She held a bacon cheeseburger with the works from Wendy's today! She was so excited and kept saying WOW! She more or less disected it but I thought that was great for her to get a good feel of all these new textures. We talked again about the new liver allowing her to eat anything she wanted and how we don't have to use the scales to weigh her food anymore. She just grins so big & says WOW YUMMY! She loves pickles. Oh my goodness does she ever! She ate some of the meat and cheese but not as thrilled like she was with the pickles. Before the transplant she could have lettuce and it was funny because that is what she picked off the burger! She loves to just hold it and say yummy. She had a spoonful of Peter Pan creamy peanut butter. She likes it!!! And of course the fries from Wendy's which by the way has the lowest of protein out of all the fast food chains. She had a couple of ounces of REAL milk flavored with strawberry nesquick. This has been so much fun! I know people think we are crazy filming our daughter eating pickles! So, no more vomiting. Yeah. Things are looking so great! Please pray that she will learn to take her meds and get to go to Ronnie's House soon! Love you all-

Renee' (BIG SMILES & HUGS)

Sunday, December 12, 2004 6:53 PM CST

Just a quick note before I go and crash! Savannah's temp has been up and down all day. 100.8 one hour and normal the next. Please pray for the infection or whatever is causing this to go away. Her lab values continue to fall!!! Thank You God!! The foreign object is the stent. It is still in the vein. Savannah sat up in a chair for about an hour and has used the bed potty 3 times so far! She is so miserable today. Since laying down from the chair she has finally resting peacefully. Since the tx she has not really slept. Just in & out dosing and not peacefully. Jerky, disturbed slepp. This evening she has slept like a baby should! Hopefully she will all night. She desperately needs it. Tomorrow will be the surgery to remove her port. I am going to speak wihth the anthistia people about being a little lighter so hopefully we won't be starting all over with the tummy issues. She also will be going to the regular floor tomorrow if nothing happens. EJ got to go to a Christmas party at Ronnie's house to day so that has helped with his boredom. He is doing great! Thanks to everyone and keep those prayers going! Love to all-

Renee'
PS I am going to try to post some pics of Vanna tomorrow!

Sunday, December 12, 2004 11:20 AM CST

SATURDAY 12/11/04
The NG tube came out this morning. Friday's ultra sound looked so great they aren't doing one today. For whatever reason, as soon as anything it's Savannah's tummy, it cimes right back up. Yes, the anithesia still could be the culprit but, it is literally as soon as 1-2 cc's hits it, up ot comes. So, more xrays and tests tring to figure out this problem. We have until 12:00 noon to get the anti rejection meds in via PO or in goes another NG tube. 2:00 pm another NG tube goes in. Still as soon as anything is put through the tube it comes back up. Considering putting in a DG tube (pass the tummy into the intestines). Trial and error all day long. Lots of vomitiing and dry heaving. Savannah has used what little energy had and is exhausted. 9:00 pm wwe try a supository even thought the xray didn't show anything. During the - TA-Da! We have poopy! Yeah, no more vomiting after that. She was blocked after all. 2 IV's came out today too!

SUNDAY 12/12/04 12:00 noon
Savannah is still so very tired. Minimal talking. Running a temp all night and morning. Everything has been sent for culture and I do mean everything. The neck IV came out a few minutes ago! The line was sent for culture. The Xray abdominal xray from yesterday showed a "foriegn object". Oh great, the best surgeon here left something in my Baby Girl? I doubt it. Wait, maybe it's the stent! Do more Xrays and see if she is passing the stent. (how do you spell that anyway?) Todays ultra sound is showing some fluid build up. Possibly the drainage tubes just need to be adjusted because the amount has stayed the same. One of the veins, I think they said the portal vein, (don't quote me) we got to see really good where they connected the old to the new. Where the connection has been made is showing sign of collapsing. It is very tight. Please pray that it will open back up. The surgeons possibly will have to put another sten in. We will see. Savannah will have surgery tomorrow (Monday) to have another of her past safety nets removed! No more port! Bye Bye for now. That will leave her with 1 IV! She is currently sitting up in a chair for the first time! She is so tired. I can't imagine going through what she has. She is amazing! Thanks to everyone and we love you all. Please keep praying for God to do glorious things with her!

Friday, December 10, 2004 6:36 PM CST

Savannah had a great night. She was kept sedated all night and the breathing tube came out this morning! She needed more blood during the night but nothing of concern. Her ammonia levels were bouncing around and finally leveled out this morning. The cocktail is gone! She woke up about 10 minuutes after stopping the sedation and the first words out of her mouth were, "I want Barney!" She loves Barney the dinosaur but the PICU doesn't have any of his videos so she is dealing with Elmo for right now. Of course I am sending someone or I will go and by her a couple of Barney videos today. Her #'s are slowly coming down. They have a great ways to go but the liver is working! Right now she is on heperin, asprin, and 4 anti rejection meds via IV, antifungal med, and several anitibiodics. I think it is a total of between 10-15 meds. After she said she wanted Barney she then wanted Sprite. She was gulping it and I knew she would throw it back up and she did. The NG tube will come out as soon as she can keep things on her stomach. I am terrible. Every cookie and chocholate thing I see I am hording for her!

UPDATE FOR THE DAY
What a wonderful day! Savannah is now 26 1/2 post op and doing fantastic! Only 21 1/2 hrs more before she is out of the "critical" time frame. Her metabolic doctor for the past 4 years, 3 1/2 months released her of his care today at 3:oo pm. WOW Her liver #'s are still coming down, only a slight temp of 100 this morning. As of 10 till 4:00 we were allowed to visit without having to wear our masks. Her antibiodics are built up now! When she first woke up this morning, before she spoke, she touched my face and pulled the mask off of me. She never liked it when I wore one. At home if I had to access her port I would wear one and it always scared her. I am so glad we don't have to wear them now. This afternoon she took her very 1st medicine ever by mouth! She wasn't to pleased with but she did it!! We gave her meds for her upset tummy and slowwy let her drink sips of water (even though she would go through a cup of ice chips in 2 hours) and she has kept it down. She doesn't want to cough now when she needs to beacuase of the pain but we keep encouraging her to and we use Pinky Bear on her tummy to apply pressure to help with the pain. Hopefully the dreesing will come off this evening to get some air. The only place that is seeping is where the G_tube USE TO BE (horray)!!! So we will put a 2x2 back on that one spot. She was brought her first "meal" this evening: ICE CREAM (OH MY GOSH!), CHICKEN BROTH & jello (protein free- big deal!). That is so exciting but, she won't eat any of it. She is so exhauted now that she just wants to be left alone. We all keep asking her questions and trying to do things for her but we are really getting on her nerves! The docs are doing report now with Dad in with her. Maybe she can rest! Her 2:00 labs looked good. Levels still coming down. I haven't heard from the ultra sound yet but if there had been a leak or something we would be back in surgery by now so no news is good news.

I have so much I want to put in this jornal for Savannah to read when she is older but I am so very tired and have had so many crazy emotions today that I think I am losing it! But one last story before I go for the night.

Here in the Children's Hospital there is a children's chapel. I went there in June when Savannah was in a coma. I prayed and left a prayer request in the book. I really enjoy reading the other prayer requests so that I know how to pray for others that are here and it helps keep things in perspective. (the feeling of I'm not alone) So this morning I needed to really get down and have a talk with God but didn't know where I could be alone and not interupted. Then I remembered the Chapel. So here I am talking out loud to God and spilling my heart out. Then I realized how special that room was to me. A private place for me & God. After I was through talking to God I went to the orayer request book and left my request. I then proceeded to read the previous request. Tiffany had already been there the day of surgery for Savannah! Thank you T. I kept reading and one dated November 11, 2004 had the name of the person to be prayed for at the top. Savannah. I thought how neat another little girl named Savannah. It was my Savannah. Someone here (I have a hunch) that works at the hospital put in a prayer request to the "liver giver" for Savannah's new liver. If that person reads this- Thank you from the bottom of my heart. That proves Savannah isn't just another patient to you and thank you!!!!!

When I read it I wrote beside of it that God had answered that prayer! It reminded of the love that God puts in His children's hearts for oneanother and of His promises to us. So again thank you for touching me in a way that could not have otherwise been reached.

Once again I am very tired and I hope I haven't rambled too much. I will update again tomorrow. OH wait. They want Savannah to "eat good" and take her medicine by mouth again tonight. If she keeps it down the NG tube comes out!!

OK LOVE YOU ALL & KEEP PRAYING!

Thursday, December 9, 2004 9:39 PM CST

It is almost 11:00pm and all is well. Savannah's last ammonia level was 32. If the one drawn at midnight is staying low then her last time needing and using her brain cell saving cocktail will be stopped. I am a little scared because for 4 years that has been what always brought her back to us. Her metabolic dr was laughing at me because the reality of her not having citrullinemia anymore has not sunk in yet. Savannah is so strong. When the sedation medicine starts to wear off she will open hers and look at us. She will bring her bandaged arms to her face. I know she is trying to get the tubes out of her mouth and nose. She has also tried to roll over once. The doc on tonight decided to pull the tubes out in the morning because he saw how frisky she is going be and there is really no hurry for them to come out. They will keep a continuous flow of sedation going until the morning and pull the tubes out at 8 am. I am thankful that she will be sleeping all night. Now I can sleep. I couldn't stand the thought of her rousing around and trying to wake up without me. Her numbers are still of but the liver working and the numbers are coming down. So far so good...... I am amazed at how little swelling she has. Just minor that you really have to look for aounr her peace sign incision. Her color looks great. She just looks awesome to have had a liver tx! Everyone who was in the ER with her kept saying they couldn't believe how well she did and cute she is. She has this old worn out, one armed (the other one chewed off by a dog which I promptly stiched up and stiched a banaid to), faded pitiful looking pink bear that was bought for her February 14, 2001, by her Grandma. Savannah hadf been airlifted to Chapeh Hill with an 800 ammonia klevel. Very scary. Anyway, "Pinky Bear" has once again caused quite acontroversy and is great for conversation. Everyone debates if he is a pig or a bear. It is too funny. Pinky got to stay with Savannah the whole time wearing his OR hat, Savannah's panties and her "gaurdian angel" taped to his right ankle. He is with her now and will be one of the first thing she looks for when she wakes up!

Thank you all for all the prayers. This is truely a work of God. Please pray for the donor family as they are grieving a great loss. I will update again tomorrow and please keep those prayers going! There is so uch more I want to say but I am exausted. So good night and again Thank You & Thank God!
Love you all-

Thursday, December 9, 2004 5:07 PM CST

WOW I am in Awe of our AWESOME God. A perfect full liver tx in only 5 hours. Minimal loss of blood, no blood needed, able to use all her bile ducts, nothing had to be manufactured from her intestines, ammonia level stayed stable, I could go on & on. The doc said the liver looked like it was her original one it fit so well!!! I want to climb to the very top of this hospital & sream that my God has performed a miricle. My daughter recieved her perfect liver. I am sooooo excited. I realize that the next 48 hours are critical but this stepping stone is behind us & I feel renewed strength to face whatever comes next!

The breathing tube will come out this evening and they are going to let her wake up tonight!!!!! Thank you all for your prayers & I will update again soon!

Thursday, December 9, 2004 2:36 PM CST

Savannah has her miricle liver half way hooked up now! It is 3:30 pm. Please pray for the donor parents. WOW they have donated the heart, lungs, liver, corneas, etc. What very special, generous people. Thank You God! So far no complications. Her pre ammonia was very elevated considering it was 50 yesterday morning when she was discharged from Asheville. Definately time for a new one! So they are taking some of the clamps off and hooking up the rest of the tiny vessels. (some are as small pencil leads) OK Love you guys!

Renee'

Sunday, December 5, 2004 8:39 PM CST

For Savannah update from 5 minutes before this one go to history at bottom of page.


Please everyone pray for Halley. She is on the waiting list for her new liver too and also has lupus (and several other things). halley is not doing well and needs our prayers for God's hand to be on her and pray fro her family. They have been through so much. Thank you.

Sunday, December 5, 2004 8:14 PM CST

It was inevitable. Savannah has walking pnuemonia. She is holding her own as always. She faces so much and always with such strength and a smile. I am still VERY weak. Unfortunately I still have to make the day trip to Chapel Hill tomorrow. The specialist EJ is seeing is very hard to get in with and it will be several months if I reschedule. I am a little fearful that my energy won't hold up. I almost asked Tiff (who is keeping Savannah at home) to pile in and go with me in case. I can't see doing that to Savannah with her being sick. The 5 hour trip one way is hard enough for her much less a round trip in one day. So I will be driving on my gardian angels wings COMPLETELY tomorrow! I know we are suppose to that all the time anyway but lets face it... not many of us do and I know I don't!

So far it is not looking good for me to be Savannah's donor. Her insurance company has put in place so many new rules that it is making it immpossible (so far) for me because of lack of insurance. Medicaid has denied me, insurance through Stan's work is $65 a week and then we don't even know if they would approve being a donor. Blah, blah, blah. I just remind myself that a whole liver is much better for Savannah than a partial one and God has the PERFECT one somewhere. I guess most parents who want the LRD is because so many children do and are dying waiting for their gift. I never realized what a HUGE shortage there is for organs. Savannah has been #1 in 5 states for 3 months and no liver. If she had full blown liver disease she would be dead by now. I thank God for protecting her until the time is right. He knows when, where, and how it will all happen. I am so glad. Charles Stanley had a message on patience this morning and it helped me put the whole waiting into perspective again. I do not want to get ahead of God in any way.

So pray for EJ & I to have a safe and productive trip tomorrow! Hopefully we won't "get the call" while I am down there and Savannah is home. That would be too funny. I can just see Stan, Tiff and the Grandmas trying to get Vanna ready and riding together to the hospital!!! What a mess!!!

Love you all-
Me

Wednesday, December 1, 2004 3:27 PM CST

I hope everyone had a wonderful Thanksgiving! I have had a cold/sinus problems for about 6 or 7 weeks now and my mom finally made me go to the doctor today. (I'm so stubborn!) I have pneumonia. Yeah....

Savannah has had a great 2 days in a row. She has really been feeling the best she has in several months. I hope I haven't just jinxed her. We put our tree up Sunday and decorated it Monday night. Savannah spent the whole evening until bedtime taking the ornaments off and putting them in a green gift bag and then redecorating the tree again. She would do this over and over! It was so sweet.

So, EJ & I head for Chapel Hill MOnday. We will leave about 7 in the morning and be back that night. I am not looking forward to this "day trip" and neither is my back but, there is no way I can spend the night down there without Savannah. Just as soon as I do we will get the call. Nope - Not gonna risk it.

Hope everyone is well and will update again soon.
Love Me

Saturday, November 27, 2004 6:37 AM CST

Sorry it has taken me so long to update. Savannah has been in the hospital again. I really don’t know what to say. I sound like a broken record. Portia, our potential LRD, has extra blood vessels coming from her liver that Savannah doesn’t have. So, Portia is not able to donate. I was so disappointed but on the other hand OK with it. With all the brick walls we keep coming up against I continue to feel God’s peace and comfort. I know the perfect liver is coming soon. We are in the financial process of having my work up done to be the donor. I was praying a few nights ago and God reassured me that it will happen soon and I really do not think the liver will come from me. I can’t help but try to be the donor but I don’t believe that is God’s plan.

EJ had his sleep study done with inconclusive results. This doc wants to take him off one of his meds or put him on one to sleep or put him on another to keep him awake or send him to Duke... jeez. We go back in 2 weeks after he consults the neurologist & physcologist.

I hope everyone had a wonderful thanksgiving! And by the way, I found Savannah her Dora tent at Penney’s on clearance for $12!! I love you all.

Me

Tuesday, November 16, 2004 1:59 PM CST

I want to start with all the good things that happened lately. The bad seem so overwhelming that I get lost in them and forget the good.

A week ago this past Sunday, Savannah made her first recognition of God! I was going over her Sunday school paper with her that had a picture of Abraham kneeling and praying for her to color. I asked her who the man was. She couldn't tell me but agreed that it was Abraham. I believe her speech delay kept her from saying his name. I then asked her what was he doing. She replied, "Praying." I smiled, said yes and ask her who was Abraham praying to. She instantly replied, "God." I was so thrilled! I want her to know & love God more than anything. I look at her and see Him in every aspect.... She will also inform you that Christmas is Baby Jesus' birthday. And of course, she wants Baby Jesus to have a party with a cake & balloons! She also knows that Mary is Baby Jesus' momma's name. I never thought that watching her learn of God would thrill my soul so much!

Her speech has improved greatly. She still has a hard time with it but does her best. She has always called my sis, whose name is Tiffany, "T" until a few weeks ago. She can now say a 3 syllable word. No F's but something like Ti-a-ny! She can finally say her own name- or at least a nick name. She says I'm Banna. She's really not quit sure if she is or not but that is what she says!

She is very excited about Santa Claus. We haven't really taught her about him but that's just something kids learn from all the commercialization of Christmas. I have never taken her to the mall to see Santa because of germs. Well, we were walking through Target one day and she sees all the Christmas trees. She runs to them with excitement yelling, "Chrima tree, Chrima tree!" She then proceeds to go up & down the Christmas aisles looking for Santa. She was so funny. "I tryin to ind Santa Cause, Momma." I find a picture of him on a gift bag and appease her with that. Last week my mom had to go to the mall so I decided to take Savannah to see Santa Clause for her first time ever. She was so excited & the innocens of it flowed over into me. She wasn't interested in seeing him to make sure he knew what she wanted but she wanted to see this magical person she had only heard so much about. She got right up in his lap and talked to him & Mrs. Claus. Sanata asked her to leave him some cookies because he gets pretty hungry. Then he asked if she knew what Rudolph liked to eat. She had no clue who that was so we showed her the fake reindeer there and told her all about the glowing red nose. Anyway, Santa asked her to please leave Rudolph some carrots because if she doesn't he will eat all of Santa's cookies! She thought this was funny and now tells everyone that she is going to eat all the cookies. What a mess. She can't even eat them because of the protein! Mrs. & Mrs. Sanata said they would pray for Savannah & her a new liver. And by the way, she wants a Dora tent. I can't find one anywhere under $30! She loves to do puzzles and has progressed to 24 pieces now!

EJ & I started our volunteering at a local theraputic horseback riding stable and we are both loving it!

Make a wish visited with us and Savannah's wish is to go to Dora's house. She was very insistant. The people who were here said they have never seen a 4 year old who KNEW without a doubt what their wish was the way Savannah did. They even tried talking her into being a princess in a castle or riding in the Disney World Pararde. Nope, she wanted to go to Dora's house. So, we will be planning trip to Disney World in Orlando AFTER the transplant. We will be staying at Give Kids The World and it is specifically for wish kids. They are very taylored to kids including an all you can eat anytime of day ice cream parlor! So I want Savannah to have had time to adjust to eating so she can have a wonderful start to her new life.

Ok Long Story Short:
6 high ammonia levels in past 4 weeks. Yesterday 209, today sleeping all day. Last months amino acid panel never got run???? It somehow magically disappeared????? (way to go CH) Not eating hardly any by mouth. The usual...

EJ will be doing his sleep study next week with not much hope of having conclusive answers (according to the doc) which means we will end up at Duke.

I get so excited sometimes when I think about our new life. WOW! I can't put it into words! Things that have become "normal and a way of life" will no longer be! Tiffany bought cookie cutters today at the store so we can make cookies for her. A girl she works with sent Savannah a chocalate & caramel candy bar to keep in the freezer until after her transplant when she can eat it. No more bad BO from the ammonia and meds, No more brittle, breaking, falling out hair. No more tube feeding(eventually), no more weighing food, meds, etc. How bad will I panic when she eats her first hot dog? Will all the protein numbers 7 weights I have memorized ever go away? I will force them to. I will supress them so deep that they can never ever be brought out again. lol I was looking through some yummy recipes today and most of them I won't fix becasue I can't modify it for Savannah to have. Soon, I won't have to and she can even lick the bowl!!!

Well, take time to lick the bowl and savor the previledge. Love you all!

Me

Sunday, November 7, 2004 7:24 PM CST

It's Sunday night and I am watching Extreme Home Makeover. The family is awesome! A mother and father who are deaf, youngest son Lance is blind & autistic, and a healthy 14 year old son Stephen who is the "life line" of the family. Once again I am reminded that things could be worse. The mom says that she had 2 choices when Lance was born. Go to the sad side or go to the happy side. She said she choice the happy side an that is what they are, a happy, happy, happy family! Wow what strength and grace. It is so easy for me to wallow in self pity, but that is sooo selfish! I am ashamed. I forget that it is the big things that don't matter and the smallest is the most precious.

Please pray for Portia this week. She has her first LRD test Wednesday night and will finish Thursday evening. She emailed me and said her and hubby Richard are looking so forward to having 2 days to just themselves and ... the hospital! Pray for a safe trip and God's will to be done. I just keep thinking that the doctors biggest concern with a cadaveric adult split liver is the size. Not necessarily the liver itself but the vessels & bile ducts. They will be adult size and you have to connect them to a year old. Well, Portia os very small. I don't think she is even 4" 10" and definatley does not have a weight problem. I just keep thinking her liver, vessels, bile ducts are going to fit perfectly. I know a cadaveric may come. It should have, according to statistics, already. But it hasn't. It will not surprise me one bit if a cadaveric never comes & Portia is the God given donor to my precious baby girl.

I Love you all. Good night and God Bless.

Wednesday, October 27, 2004 9:38 PM CDT

The following post I had started the day before we got the false call, so here it goes.

I have been waiting to exhale... & I think I finally can! Savannah has been on steroids since Monday without the first complication! She has been so much fun!! They really make her hyper and she is talking non-stop and doing the silliest things! Over this past weekend her speech even improved some. Whenever she is sick it holds her back so much but her little body just keeps going. She is such a determined little lady! We have had cabin fever so bad. The weather has been cold so I wouldn’t take her out except for doctor appts. Today, Wednesday the 27th, she is doing really well. I can tell she is getting a consistant load of protein becuase it drags her down. I can almost gaurantee that after the transplant it will be like she is on steroids 24/7. I know that energetic gurl is in there some where. This past Sunday I took her & EJ to Sunday Schiool for the 1st time in a long time. They both loved it! Savannah’s class sung for the congrgation that day and she went on stage all by herself and sung with the other kids. It was the classes age 12 & under and she was the only one with the guts (or is it love for music) in her age group to go on the stage! I tried to go with her but she said, “No Mommy. I can do it.” And so she did!

We have a new addition to the family, Princess. Princess was the only girl in a litter of kittens needing a home so she is ours now! Savannah loves her - too much sometimes. I have to constantly remind her not to squeeze to hard! She has been a good distraction for us.

So things are calm for the moment. We spent our morning baking a pumpkin cake, crying because of joy that we were getting a new liver and then wanting to cry because it wasn’t the one. Then wanting to cry for the family who had just lost their child and was so unselfish that they have gave life to others despite their grief. When we got the call Linda (our respite nurse) had just walked in the door. We immediately prayed and then I told Savannah we were going to get ready to go to Ronald’s house & the hospital to get her new liver. She got a huge grin on her face, giggled and eagerly said “ok!”. When I told her the liver wasn’t a good one that we had to wait until the docs found her a good one her face sunk a little and she slowly but willingly said a drawn out, “OoooKkkkk.”. It was kind of crazy anyway. The one day that Stan is out of town for work, we get the call. He wouldn’t answer his cell & I had to get his boss to track him down. He said he saw I called but figured naa, it couldn’t be so he didn’t bother with it. Just goes to show how quick things can change...

EJ got his report card and is making 3 D’s. He has lost his Xbox & all video games (computer, etc) until his mid term report in 6 weeks and then only gets it back if his grades are above a C. He isn’t happy but I know he can do it. He goes to Chapel Hill in December for the endocrinologist & has the sleep study consult in a couple of weeks. He is now off the topomax and last week his doc upped his antidepressant. His (all of us) home life is so not normal but then again who’s is?

We had family pictures made last weekend and I have a lot of new ones to put on the site so look for those soon. Hugs & Smiles to everyone...

Me

Wednesday, October 27, 2004 2:10 PM CDT

At 11:00 am this morning WE GOT THE CALL! A little later we got another call- Sorry, we have to cancel. The donor liver was not usable......

Friday, October 15, 2004 11:26 am EST

We have had a rough couple of weeks. September 27th Savannah started with a runny nose- just allergies and then proceeded to aggrevate her asthma to the point of not being able to sleep from coughing and vomiting. We visited the asthma doctor Friday the 1st. He wanted to do a run of steroids which would knock this out of her but she would have to spend the 5 days in the hospital because steroids counteract with phenylbutyrate and can prohibit the breakdown of protein. So they doubled her inhaler and said to continue with her nebulizer as needed. Then Tuesday the 5th we headed down to Chapel Hill for a routine visit. Wednesday before we left her ammonia was 301. Liver tests were basically normal and as of today I am still waiting for the amino acid results. I called Tuesday (they were ran Monday evening) and left a message but no return calls yet. Last Friday ammonia was 163, spent the weekend on sick day diet and she was on the road to recovery. Monday she started running a low grade temp, Monday night no sleep again.
Tuesday was a special day despite the sickness. Portia, our possible LRD is a teacher a a local privat Christian school. She had told her all girl Bible class about Savannah and they wanted to meet her. Went got to spend 35 minutes with the most precious girls. When we first went in they started singing Jesus Loves Me and then proceeded to sing Savannah's favorite If You're Happy & You Know It! Savannah wasn't feeling well and she is shy anyway so she didn't know what in this world was going on! All the girls got to ask me questions for about 10 minutes and they had some great questions. They wanted to know alot about Savannah's big brother too! They gave Savannah presents that consited of home made cards to beanies to umbrellas! We ended in prayer. To hear the faith of these young girls through their prayers was awesome! I pray that Savannah's story will some how stay with them and help keep their faith strong. They want us to come back after the transplant! I can't wait to see them again. It was kind of pitiful though. Savannah was exhausted by the time we left. She felt so bad.

Wednesday morning we went to early morning sick clinic, doc there tripled her inhaler, gave me the prescription for the steroids (just in case) and sent her for a chest xray. It was normal. We went and had an ammonia level checked and while there saw some friends I hadn't seen in a few months and found out her daughter was diagnosed with cancer a few months ago. (things could be worse for us) Savbannah's ammonia was 116 so she was still holding her own. Thursday no temp and very active! Thursday night more coughing and vomiting and some bossyness coming through. Her she is hanging over the tub vomiting like crazy and in between vomits fusses at me to clean the bath tub! She was so funny. I was trying to hold her hair back and then clean her up and she is worried about the vomit in the tub. So far today she is playing well, crying because she can;t go outside to play- not pitching or fit or angry crying, sad crying, she LOVES being outside.

So that's how our life has been. The usual I guess. Pray that she will get well soon & stay well. If we were to get the call today I would have to turn it down because of the sickness. That would be a shame. Love to all of you!

Tuesday, September 28, 2004 2:39 PM CDT

This is unreal!! One of Savannah's medicine is very rare & VERY expensive. When we first brought her home after she was born that was my most difficult task (except for teaching all the local docs) to find a pharmacy that would even consider ordering and keeping on hand. Our local hospitals wouldn't even chance it for Savannah. I finally found a wonderful pharmacy that was willing to take the risk of ordering sodium phenylbutyrate, which now costs $1900 for a 21 day supply. Without this medicine Savannah WILL die. So you can see how it could have been so tormenting to get this med. Well, I have known since about 2 weeks ago that our pharmacy didn't have the back up med & was still waiting on it to come in. It was on back order. Today it is still on backorder. The pharmacy called me back anout 1/2 hour ago and quote, "No body has it." Meaning nobody in the US has it to send to us, give to us or even let us borrow it. They are not sure why it is on back order unless one of the few companies has quit making it because of the expense or low demand. We do not know when it will be here.

So long story short, Savannah will be starting on sodim phenylbutyrate that we got straight from Muenzers lab. The downfall is this is from a stock of "trial" med. Meaning this is what they used to experiment with before it was FDA approved. The texture is different and the potency of it will probably be off. It even weighs more that her usual med. So we are going to be tweaking (hopefully not to much) the next few days. Our only other alternative is to be admitted to the hospital and have the sodium benzoate & sodium phenylacetate by IV. If I can keep her at home I will.

She has had a rough past few days. Her asthma is terrible. She is coughing till she vomits, up all hours of the night. Won't eat hardly anything. She has an eye appt. Friday and an asthma appt. Thursday and we have to be in Chapel Hill next Wednesday. Phew, I'm tired already!

EJ is doing well. I have my 1st meeting at the school tonight to discuss the trip he will be taking with his class mates to Washington.

My brother has survived yet another Florida hurricane without major damage and keeping his life. Thank you Lord!

As far as the LRD tx goes, we are having to start all over and get the financial end approved... again. So, it will be a few weeks before we make any real progress with testing.

Hugs & yes, Smiles...

Saturday, September 25, 2004 6:28 AM CDT

I finally got a response from Chapel Hill. They are doing 2 things. First they are uping theweight range that they will accept a cadaveric liver to 70 kg which is a little over 150 lbs. This means they will accept a liver from an adult who passes away that weighs 150 #'s or less and do a split liver transplant.

The second thing is they are allowing us to proceed with a LRD. This can take several weeks.

Savannah's ammonia was normal Thursday! I will find out he amino acid results next week. She is feeling better but refuses to eat. She will actually run from me when I mention food. So I am doing alot of tube feeding these days.

Please pray for EJ. He had his yearly physical last week and wouldn't you know, we now have new health issues to deal with. We had several tests done this week and will know results next week. We may end up going to an out of town specialist. He has 4 more weeks before he will be completely off the topamax and then we will do the sleep study in November.

I know God's timing is perfect and He is in control of everything. I also know He won't put more on us than we can bare. I am really having to seek Him through all this and stay close to Him because it is so easy to get blinded and feel like He has forgotten us. But when I slow down and concentrate on His love for me I can actually fell Him carrying me through this. Thank you Lord!

Monday, September 20, 2004 7:42 PM CDT

Savannah is home!! She has had a fairly good day. Just dealing with the "hangover" issues. Talked with Chapel Hill about whats going on with her and there are some control issues we are working on. With citrullinemia it is like walking a tight rope and when Vanna falls off the rope it can be difficult to get her back on. Also, she is maxing out her meds which is putting her at higher risk for liver damage. I will be doing a new diet tomorrow & Wednesday then checking ammonia & doing an amino acid panel to see how she is doing. Obviously is she isn't tolerating the changes her ammonia will be on the rise again shortly.

Great News! Vanna's transplant coordinator agreed with me on going through with a Living Related Donor (LRD). For those of you new to the site a living related donor is not necessarily someone related to Savannah but someone who is alive, knows her, blood match and correct size liver. This donor will give a portion of their live to Savannah. You only need about 10% of your liver and within 3 or 6 months (I can't remember right now) it will regenerate itself to full size! Pat our coordinator will present this option and ask for permission to follow through to the board tomorrow. I will have an answer no later than Wednesday! If we do proceed Savannah will still stay on the waiting list and if a cadaveric donor comes before we can complete the LRD we will go the route of cadaveric. So, which ever one comes first.

Thank you all for praying & please continue to do so.

Monday, September 20, 2004 8:58 AM CDT

Just wanted to let everyone know that Savannah ammonia has finally settled back down. Yesterday it went down and then shot back up to 360. She slept most of the day until the evening and then ate pop corn and drunk 18 oz of kool aid!! Her ammonia was 44 this morning and she is walking on her own (minor stumbles)! Hopefully she will be coming home this afternoon!

Please continue for God's guidance. I am going to push for Chapel Hill to start the LRD. I am contacting them today.

Hugs & Smiles!

Renee'

Sunday, September 19, 2004 11:14 AM CDT

Here we go again. Savannah was admitted Saturday. Ammonia peaked at 355 so far. She had a hard night. Hopefully we will come home soon. I will be calling Chapel Hill Monday and pushing for the LRD.

Wednesday, September 15, 2004 8:33 AM CDT

Savannah's ammonia has once again returned to normal! She is back on her regular diet today with a .5g increase in one med. Hopefully this will be enough to counteract the 10% increase in protein. We have run into another puzzle. Savannah is getting way high amounts of arginie and we don't know why she is needing this much. Too much argine is NOT good for you. So we are now working on that.

Still waiting.....
Still praying.....

Monday, September 13, 2004 3:51 PM CDT

If I were still blogging this post would go there. I need to vent so I guess the caringbridge site will do. Maybe some mom who feels the same way will come along and feel better knowing she's not alone.

I have a pit in the bottom of my stomach. My abdomen is so tight. Sometimes I catch myself not breathing... literally and I have to take a deep breath to bring myself back. She's been asleep for 2 hours now. Slept 12 hours last night, up for 2, down for 1, up for 3, down again for 2 so far. Typical 359 ammonia level symtoms. She's not projectile vomiting. She's OK. Check her respirations, yep elevated but again typical. Still no vomiting. Ooooh, she is making her moaning sounds while sleeping. I no your hurting baby. Mommy's here. I'm doing all I can. I feel so helpless. Oh no, I just remembered, no vomiting prior to coma in June. Can't rely on that anymore. I know, check your reflexes. That will let me know if she's gone to far. Moaning, just more moaning. Phone calls back & forth. Try this, try that, check the arginine, up the sodium, quadruple her calories, she hasn't moved in an hour and a half. Stop it Renee'. SHE'S OK. Or IS SHE????

This is how I live. Right or wrong... This is living with citrullinemia. Being on the outside looking in I guess a lot of people think that I am overreacting, can't handle much, am weak or don't trust the Lord enough. Well, I tell ya, when you have walked a mile in my shoes.. then tell me I'm weak.

Baby girl, I know one day you will read all this and I want you tp no that I Love You so much and wouldn't trade anything in this world for all the worries. They are soooo worth it just having you here with me!

Monday, September 13, 2004 3:07 PM CDT

My prediction has come full circle:
Last Friday was Savannah's 1st day with her 10% protein increase. I ask the doc to up her meds. No obvious reason to... OK So I tell everyone, watch next week her ammonia will be up & I weill be calling asking them to please increase her meds...

Today Savannah's amnmonia is 359. 1 med has been increased by .5g and we will do sick diet for 24 hours. Repeat labs tomorrow afternoon unles she gets worse then admission to hospital.

I did have the opportunity to as her metabolic doc what happens if we get the calll while her ammonia is up? Will/can they transplant. He didn't have a clear answer because the disorder Savannah has (citruillinemia) is so rare that he hasn't had or heard of any experieces with it. H said his colleague will be calling some specialists to see what they can find out. His first immpression was if we get the call to get to the tx hospital ASAP and start Savannah on IV meds to get the ammonia down and stop them at some point before or during the tx. That sounds logical to me because the new liver will cure her from her high ammonia episodes but will it take her longer to recover? I know after we get her ammonia back under control it takes her a couple of days to be back to her "normal" self. Oh well. We shall see.

Friday, September 3, 2004 8:15 PM CDT

Prayer works wonders!! Savvanh's ammonia is 60!! She is doing great today! I took her and EJ to TCBY this evening during our normal dinner time. It was so fun ruining our dinner!!! Savannah had never been but I remembered today that they had something protein free she could have. So I looked it up and sure enough she can have the shorbet, any flavor. Today TCBY had juicy orange and they swirled it in a cup like ice cream. I told her it was orange ice cream and she was sooo excited! She LOVED it! I tasted it and they are very good. Only problem is they are VERY sweet and she was so hyper she couldn't control herself for about 15 minutes after eating it. She is so funny. Tonight I will start her regular diet with full protein load again. By Tuesday or Wednesday we should have the amino acid results back and can then make any neccesary changes. In 2 months she has gained 2 lbs! She weighs 43.5 lbs now!! That is great especially considering she is getting ready for the tx. Well, she is starting to cry now and wants her "milk". Thanks for continuing to lift her up in prayer! Hugs & Love

Thursday, September 2, 2004 3:07 PM CDT

Well, here we go again! this afternoon Savannah's ammonia is 293. I am waiting on Chapel Hill to call me and hopefully I can treat this very aggressively at home without her being admitted to the hospital. We will see. I will be so glad when we get the call and can start worrying about "new" things other than brain damage. Keep us in your prayers...

Tuesday, August 31, 2004 8:18 AM CDT

Saturday was a huge milestone in Savannah's life. She turned 4!! That was the last protein free birthday for her! Now I am waiting for her new birthday with the most precious gift. The gift of life!

The past 3 days she has been having diarhea. Yesterday i thought I was going to end up taking her in but after getting about 12 ounces of soda in her in about 10 minutes she perked up. It is crazy to think that I feed tube my child soda or something full of sugar... Calories have always been a great help with fighting ammonia levels. I firmly believe that in June if we hadn't been on the road so long and I could have tubed her more calories she wouldn't have ended up in a coma. Oh, well.

Saturday when I was tubing her she said to me, "I'm done with my button and get my new wiver and I'm done with my port!" She is so excited about getting her new liver and eventually having the port & button removed. I will miss the button. It has saved us from many hospitalizations. It is security for me.

Please continue to pray for Savannah and the donors family.

Thursday, August 26, 2004 6:38 AM CDT

I first want to say Thank You to everyone from C.L.A.S.S. Kids for the most comforting welcome! Several of you have emailed me personally offering support & that means so much to me! Thank You.

The waiting is awful! I'm not jumping as bad now when the phone rings and am relaxing some. I keep thinking about the family of the donor... I am praying for them. I have lost chilrdren, grandparents etc & know the grief.

As if I don't have enough on my plate, EJ took a nap when he came home from school yesterday and had a seizure. It was a pretty intense one. Scared me. I haven't told him. Sometimes I tell him when he has one & sometimes I don't. I have to call his neurologist today about it.

Stan has amazed me thorugh this. He is keeping himself well under control & talking to me about it. A lot of times he won't discuss anything medically about Savannah and before she was listed he didn't want to even think about the tx. Thank you for your prayers. Please continue to pray for EJ, Savannah, Stan, mother-in-law, my mo & myself that we will all be safe when we get the call and head down the road. Thank you to everyone for all your support!

Monday, August 23, 2004 5:41 AM CDT

It's the 23rd. Listing day! I have been a mess! I am having to pack for 3 people ans of course Savannah is the hardest. I still have to take all her citrullinemia stuff with us "just in case" but I can't pack all that until we leave. I have toi have it for daily use. I hope I remember everything. I will be gone a month or so. Last night I started having my first doubts. Are we doing the right thing???? Stan was very comforting and reminded of why we are doing it and showed me that I once again had took everything out of God's hands and I am not able to carry this burden. So this morning I am still nervous and it is so hard to pray... Help me pray for myself. I am reminding of the song I sing in church Wall Of Prayer. That is what I need. I am afraid that I am not going to be strong enough to see Savannah after the surgery. It is so hard seeing your child lifeless with so many tubes, bags, monitors, etc hooked up to them. Down deep somewhere I know I will be OK. God hasn't carried me this far to drop me now.

How have we been spending our days? We have a new routine that started several months ago. Every evening or when Savannah can convince someone, we go see the cows. A little ways down our road is a huge rolling feild for cows that belong to our neighbor. So we ride down to see if we can see them. A lot of times we don't be cause they are behind the hills or wherever they go. About a month ago my hubby had a great idea. Take the apples off his mom's apple trees to feed the to the cows.(the apples didn't get spayed this year) Great idea! So now, after many days of training, these regular ole' black cows, will come running to us when they see the truck pull up & we get out with our baskets. The one young bull immediately took up with EJ and now we can all hand feed him. A few of the momma cows will let us to. Savannah will squel with delight when she feels that rough sloppy toung on her. She is so funny. I think yesterday was the first day she actually held on to the apple and didn't drop it when the cow tried to take it. Yes they are regular old cows but at this point in our life we need those cows. It is a family affair. Stan drives the truck and Savannah & EJ ride in the back. It makes us stop for a few minutes and focus on God's beauty. Yes these cows are beautiful in the sense that they trust us & enjoy us. They look for us and expect us. And they are, regular ole' cows.