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Monday, November 2, 2009 6:07 PM CST Well we had a wonderful spooktacular Halloween! Poor little Bryson was sick so we didnt get to spend time with him. We went to Sulphar Springs and spent the evening with Destiny's nurse, Paula and her family and more friends. We had a blast and everyone loved our costumes! I, being nicknamed, Cruella by our coordinator in Pittsburgh, (thank you, Alice)thought it was a must to be Cruella DeVil for Halloween and Destiny a precious little Dalmation. We got loads of compliments.
Health wise doing wonderful... Thank you Lord!!! She's on homebound still til around spring break when all this flu finally leaves the area!
Thanks to all that continue to check on us and prayers are always appreciated very much:-)
Tuesday, October 20, 2009 9:03 AM CDT Sorry for the lack of updates lately. Destiny is doing wonderful! We have had no problems since returning home from Pittsburgh. Thank You Jesus!!! UTI finally gone, blood pressures have been so awesome we barely do blood pressure meds anymore. She did start 2nd grade but is now on homebound due to flu season hitting so hard and so fast around here. Which is sad because she was soooo loving school but she can return after flu season is over. This H1N1 flu mess is sooo scary. I just pray none of us have to experience it first hand. We have been taking lots of precautions. And hope you all are as well!
We have our costumes for Halloween. Im going to be Cruella De Vil and Destiny is going to be a Dalmation puppy!! Gonna be too cute. Bryson has decided on Wolverine, he didnt want to be a puppy too. LOL He is doing wonderful and doing good in Kindagarten other than getting into trouble almost daily. LOL ALL BOY!!! Well I guess thats about it for now. Not alot to update, will put new pictures on here after Halloween.
Thanks for your continued support and prayers.
C~
Saturday, August 22, 2009 9:47 AM CDT We have made it back from Pittsburgh! There's no place like HOME!!! We had a very busy trip with lots of appointments and even a few inpatient for yet another UTI. She is doing fine now, on antibiotics again. I pray this time it will take care of that nasty little bug. Her ultrasounds show hydronephrosis in both native kidneys and ctscan showed some inflamation in them as well. Her grafted kidney looks great. Her blood pressures have been much better now. Some med changes for growth and improvments. SO.... The trip was good. The docs and nurses there were very impressed with her growth and maturity. She talked everybody's ears off.
We got to see some of our friends from long ago which was sooooo awesome to see how all these kids have grown over the years! We are so blessed to have such wonderful people in our lives. We love you all!
Monday, July 13, 2009 11:58 AM CDT We had quite the adventure or "babenture" as Bryson calls it! LOL
It was sooo hot in Florida, on our first day out at Animal Kingdom we had an incident with Destiny's ostomy bag coming off and that lead to an accident where her central line got caught in the stroller and snapped into. We called 911 and was taken by ambulance to Arnold Palmer Childrens Hospital in Orlando. They were awesome there we got it repaired and out of there in a matter of a couple hours! But with that kind of excitement we decided to call it a day and go back to Give Kids the World. She was completely fine so we toured the village. It is such a wonderful place. Like living in Candy Land for a week!
We seen Magic Kingdom, Seaworld, & Universal Studios over the rest of our stay down there. We also spent a whole day playing extras in a movie that will be coming out in the Spring in theaters. Its called "Letters to God" so be looking for us in there!! Gonna be a tearjerker for sure!
Then our trip back turned into a nightmare! We left Kissimmee, Fl. got 30-45 mins into our long drive back and had a blowout on our rental. That set us way back on time and we ended up having to exchange vehicles in Leesburgh,Fl. We made it to our half way mark in Mobile,Al. at like 3am. When Destiny woke me up around 530am crying with her side and hips hurting. Intially I thought it was just from sitting in the car for so long but she got worse and worse then spiked a fever. So off we go to the E.R. at University of South Alabama childrens & womens hospital. Where she was admitted and immediately put on antibiotics for massive amounts of white cells in her urine. We planned to be transported our of there to our hospital in Dallas asap so Kathy and Bryson left for home. " The Babentures never end" LOL This was sat. early mon. morning Children's of Dallas transport team came to get us and flew us back to Tx! We were discharged on weds7-1 on antibiotics for a U.T.I. she did great until we stopped antibiotics on weds.7-8 then again sat. very early she woke me with the pain again No fever at that point but the pain wouldnt go away then by noon she had a fever again so here we go back to Dallas. Confirmed U.T.I. again and on antibiotics again. She is having high blood pressures but for the most part she is feeling fine but the dr.s are being more agressive this time. We have done an ultrasound of her kidneys, about to do an ileoscopy, and talking about another test on the kidneys. Something is causing the high blood pressure all of a sudden.
I will do my best to update again soon to let you all know how this turns out. We are scheduled to go to Pittsburgh Aug.9 for her annual and maybe transplant camp. Just pray we dont end up there before we are scheduled!
Thanks for your continued support and prayers.
Christie and Destiny
Saturday, June 6, 2009 8:52 AM CDT Well it has been a while but all is going well. Destiny has completed the first grade and is soooo excited that the summer is here.She recieved academic achievment in Math!!! I'm so proud of her. She is still behind the other kids abit but made remarkable improvement after actually getting to the school house.
We are getting ready for our Make A Wish trip to Disney World. Its coming up fast! And we are TOO excited about that!!! Our little friend Alyssa is going to be there at Give Kids the World at the same time we are, so that is going to be too cool.
Hope everyone has a blessed summer with lots of fun and adventures. Thanks for all your continued support!
Sunday, April 19, 2009 10:36 PM CDT Wow this is the first time I've tried to update since the changes on caringbridge...Took me a minute to get here...LOL
Well Destiny is doing wonderful. She's going to school alot easier now, actually looking forward to it each day so that is great. She had her eyes checked last week and we found out she has a stigmatism and near sighted so she will be getting her new glasses in the near future. She looks absolutely adorable in the ones we picked out!
We are getting so excited about the summer coming though! June 20-26 we will be at Disney World in Florida for her Make-A-Wish, In July (hopefully) Zach and I are taking a little vacation to Vegas together!!! Then in Aug we will be in Pittsburgh for Destiny's annual visit and maybe transplant camp!! We just pray we stay well and get to enjoy all these wonderful adventures.
Wishing all our friends a happy healthy spring and summer fun!
Love
C,D,&B
Wednesday, March 25, 2009 10:19 PM CDT Quick update.... Monday march 23,2009 Destiny went to school for the first time... She was sooooo excited and happy about this. It went good the first day but the second day she decided she couldn't sit still and kept getting out of her desk to go over to her home health nurse, whom is attending school with her and wanting to eat every 10 mins...LOL Thats going to be a hard thing for her to get used to. So needless to say day 2 was stressful for them both!
Then this morning around 5am she wakes me with alot of coughing then vomitting and a fever. That only got worse as the morning unfolded. So we are now in Children's Hosp. in Dallas where we have done a full workup and doing the whole wait and see what the next 48 hours shows on cultures and all. I believe it to be only respitory but you never know, these transplant kids can suprise you at any given moment! You learn to always be prepared and never take a day for granted!
We greatly appreciate all of your support and prayers. Hope to update soon that we are back home and getting in the groove of things with school.
Christie and Destiny
March 27,2009
We are still inpatient... So far cultures are negative but she tested postitive for the flu and she has a slight ear infection. She seems to be about 85 etter because she is trying to drive me nuts in here!! She's on full isolation so she is unable to leave her room and been hooked up to fluids and antibiotics all day so needless to say she is getting very restless and tired of sitting in her bed! The plan is to be discharged tomorrow on antibiotics as long as everything else stays negative. I will update again soon. God bless!
Thursday, March 12, 2009 7:46 PM CDT This is an interview one of my friends had for her daughter. I thought it would be interesting to see what Destiny's answers would be. This is too cute! And her exact words!!!
1.
What is something mom always says to you? "I love you"
2.
What makes mom happy? "me being good"
3.
What makes mom sad? "me getting in trouble"
4.
How does your mom make you laugh? "by being funny"
5.
What was your mom like as a child? "bad"
6.
How old is your mom? "like 30"
7.
How tall is your mom? "8 ft. tall"
8.
What is her favorite thing to do? "play games and do puzzles"
9.
What does your mom do when you're not around? "go crazy"
10.
If your mom becomes famous, what will it be for? "singing"
11.
What is your mom really good at? "doing my meds"
12.
What is your mom not very good at? "not smoking"
13.
What does your mom do for her job? "works at taco casa"
14.
What's your moms favorite food? "steaks and meat"
15.
What makes you proud of your mom? "because i love her"
16.
If your mom were a cartoon character, who would she be? "D.W."
17.
What do you and your mom do together? "puzzles and shop for groceries"
18.
How are you and your mom the same? "same color, same hair, we are 2 like a kind"
19.
How are you and your mom different? "she dont like monopoly"
20.
How do you know your mom loves you? "because she says i love you all the time"
21.
Where is your mom's favorite place to go? "the bar or somewhere out with her boyfriend"
Sunday, February 15, 2009 10:33 PM CST We are doing just wonderful! Destiny had a great visit with her Daddy yesterday. And got to meet his wife and her 2 little sisters. Alexis 3 & Jessie 7mths. Funny she is the oldest out of 4!! Seems weird!! But she really fell in love with her Dad. They just played and played. Kids can be so forgiving. Its bee 5 1/2 yrs since hes seen her. I really hope it doesnt take him that long to see her again.
Health wise she is doing awesome! We are going to Disney World in June for her wish from Make a Wish! Then to Pitt in Aug. for transplant camp and yearly checkup. Finally feel like we can make some plans!
Well thanks for checking on her. God Bless
Monday, January 5, 2009 10:35 AM CST We hope you all had a very Merry Christmas and a great start to a New Year! Destiny has been doing great. We were able to spend our first Christmas at home!! And we are still at home doing wonderful..... What an amazing new adventure for us.
Her and Bryson had a wonderful Christmas. We was able to spend time with my Mom and sisters with their kids. We went to Okl. and spent time with my dad and I got to see my best friend from when I was in high school for the first time in 13 years! That was really neat. And my neice Stormy got to stay with us a week too during Christmas break. We went to Lake Palestine and spent the day. Just going and going and having a blast, enjoying the blessing of being free from the hospital!! Now its back to school and hopefully I will be able to get back to work soon. She will be having an anniversary for her kidney transplant this month on the 27th. 4 YEARS!!! Thank God for organ donors!!
Thank you all for your continued support.
Thursday, December 11, 2008 11:37 PM CST Happy Healthy Holidays to you all!
Destiny had a little pnemonia after she was admitted for an EGD and Ileoscopy last month for the vomitting she was doing. All looked great other than alittle food impacted in her esophagus which was removed during the procedure and all is well again! Her esophagus issues really keeps us on our toes. Thankfully her graft looked awesome with no signs of rejection. She is now pnemonia free and doing great.
We hope yall have a wonderful Christmas and a Blessed New Year!
Love,
Christie and Destiny
Sunday, November 2, 2008 1:02 PM CST Hello.. We are doing good! Destiny had a blast on Halloween, she was a witch and Bryson was a power ranger. I will try to get pics on here soon. She has grown so much lately. I believe in the last update I mentioned doing iron runs for her anemia. Well it has worked a miracle she is so full of energy and vibrant.She's doing very well in school she has jumped to a level 3 in reading! She is just so awesome and such a great little hero!
Oh and we just found out Destiny has ANOTHER little sister!! Her dad and his wife have 2 girls now. So Des now has 3 siblings. WOW!! She hasn't gotten to meet neither one of them yet but is excited.
We truely apperciate all of your support and prayers!
C & D
Thursday, September 18, 2008 1:21 PM CDT I know... I know... I have been horrible at keeping you all updated. But no news is good news!! Just means we are living our life and no major things to update about.
We have had some hemotology issues here and there which we are now getting iron infussions to help Destiny build her blood up. Her counts slowly go down over the months. And her iron levels were really low so she has gotten 2 infussions and her counts are heading in the right direction with no blood transfusion!! Which as you can imagine is a great thing not to have to get one of those. She still has really high ostomy output and on lots of fluids, tube feeds and her big list of meds. But she is growing and doing amazing!! I am so happy she has done so well since our return back to Texas in April! She still has to fight that EBV which has been easier for her since lowering her immunosuppression. So medically she has been great! No inpatient trips! Thank you, Jesus!!!
She finally got her schooling started back this year. She is now in 1st grade and doing really well! She is doing homebound for the moment just trying to get her in a smaller class with less students and get an IEP and 504 all straight for her.
Thats about it for now... Her infussion is done we have to drive back home now!! LOL
Thanks for prayers and support!
Sunday, May 18, 2008 8:55 PM CDT Sorry again for the lack of updates we have had several ups and downs since our last update.
We made our trip to Pittsburgh and on appearance they were very happy with Destiny's progress. But then we had a CT scan and she had an enlarged lymph node in her neck with several nodes throughout her abdomen, so Dr. Soltys booked an O.R. for the next day for the removal of the node under her left jaw for biopsy purposes. As much of you know, the biggest fear for a transplant recipient is to develop a disease called PTLD (post transplant lymphonia disease) might not have spelled that right but anyway this is a very serious disease that can lead to death. So you can imagine the fear I felt when one minute "Oh she looks so great" to "We need to get her to the O.R. right away". Thank the Good Lord the biopsy DID NOT show PTLD but did show EBV cells in the node which is also serious but not near as scary!! So now back home with a much lower immunosuppression so her body can fight the EBV and weekly levels drawn to monitor how effective the lowering will be. She has to have another CT scan in 3 months but not scheduled to go back to Pittsburgh for a year. I pray we don't end up back there until then! It's so scary to go there... it always feels like we may not get back home for a long time! But I am so greatful to the transplant team there, they are always there for us and actually care about all their kiddos. I just love them and what they do for our children!
Shortly after returning home we ended up in the hospital in Dallas with a fever and extremely high WBC. Apparently it was an ear infection and were discharged with no antibiotics and no more fevers. But she is having a terrible time eating. She has been vomitting and low ostomy output (for her). Her energy level is slowly coming back so hopefully she will return to herself very soon. We have clinic tomorow and labs tuesday.
Please remember her in your prayers! Thank you
C~
Friday, April 18, 2008 0:23 AM CDT Quick update... We did get discharged after a scare from her biopsies coming back with rejection in her bowell but our transplant dr. did not believe it so we did another biopsy and there were fewer apotosis so he believed it to be a virus making its way through and sent us home. She has been doing good we went back for another scope and again better results without any extra immunosuppression. Then we got moved into our new home!!! It is great!!! We absolutely love it! Shortly after getting moved she got a cough and cold, it has lingered for awhile and now again she has a rash just like before so on IV benedryl again. Just hoping we can stay out of the hospital this time with it. I've been very busy trying to get settled in our new home and trying to get things ready for our trip to Pittsburgh this sunday. We will have a very busy trip with appts. almost everyday.
Please say a prayer for us to have a safe trip and come back home on time!!! And also for her to get some relief from this nasty rash.
Thanks for your support.
Tuesday, April 1, 2008 11:53 PM CDT Hi everyone sorry for the delay in updates, I've been really busy lately. Where to begin? Well I guess with Destiny and our latest on her health... We are currently in the hospital in Dallas. She awoke friday night with some major pains going on in her abdomen and saying her donor kidney was hurting so I brought her to the ER and we were admitted for tests, scans, scopes, and biopsies. The scan of her kidney showed a small cyst but they dont seem to think that could be what caused the pain and say alot of people have cysts in there kidney's but we are not going to just forget that it is there. We did have a urine culture come back so she is on antibiotics for an U.T.I. She has also been having a hard time eating over the last couple of weeks so they took her to the O.R. and did an EGD and ileoscopy and her esophagus was plugged and the opening to her stomach is very small so she may end up having to get another balloon dilitation done while we are in Pittsburgh this month. We're gonna see what they think when they see her April 21st. But the bowell and all looked good, I have not gotten any biopsy results yet. She's feeling much better now so I am hoping to go home tomorrow... We have packing to do!! YES, we finally found a house and it is absolutely gorgeous and I can't wait to get moved in it! We will be in the same city. We are supposed to start moving by the 7th so not much time to get packed when we have a set back like this.
And I'm still trying to get everything squared away for the transplant games and hoping to have some time to participate in all the fundraising events that are lining out. It really takes alot of time and preparations to do these things. And just hope the awareness of organ donation is reaching more and more people.
Thanks for your prayers~
Tuesday, March 4, 2008 11:12 PM CST I'm very happy to report that Destiny's platelet aggregation panel came back with much better results than the last one!! In Pittsburgh when we did the first one back in November, her platelets were not clumping together so she was diagnosed with what they thought was a congental platelet disorder or acquired glandzmens. Which both are not something we need in our lives! The way it was explained to me was there was an antibody blocking a certain receptor on the platelets keeping it from clotting to certain things, like other blood products. Which could cause her to have a major bleed out. And all procedures, like getting her caps put on her teeth and ileoscopies have all been on hold.
BUT...... Now... Thank the Lord!! The panel that was drawn Feb.21 came back normal!!! Her platelets are clumping properly!! It appears that the antibody is no longer there! The only adnormality in the entire panel was that they are slow to release, which the Dr. seems to think that that is normal considering the amount of meds. she is on.
Now we will have to run some more tests to see if we can find out why her platelet number is bouncing around so much. Its still a mystery why she would go from 600's to 100's and sometime lower all of a sudden. This week she is still below normal range but up a bit from last week.
She's been doing good. We've been spending alot of time with Bryson and they love to argue and pick at eachother. Funny for a minute but drives me nuts after a while.LOL
We continue searching for a bigger house and hope to find something perfect soon! Still hoping we can put off our trip to Pitt. for a few more weeks. I really want to spend a first Easter at home with Memaw!
I am enrolling her in the transplant games that are going to be held in Pitt. this year. That will be such a blessing to attend something that great. Our team is TEAM NORTH TEXAS (TNT). She's the youngest one on the team and gonna love all the attention!
Thats it for now. Thanks for always checking in on us and prayers.
C~
Wednesday, February 20, 2008 0:13 AM CST Sorry I haven't updated since we were in the hospital. We are out and back home. Destiny is doing much better now! Her platelets came back up to normal once the virus started going away so we are scheduled to go see Hemotology this thursday to attempt the platelet aggregation panel again to see exactly how her platelets are functioning.
That's really all thats going on right now, trying to push our next trip to Pittsburgh as far away as possible. She has missed so much school but continues to do very well. She is very bright but has a hard time concentrating most of the time...LOL Maybe getting her in the school house would help!! With home bound she is so relaxed she tries to cut jokes and play around the whole time. Little Clown! I just laugh and sit out of the way while she's doing school. She is such a character. It's just an honor to watch her grow and show her personality! Everyday I am more and more greatful to her donors and to God for allowing me to mother such a blessing!
Thank you for your prayers and thoughts.
Love, Christie
Wednesday, February 6, 2008 1:17 AM CST Hi just wanted to update everyone that Destiny is in Children's Medical Center in Dallas. We came in with upper respitory symptoms and a 102 fever. She is on antibiotics but so far the fever has been presistant. And not to mention we were supposed to go see Hemotology today outpatient to draw her platelet aggregation panel again but with the new sickness it would not be accurate. But to throw alittle more to the mix when they drew her labs when we got here her platelets came back at 16 so we redrew them because just this past thursday they were up to 241 and it came back at 11 that time. Then in a glance her nose started bleeding and we could not get it under control for about an hour. She was screaming at us for pinching it off and putting ice packs on it and I was just a crying, scarred to death we was headed for the ICU. But we finally got it to stop and we got a platelet transfussion, now her number is 260! I just hope they can figure out what is going on with them. We're thinking they dropped because of the new respirtory sickness. I wonder if this is the way its going to be now that everytime she gets a cold or something her platelets are going to disappear.? I sure hope not! Lots of thoughts run through my head all the time trying to make sense of it all.
Please say a prayer for her right now. Thank you and we love yall.
C & D
Sunday, January 27, 2008 0:20 AM CST Well alot has been going on with us. We have been extremely busy with many many appts. lately. Destiny's rash finally went away for several days then came back in a different fashion. Crazy! Then a couple of weeks ago we got a call after labs were drawn with a critical low platelets... they had dropped to 24 (normal is 140-450)! So this was very concerning and with her history of Evans syndrome we acted immediately with more labs, visits to hemotology and calls to Pittsburgh. As of last thursday her platelets are back up to 240 and the rash is gone!!! Don't know why but my theory is it was tied together. I might be crazy but kinda acts like antibioties. Which in Hemotology on thursday we drew some tests to check for that. At a later date we will redraw the whole platelet aggregation panel to see how her platelets are functioning. We go back to see the dentist on Monday and hemotology on Thursday.
MOST IMPORTANTLY ON THIS DAY!!! JANUARY 27,2005 DESTINY RECEIVED HER SECOND LIVE SAVING GIFT!!!Yes today marks her 3 year kidney transplant anniversary!! PRAISE THE LORD FOR THAT MIRACLE!!! Please pray for her donors family especially today as this is a very hard time of year for them. We are so greatful to them.
Thank you all for your support and prayers.
C & D
Wednesday, January 2, 2008 0:25 AM CST HAPPY NEW YEAR!!! MAY THIS YEAR BE HEALTHY AS CAN BE!!!
We made it home on Dec.27th and are doing good. We are still doing IV benedryl as needed for the rash. It's a very stubborn rash.. It makes you think its completely gone then it starts showing back up. We are scheduled to see dermatology again sometime this month, we are just waiting on them to call with the appointment. Other than that not much going on. Which is a good thing! LOL
I will update hopefully with new pics soon!
Special prayer request for our friends Myra, Kenneth and their family. Bill is going through some really tough times right now and they need our prayers. Thank you.
Tuesday, December 25, 2007 5:30 PM CST MERRY CHRISTMAS TO YOU ALL!!!!
We tried really hard to be home this year for Christmas but we did not make it:( Destiny had broke out in a rash on Dec.13 looked alot like a contact dermatitisis so we went to her pediatrician on the 14th and started a steroid cream and atarax. We did that for the weekend but didnt get any better or any worse so we made a trip to see our transplant dr. in Dallas on Monday 17th, he started her on oral steroids and an antibiotic for yeast. We did that for 3 days and was scheduled to return for a follow up appt. on Thurs. 20th (my bday..lol) The rash was almost gone so they were pleased and we went home... only to have it flare back up again on the 23rd with a fever. We came to Dallas to the ER and were admitted. Cultures have been ran from every direction and thus far are negative. Dermatology has been consulted and they do not think it is graft vs. host but agree with our transplant dr. that it has to be an allergic reaction but they think it is from meds. A delayed rash reaction from antibiotics that she received while inpatient after Thanksgiving. Dont understand it all but it makes sense when they tell you about how it can do that. We are hesitant to do a skin biopsy because of her platelet disorder.
So that is how we have spent another Christmas in the hospital.
I just pray it don't turn out like last year when we were admitted on Dec.23rd. We ended up not getting home until April 26th!!! So please say a prayer that we get to go back home and she can get over this mess.
OH BIG NEWS TOO!!!!! SHE LOST HER FIRST BABY TOOTH YESTERDAY!!!! BIG GIRL!!! So tooth fairy and Santa all in one night... how exciting! Santa did make his rounds through the hospital today so she wasn't completely upset with Christmas but I just so wanted to see her expressions at home after he came.
We had Bryson with us too when she spiked the fever so we had to make arrangements for him to get back to Dewayne. BIG thanks to my best friend Christie for taking him with her and making sure he was taken care of! We love ya girl. Wouldn't know what to do without you! You have been a true Godsend to us!
Let's see what else?! Oh, we still have no more answers with her platelet disorder. They want to run the whole aggregation panel again but she has to be completely well. So I guess thats about it. We really hope and pray you all have a very Merry Christmas and a Happy Healthy New Year! God Bless.
Friday, November 30, 2007 1:41 PM CST Wow.. well we did make it home and was able to spend Thanksgiving with our family! What a wonderful blessing! But Destiny's cold has lingered and on saturday night she all of a sudden became very ill and crying with an ear ache. She spiked a fever so I took her to Childrens Medical Center in Dallas and she was admitted to the ICU. When we got there her temp was up to 102.7 and her blood pressure was really high for her. They gave her stress dose of hydracoritizone and antibiotics then her pressure made a big drop so our fear was she was heading for septic shock so ICU was were she needed to be. She stablized and started feeling much better very quickly so Monday we got to move down to the GI Transplant floor. She did have a bad ear infection and none of her cultures came back positive so we did a round of antibiotics and was released home yesterday on Thursday. We have a follow up Dec.10 with transplant and Dec.3 with her pediatrician. I will try to update more frequently...I've had some friends calling with concerns because I havent kept up the way I should. I'm sorry!! :(
As for her results with hemotology... I got a call while we were in Dallas and they want the whole platelet aggrigation panel again and a plasma control panel. They have it narrowed to 2 different diagnosis'. Either a congential platelet disorder or an aquired glandzman platelet disorder. The aquired glandzman is extremely rare... like only 2 reported cases of it in the U.S. EVER!! So of course you can imagine my fear! She is so unique and every diagnosis begins with "It's very rare...." So I just give it to God and know that she is truely a miracle and going to be a medical legend! LOL Her story really needs to be put in the Medical Book. I hope and pray that she will tell her story someday and be able to help someone else.
But after the tests are reran and results are final I will be sure to let you know. Her amalyse continues to be high so we're just praying she will normalize and we will be able to spend Christmas at home this year!
Thanks for your continued support and prayers. We really do appreciate all of you.
Much love, Christie and Destiny
Monday, November 12, 2007 2:09 PM CST Hey everyone.. I'm so sorry I've been such a slacker when it comes to updating!!
Destiny is doing ok. She has been great for the most part. We are currently in Pittsburgh for our 6 month check up. We have had lots and lots of appts. We had some concerns about her pancreas because her amalyse has been extremely high but her lipase normal so its not pancreatitis. We did an ultrasound and a MRCP. The MRCP showed that her bile duct from the pancreas is a tiny bit bigger than normal. So they are not too concerned but do want us back here in 3 months! And of course if it gets too much more concerning we will come right back.
As for some of our other concerns... Hemotology! Destiny has been needing lots of blood transfussions lately and her platelets are alot lower than her usual so we have seen Hemotology while we are here and still waiting for those results to come back. They do not think it is the Evan's syndrome coming back but are concerned because she is having bruising and small bleeds around her gtube and stoma with what would "for a normal" person be a great platelet count!
She is determined to keep me on my toes!! That's for sure!
Renal is very pleased with her kidney function! Praise the Lord for all the good and bless us in the results of everything else!
We are hoping to return back to Texas on wednesday. Its still pending at this point on hemotology. And of course Destiny had to pick up a cold while we were here so as long as she has no more fevers I will be comfortable to go!
Please pray for her to get over this cold and get home back to our life that we have so much appreciated over the last 6 months!!!
Thanks for your support. And please continue to pray for Destiny's boyfriend, Kenneth as he is still here waiting for organs! And his dad, Bill, who is going through some challenging times. It was sooo great seeing them again! It was like a family reunion!! We love ya'll so much!
Christie and Destiny
Monday, September 17, 2007 10:38 PM CDT Thank you so much Cindy for putting Destiny's 4th anniversary pictures on here for us!!! You're the BEST! We love ya girl!
Destiny has been doing pretty good. We did have to go to Dallas last week to do stool cultures and draw an EBV because her ostomy output has been creeping up over the last couple of weeks. This week we will go back and have a scope and biopsy done. First scope since May! We've never been this long without one but she's been doing so good.
She's doing very well with her school work. I never really realized how little strength she has in her hands until now. Her writing with a pencil is a challenge for her! She'll get there though, she has already started improving. She loves doing all her homework after diner in the evenings. That's her favorite time to sit down with Mom and have "our" time. During the day she loves playing with her nurse, Francine. And Francine has been a wonderful help to us!
I'm starting a new job tomorrow!! First job in 5 1/2 years!!! I'll probally drag in tomorrow evening when I get off...LOL It's just a little job for a few hours a week but something to help us with our finacial state and MY SANITY!! LOL
Bryson has been spending alot of time with us lately. He is such a BOY!! He's a tornado! He and Destiny argue like crazy. Which is kinda funny for a little while but then...enough is enough! Destiny has finally gotten bold with him. She was always so timid and scared of him but now she's a big bully! LOL She pushes him around and bosses him... And she is a tattle tale too, he cant get by with nothing with her around..LOL
Well I better get myself ready for bed so I can make a hand at work tomorrow... this is going to be soooo weird!!!
Please continue to hold us in your prayers and all of our friends and their families too. Destiny's favorite boyfriend, Kenneth is still waiting for organs! Please pray for him to recieve his gift soon! And for Myra, his mother, for standing so strong by him.. she is an awesome woman!
Thank you! C~
Friday, August 31, 2007 11:54 AM CDT Thought I better do an update... Destiny is doing great! We are still waiting for her teacher to get assigned so she can start schooling. She will recieve an hour a day four days a week. Not much but we will be doing extra stuff that the teacher leaves for her to do.
She had an awesome 4 yr. anniversary party. We did a big balloon release in honor of her donors and to celebrate her gift of life. The local newspaper has done a story on her that will be in the sunday paper. I will add the link to the paper so you all can see what a celebration it was! We are trying to get some of the pictures posted on this webpage. So check back in the next few days to see them!
She has an appointment next tuesday to get two crowns on her teeth. Of course sedation and antibitics come with that so please pray that she does good with this!
Thanks for your support!
C~
The story will be in the sunday brunch section. Called "sending balloons to Heaven"
www.heraldbanner.com
Tuesday, August 21, 2007 2:25 PM CDT Hello everyone... I decided I better do an update since its been so long since the last one. Destiny has been doing pretty good. We did have to go to Dallas Children's for a blood transfussion and ultra sound last week, other than that we have been home!! I am so thrilled to report that the ultra sound showed the blood clot in her leg has resolved! We are just waiting for the final ok from Pittsburgh to stop the Lovenox shots, which I called today so hopefully someone will be getting back with us soon.
Destiny's birthday was a great day! She really enjoyed herself and it was so wonderful to be here in Texas with our family and friends. It was a great celebration. My baby girl is 5 years old now! And to think the doctors only gave her 6 mths. to live. But we all know GOD is in charge and miracles are happening everyday! I praise Him daily for the blessing she is to our lives. And I thank Him for the Pittsburgh transplant team for their knowledge and skill and of course our donors families!!
Speaking of that... Next week is Destiny's 4 year multi-vesiral transplant anniversary! Aug. 28th we will be celebrating her gift of life!! And remembering her donors family.
Thanks for your support and prayers. We are truely greatfull for each and everyone of you.
C~
Friday, July 20, 2007 10:09 AM CDT We had a very busy day in Dallas yesterday. Destiny had three appts. All in differenct buildings, so it was drive to one, rush to the other!
First we went for her first dentist appt. She did very good and the dentist was awesome with her. She has two cavities though so we have to go back Sept.4th for crowns. She will need iv antibiotics before she goes. She will be sudated for the procedure. So I'm not looking forward to that.
Next we had an appt. with Special Procedures, just for an EBV & CMV lab draw. We always have to go there to get these levels drawn, so that wasn't too much trouble.
Lastly we had GI transplant clinic where we sat and sat and sat..... So tiring! But they are very happy with how she is doing. She has grown almost 2 inches and gained 2.5 lbs. in the last month!!! They discussed making some changes to her TPN but orders had already been faxed for this week so probally starting next week we will go down on some of her calories from the TPN. Which as you know that is a great step in the right direction! Ultimate goal is to GET RID of that stuff!!! But even being on it for as long as she has, her liver numbers are all normal! Praise the Lord! Her ostomy output has maintained an average of a liter a day for the past month too. For her that is good! Sooooo.... with her doing so good, the Doc said we dont have to come back for THREE MONTHS!!!! WOW!!!! That means Oct. before we have to see them again as long as she keeps doing so great!! And Oct. is when we are supposed to go back to Pittsburgh for a check up. So maybe we can skip one of those..LOL
We do have to go back to Children's for an ulrasound of her legs though in the next couple of weeks. She has been on Lovenox injections for 7 months now! Her last ultrasound showed the blood clot in her left leg was still there and of significant size. So we are praying this has resolved and she can get off those darn shots.
Please pray for that as well for her. We are so thankful to all of you for your support and prayers!
Christie and Destiny
Thursday, July 12, 2007 11:15 PM CDT Hello... We are doing wonderful. Destiny has been doing very well. We are so thankful! She's getting so smart too! She can now spell her name and most of Bryson's with her magnets on the fridge. Still working on writing it though. She starts home school next month. We're excited about that.
Bryson's birthday was a blast. We had a Spiderman party with lots of friends and games. It was a very blessed day! I can't wait to do it again next month for Destiny!
Well thats really it for now. Which is good when there's not alot to report! Thanks for your support!
C~
Tuesday, June 26, 2007 0:07 AM CDT Hi everyone. I hope everyone is doing ok. We have been doing just fine. Destiny.. healthwise has been wonderful! Thank the good Lord!! Onory as can be though. Just kidding she is a great kid. She is loving her nurse alot and me too! Having alittle break every so often is awesome. Destiny has gotten to where she would rather her nurse come watch her than go anywhere. They just play and play. She's been anticipating her birthday coming up pretty soon. She wants to have a Caillou birthday this year. Thats her favorite PBSKids show. All day she talks about Caillou and has even named one of her boy babydolls after him. And another one after his little sister, Rosie.
She's not accepting the fact that Bryson's birthday comes before hers! LOL Hard to believe he will be 3 in just alittle over a week!!! He's been doing good too. He is alittle comedian. Loves to make people laugh.
I am very happy to be blessed with such wonderful kids. May GOD bless each and everyone of you for your love and support.
C~
Friday, June 1, 2007 10:56 PM CDT Hello everyone... I finally got my internet turned back on!! So maybe I can update more often...huh?! I hope!
Destiny has been doing pretty good.. She finally started getting better with the getting sicky and not being able to eat anything. Her scope looked wonderful and biopsy was good too! Her absorption seems to be better as well! Ostomy output is hanging around a better number too.
We had Memaw come stay with us for 5 days and that was loads of fun. I'm already missing her being here and she just left yesterday. Bryson is with us right now. So we have been pretty busy. I met with the school last week to try to get Destiny registered for next school term. Haven't really decided on how I feel about that yet. I was hoping to just get her home schooled but have a teacher come to the house but they don't offer that here in Greenville so we may let her go to school limited hours during the spring and just have her tutored 5 hours a week at home during the winter. I know she would love the socializing part of it all but her health is my main concern of course. And another new thing for us is home nursing is supposed to start soon which will be a big help for me to actually get a break for a short time. I probally wont know what to do with myself and I'm affraid I may not be able to let go enough to actually enjoy it. I am very paticular about Destiny's line and her care. Been accused of being anal!! But we'll see how it goes.
That's it for now... Please continue to hold Destiny in your prayers and all of our wonderful transplant friends and their families. Thanks for your support.
C~
Saturday, May 5, 2007 4:58 PM CDT Sorry its been such a long time since our last update. We did make it home safely and have really enjoyed being back in Texas. We left Pittsburgh on the 24th and got home on the 26th. It was definately an adventure!! Destiny did real good on the trip except she was not able to eat or drink the whole time she kept getting sick. I really don't think she was car sick maybe just stressed abit. Since we have been home she has been doing much better.. eating and drinking her usual. We went to Dallas on Tuesday to get that big old honking tube replaced with a nice little GJ mickey button again!! We are both so pleased with that. Then clinic in Dallas on Thursday went very well. We don't have to go back to clinic for a whole month! But Pittsburgh wanted her scoped within 2 weeks of the last one done there so we go back to Dallas on Friday 11th for that. Then hopefully stop the prednisone!
We kept Bryson for a few days... That was lots of fun! He is such a boy! LOL I've missed him so bad though. When they pulled up I went outside and he holared "Moma"! Made me cry of course!
My friend Christie and her son Mason have been just awesome for us. Destiny loves to play with Mason and he even enjoys putting makeup on her and playing dollhouse so he has been a great big help. And Christie has been a wonderful friend to me, helping me get back situated in our house and all. Not to mention taking that trip with us. Ya'll have been such a blessing and we love yall very much! Thank GOD for good friends!!!
We are completely heartbroken for the loss of a dear friends little boy, Caleb. He was a transplant survivor we met in Pittsburgh from Texas as well but unfortunately was waiting for organs again but his little body couldn't take no more so God called him home on April 29th. We ask that you all pray for his family to have comfort during this time of grief.
I will try to update again soon. Thanks for checking on us and as always thanks for your support!
C~
Thursday, April 12, 2007 10:11 PM CDT Well I am very pleased to report we are almost ready to go home to Texas. We went for clinic today and Dr.Kyle said we can go next weekend after getting IVIG again on Monday the 16th then another scope on Thursday the 19th to see how things look after lowering the prednisone again. We are planning on leaving here the 22nd; driving back home, which is going to be loads of fun but my dear friend from Tx, Christie is flying up on the 21st to make the trip back with us. Thank you, Thank you Christie!!!! We're just planning on making it an adventurous trip and take our time so Destiny doesn't get too stressed or tired on us.
She is doing and feeling much better. I've gotten her output down to were it was intially before all this virus and rejection hit us. She is still on much more prograf then normal but we can change that when need be. She's more herself now! Praise God... I was getting really worried there for a while but she's doing good so I think we should get home and enjoy some springy almost summer weather for a change!!!
Please continue to pray for us, that nothing comes up so we can make it home this time!
C~
Tuesday, April 3, 2007 10:29 PM CDT WE GOT DISCHARGED.... FINALLY!!!
Destiny is doing good she has been so good today being patient while I got all of our stuff put away and did meds. Its been so long I'm out of the swing of meds and we have had several changes too so getting back on track with all that is gonna be fun. Five weeks in the hospital adding and taking away really screws your normal rountine up.
We have to go for a scope on Tuesday and clinic next Thursday. No talk of going back to Texas so far. Her output is still up and things are just not right so I'm sure we will have to stay till we get them worked out. I definately don't want to go home prematurely and end up right back up here. When we go home this time I want to stay for awhile...LOL
Well please continue to pray for Destiny and all her friends and donors family. Thank you!
Tuesday, April 3, 2007 8:51 AM CDT We are sitting here waiting to see if we can get discharged today. Destiny has started coughing now along with alot of other people. I thought it was just allergies because things are starting to bloom but its getting worse. The fellow just came by and said we can go if her biopsies from yesterday come back clean of any activities. We are still battleing keeping her FK level up. I really don't know why we can't do this outpatient.
Well I will update again later today to let you know if we were discharged.
Thanks for your support.
C & D
Saturday, March 31, 2007 9:29 AM CDT Sorry for the delay in updates, there's really not alot to report. Destiny is still in the hospital and I really don't know why... She has been getting passes everyday and feeling fine. The only thing is her output is still about the same and her prograf levels and doses are really goofy. She is getting more prograf now then she ever has and her level is just not showing it! Remember I mentioned the balancing act betweeen rejection and EBV? Well it happened... Her EBV/PCR has jumped from 1300 to 39000 in just 3 weeks but they do not want to do anything about it other than the gancyclovir for now because they won't lower her immunosuppression at this time. That's a scarry number for us because she has presented EBV cells at only 5600. I've been trying to get her discharged but Dr.Sindhi just wants us to wait until next week after her biopsy. She's scheduled for it on Monday.
We have really been enjoying having our own vehicle here and going where ever we want when we can. Thank you Bill for making that long drive for us to have our car!!! We greatly appreciate it!!!
Please continue to pray for Destiny and all the other kids like her that need God's special blessings.
C~
Tuesday, March 20, 2007 11:32 PM CDT Good news... God has heard our prayers and brought our precious Destiny out of rejection!!! Praise the Lord!
Her output is getting better but still too high.. some things just don't change but at least its not 3liters. They finally cut back on her fluids and are giving her some free time but she is still on full calories from TPN, we started tubefeeds back tonight at a very low rate to see how she tolerates them. Tomorrow we start the slow wean off iv steroids, but for some reason we still have not been able to keep her FK level up. We came in here only taking 1.5mg aday and now she is on 7mg aday with a level of only 6.8 today. I don't understand that but we will get it all worked out I'm sure. Poor thing her blood pressures have been all over the place so we will see renal tomorrow. Last week I was worrying myself crazy with her heart rate going too low now I'm worried about her blood pressures being too high. It's probably just the iv steroids and all the fluids she was getting so we should start seeing a difference soon. I sure hope so! Really hoping we can get out of the hospital soon but we still have a few things to work out to get her back to where she was.
Thank you all for your continued love and prayers!!!! Special prayers for Kenneth, Caleb, and a new little friend Sarah who is also waiting for organs.
C~
Thursday, March 15, 2007 10:07 AM CDT The dreaded news came yesterday evening. Destiny's biopsy showed mild rejection. She was bolused with IV steroids and put on a twice a day dose. They also started her on antibiotics because of the fevers but it could be from the rejection so we will continue them until the cultures prove to be negative. She was started on gancyclovir to try to keep the EBV at bay while her immune system is hit to control the rejection. This is the first time she has had rejection since she contracted EBV from her kidney donor so I am terrified of this battle. I've witnessed so many other children fight this balancing act between rejection and EBV, you never know which way to lean. If you go too much one way then the other side is going to shoot straight up in the air! Its like a see-saw!
Her ostomy output is still way up but I think she is finally hydrated again. We went down on her stoma replacement to 1/2cc in per cc out and just watch her closely to make sure she doesn't get dry again like she was a couple of days ago. She's very tired and weak but able to walk to the playroom this morning which is great medicine for her!
I will keep you updated on our progress through this. She will be scoped and biopsied again on Monday 3-19-07... Please pray for her that we get this under control and she makes a full recovery! Thanks for your support.
PS THANKS TO CINDY AND MICHELLE FOR GETTING NEW PICS ON FOR US!!! WE LOVE YA'LL!!!
C~
Tuesday, March 13, 2007 9:46 PM CDT Well I'm sitting here very worried again. Destiny was feeling so good then all of a sudden yesterday she started putting out alot more from her ostomy and just not acting like herself. We ended up doing several boluses through the night and today. Now she is on stoma replacement and full calories from TPN over 24 hours. She has a fever tonight we drew blood cultures and sent stool cultures. Two of the stool cultures already came back negative so we went for a scope and biopsy. To me her bowell looks very angry and nothing like its normal appearance. We have been battleing with her FK (antirejection med.) over the past few days thats the main reason we were still inpatient so I'm worried she may have slipped into rejection or she has picked up a nasty virus or bug running around this cooty infested hospital. Bless her heart she was wanting to go out on another pass today to see her feller, Kenneth but couldn't with all this going on and the massive fluids. She didn't feel up to going to the playroom either. She went in and we got called to go to scope and had to leave then she wasn't up to going back.
Its like walking on eggshells the whole time your in the hospital becasue something like this can happen at the drop of a hat. The life of a post transplant child!!!
PLEASE PRAY FOR DESTINY!!! AND KENNETH AND CALEB THAT THEY GET A CALL FOR ORGANS SOON.
Saturday, March 10, 2007 1:10 PM CST I thank you all for so much love and prayers. I know this seems alittle nuts because we are supposed to do this and that then nothing gets done. I don't know if I'm coming or going anymore around here... Destiny ended up getting all the way down to interventional radiology for the biopsy and they decided it was not necessary to do the biopsy because her liver numbers had come down alittle after one day of no TPN and those couple of meds I spoke about in the last update. As of right now they have decided to change her to 3 days aweek of TPN and added lipids as well. We are doing lots of tincture of opium to try to slow her output, after almost 4 years I'm not very optimistic about that happening. Now they don't want to discuss retranplantation... I'm unsure if they even feel she would be a candidate! Anybody that has spent anytime around this hospital knows exactly what I am talking about when I say "I AM SO CONFUSED"!!!! Today I was informed that they want us to go to Boston,Ma. for some new study. I don't know all the details but its a new type of intravenous nutrient that is supposed to be easier on the liver. So they think she is a candidate for that so she can endure IV nutrients longer... and I guess with a miracle her bowell will get better in time. I personally don't see where it is going to solve our BIG problems but if it gives us more time with her then I'm all for it. So when things begin to develope with our trip I will let you all know. Dr.Sindhi said it should be within the next couple of weeks.
As for her and how she is feeling?! She acts like nothing is wrong at all and for that I am truly greatful!! She is just running around here ruling the roost. She still has coughing and gets nausiated from time to time but is very content with being here and playing all the time.
Thanks for your support.
C~
Tuesday, March 6, 2007 11:39 PM CST Destiny is still in the hospital, now her liver numbers are elevated. She went for a liver ultrasound yesterday but there was no indication to why they are up so much so Dr.Sindhi wants her to go for a liver biopsy tomorrow. They stopped her TPN, accyclovir, and bactrim for a couple of days to see if that makes a difference. He doesn't feel like it would be rejection but maybe TPN damage or medication induced. There has been alot of talk the last couple of days about whether she needs to be relisted for another multivesiral transplant. With her bowell never really working the way it should, her stomach not empting properly, and now elevated liver functions it just seems like it could be a possibility. I don't want her to have to go through it again but I want so much more for her then to have to be on TPN and massive fluids forever until she runs out of access then its too late to retransplant. That tube popping out last week has really been a stopper for us! I really feel like we need to do this now whether than waiting and waiting. She's almost 4 years out and it just hasn't given us a reason to think its going to get any better, as for the dumping issue. For the longest they have blamed so many of her problems on her esophagus and truely it is a problem but its not the only problem...
Please pray for her tomorrow that the biopsy goes well and the results are something we can fix! And pray for us to know whats best for her and to move in that direction. Thank you for your support.
C~
Wednesday, February 28, 2007 10:55 PM CST Well we didn't make it home. We got all packed up and was about to get Myra's van when Destiny's GJ tube popped out!! So we both had a major melt down and went to the ER instead and missed our flight home. We stayed 7 hours in the ER, they replaced her GJ MicKey with a GJ tube which we both can't stand because it hangs out. But she has not been acting right, very sleepy, vomitting like crazy, and her stoma doesn't look right so we cancelled another flight for today and ended back up in the ER and was admitted to the transplant floor this afternoon. The tube they put in was the wrong size and they put too much water in the balloon so that was irritating her stomach and she has poured out from around the tube but nothing coming through it so we are supposed to go back to interventional radiology tomorrow and get the right size put in. Hopefully she will feel better then but I'm so afraid something is brewing because of the way she is acting and very worried about her stoma and ostomy output. Its not up but down and her stoma is huge. I just don't know what to think about that.
Please pray for us both. This has hit us both pretty hard.
Monday, February 26, 2007 10:41 PM CST Went to clinic today and Destiny has been sounding a bit better so we have been released to go home. Our flight has been set up for tomorrow!!! I am alittle scarred but we've been away too long. I just hope and pray we can actually stay home until we are due back in six months!
Well I better try to get some rest so please say a prayer that we have a safe trip and God be with us through our transition.
Thank you!
C~
Thursday, February 22, 2007 4:43 PM CST Well the biopsies came back better, still a couple of EBV cells in her stomach and ecinophills in her esophagus. They are happy with the treatment we are on for now. Dr.George said we could go home, this was on Monday we still had to go in for the citagam on Tuesday and get one more dose after this in two weeks which we can do at home, but when we woke up on Tuesday Des and I both were kinda punky feeling. She has had quiet a bit of coughing and congestion so we decided we better hang out and make sure its not something bad. So today we went for a chest xray and clinic after. Her xray was clear but Dr.Sindhi listened to her and heard her cough and said she probally has a viral bronchitis. He didn't want to start any antibiotics unless she starts having a fever so with that we are staying in Pittsburgh for the time being! We will watch her over the weekend and get labs and go to clinic again on Monday, then make a decision on going home to Texas!! I am SO ready to go home... and Destiny is getting more and more excited about opening her Christmas presents and seeing her friends Christie and Mason, and of course Memaw and Bryson too!!! We miss everyone so much.
On a funny note we went on a double date last night and had a blast! We went with Kenneth and his older brother Dustin to see Disney on Ice "Monsters Inc." It was alot of fun and Destiny really enjoyed herself. I really enjoyed it as well. To see how much she lights up when she is around Kenneth is so funny. She really loves him! Today the social worker at clinic was asking her about "Make a Wish" and what her wish would be... her response was "I want Kenneth to get organs for my wish"!!! I just bursted out with tears. Bless her heart she has a heart the size of Texas!!!
Well please pray she gets over this and it doesn't develope into anything worse so we can make it back home soon! And as always pray for Kenneth and Caleb to get their call soon. And all our other precious friends and their families and our donor families. Thank you... God bless you all for your support!
C~
Friday, February 16, 2007 11:44 PM CST Well Destiny had her EGD and ileoscopy today and did very well. It all looked good but we will have to wait on biopsy results to know for sure wether we are on our way back to Texas. We have clinic Monday and another run of citagam on Tuesday then "hopefully" fingers crossed we get to go home after that!! She seems to be feeling ok she has had a couple of nights of reflux and heartburn throughout the night but the child has been eating like a horse!! We have breakfast, snack, then lunch then she thinks she needs to go visit Myra and Kenneth so she can ask for food there as well... And of course Myra is spoiling her more rotten than she already is! She can eat a full meal with them then turn around and come back over to our room and want more snack then another supper. She acts like she's on major steroids but shes only on her replacement corteff for the adrenal insufficiency. She's just bored I think with being here and the routine isn't very exciting being pretty much stuck here. I'm so ready to get back home and start our house hunting again and get my hands on Bryson... I miss him so much. It's alot worse this time because I've got to spend so much more time with him when we were there and now I haven't seen him since New Years...
Well please continue to pray for us and all our other little friends. Special prayers that Kenneth and Caleb get their call for organs soon! Thank you.
C~
Sunday, February 4, 2007 10:02 AM CST Still in Pittsburgh... Will be here at least through the 16th of Feb. In clinic last week Dr. Sindhi agreed that he would rather have her EGD and biopsies done here that way they can see them immediately and make changes if need be. She will go in for citagam on the 6th, then the EGD is scheduled for the 16th. She is acting better not getting sick as much and not coughing with every bite of food.
We had a very fun outing with our friends Myra and Kenneth yesterday. We went to our first ever professional hockey game. We got to see the Pittsburgh Penguins beat Washington 2-0!!! GO PENS!!! One of the star players Mark Recci #8 donated a suite to the Ronald Mcdonald house and we were blessed to be able to go and watch the Penguins in action!! Destiny and Kenneth both had a blast. It is so nice to be able to do something fun for a change. We met Mr.Recci's wife who is a really nice lady, she brought the kids autographed pictures of Mark. Then you should have seen Destiny's face when ICEBURGH the Penguin mascot came through the door!!! It was to die for. She was scarred of him at first but warmed up to him quickly. I was able to take some pictures, when we make it home I will do my best to get them on her page for you all to see.
A big THANKS to the Recci family and the Ronald McDonald House for the wonderful memorable day!
Please continue to pray for us and for Kenneth (still needing organs!!) and all our little friends and donors families.
C~
Sunday, January 28, 2007 12:54 AM CST We are still in Pittsburgh at the Ronald McDonald House. Things are better but still not right. They did find EBV cells in her stomach biopsy which is not good! She stays sick all the time with nausia, vomitting, and reflux. We go back to clinic tomorrow to decide whether or not she is well enough to go back to Texas. She will need another EGD in Feb. to biopsy her esophagus and stomach to see if the EBV cells and ecinophils are gone, if not we will have to try something different. Right now she is just on citagam every 2 weeks for the EBV and the flowvent inhaler for the ecinophils. I just pray she will get back to where she was before all this happened!
Thats it for now she is standing here wanting to go eat. Sometimes I wish she just didn't want to eat all the time because it just makes it all worse. Bless her heart!
Please continue to pray for her health! I will try to update after we find out more tomorrow. Thanks for your support!
C~
Thursday, January 18, 2007 11:53 PM CST Sorry I have been unable to update. My computer doesn't want to work here anymore because of my dial up provider I guess so I have to borrow the nurse's. LOL
Destiny is doing good. Bless her heart she is so strong and brave! She finally got her new line today and they did not have any trouble putting it in. Dr.Fitz did a good job and I had to apologize to him because I haven't liked him for over 2 years now because I thought he was the one that "attempted" to pull one of her lines in 2004 and was unsuccessful and she returned with a HUGE hematoma. But today I found out it was another Dr. I felt so bad!! I am very impressed that she did not come out today looking like she been beat or anything, they cleaned her up good and put nice dressings on her. Most of you know what I'm talking about when I say that...
As for the rest of whats been going on... She had an EGD (upper scope) yesterday to biopsy her esophagus and stomach. Results are in and theres no rejection but lots of "allergy cells" in both, so they are starting her on a steroid inhaler. I just wonder if the change in environment isn't what triggered that. Pa. to Tx. is a big difference! She had an upper GI that showed her esophagus is empting and with the EGD they decided she does not need a dialatation. They do want to do a cookie swallow to see how well she is swallowing food, its scheduled for tomorrow but I think we will wait until next week... 2 days of intubation with anesthesia will probally throw her off!
We may get discharged next week but we have to stay in Pittsburgh for at least a week to make sure she is going to be fine. We will continue the antifungal medication for I think 3 more weeks. Her lung has been much much better, we just had to dry her up to get all the junk out of there. Both days of anesthesia she was extibated and in recovery on room air immediately so that is wonderful!!!
I thank you all so much for the prayers and support. Our prayers have been heard. Praise GOD!!!
C~
Monday, January 8, 2007 0:15 AM CST Jan.6,2007
Thank you Cindy for updating when I was unable to. Hopefully I will be able to catch everyone up now.
I'll start at the beginning...
On Dec.23rd Destiny was admitted into Children's Medical Center of Dallas with a fever and upper respitory congestion that turned out to be RSV. On Dec.26th we were about to be discharged when she began to not acting right and started running a high fever again.. That night she went septic with pressures of 80s/30s and was transferred to the ICU. She was already on massive antibiotics because they just wanted to cover her for the fever. She spent a couple of nights in ICU with many tests and loads of cutures. Late Dec.27th cultures from her broviac central line became postitve for yeast. YUK!!! Which most of you know that is the ugliest bug to try to clear. Yeast has a tendacy to hide so we began more tests. Her echo, renal ultrasound, and eye exam were all clear so the doctors in Dallas and Pittsburgh were all optimistic on trying to clear the line with anifungal medications. There has been so much happen since then... First they wanted to do a MRV to check for vascalur access in case the line had to come out, which did not have a good outcome. I don't understand why because she has only had 5 lines total and I know so many kids that have had way more that that but apparently she has one spot left with many occlusions and narrowings throughout. So when her cultures on the 29th and 30th grew out again I was really scarred and wanted the line out but the doctors in Dallas were not wanting to do that so we are now in Pittsburgh, we got here on Jan.3rd and thus far the line is still in with no positive cultures since the 30th.
Now we have more issues to deal with... She now has a blood clot in her left leg and I can't help but to blame Dallas because they gave her FFP and twice the amount of blood she was supposed to get and stopped her anagrelide which is her medicine she's been on for along time to bring her platelets down. Because she always has high platelets so when they said she needed FFP (fresh frozen plasma) because her clotting factors were off I thought that was weird but I know yeast can do some pretty weird things so it happened and now I'm kicking myself...big time. So she now has to suffer for the next 6-12 months with getting Lovenox shots twice aday. Hemotology came to see her and said they have already done the whole workup to check for clotting disorders when she had the last one and nothing showed but they would see if they could find a reason why she is so easy to clot.
She's been throwing up and her belly has been distended since she was in the ICU in Dallas. They scoped her and I couldn't really tell much by the way it looked there but she was scoped here in Pitt and her bowel looks great she's just not able to eat without getting sick. There was no rejection... Praise God. We did an ultrasound of her abdomen as well as her leg here and she also has alot of fluid around her whole belly area so we are doing albumin and lasix to try to pull that in so she can get rid of it. We are going for an upper GI to check her esophagus this coming week and if it appears to be working properly we will probally do an EGD and check her stomach from above.
As for the line, we were going to do ambasome locks but we have been having so much trouble with the line clotting off that we cant take the chance of putting that medication in there and not being able to get it back out so since the cultures have been negative they want to thread a new line in the same place. I'm not too sure how I feel about it but we really don't have a whole lot of choice beings that she is going to need line access for a very long time to come.
Jan.7th
Today has not been a good day, Destiny has been very punky and sleepy all day. She has began to have a fever again and her oxygen saturations have dropped so she is now back on o2. We did a chest xray and it showed alittle of a collapse and fluid in her right lung so they put her on another antibiotic and ordered chest pt every 4hours.
As you can see we desperately need your prayers.... We greatly appreciate all the support and love from everyone that has been calling to check on us. Thank you and God bless!
Christie and Destiny
Wednesday, December 27, 2006 1:35 PM CST This is Christie's friend, Cindy. Christie wanted me to post for her and request a bunch of needed prayers for Miss Dess. She was transferred to PICU in Dallas last night after struggling alot of yesterday. She is having low blood pressures with high heart rates and is also on oxygen. They arent quite sure what the cause of everythig is as yet--she appears to have an infection somewhere but they arent sure of the exact cause. She will be going for CTs and a bunch of other tests today. She has a spot on her lung they need to investigate further. Christie will post more when she can---until then please say some prayers for Destiny and for Christie during this very stressful time.
Monday, December 25, 2006 1:51 PM CST Merry Christmas to everyone!
We are inpatient at Children's in Dallas. Destiny's respitory congestion got worse and she spiked a big fever so we came to the ER and they admitted her and ran cultures and virus swabs all that. Bless her heart she has RSV!! Her chest xray showed a spot on her lung so they started antibiotics for that. She is feeling better, up and playing right now but has a pretty junky sounding cough. Her fever finally broke early this morning. We went for a repeat xray this morning but haven't heard any results from that yet. If it looks good we may be able to go home tomorrow on antibiotics.
We missed Christmas with everyone else but Santa made his rounds here at the hospital and she got several great gifts. And he made it to our house as well so she will have a big suprise when we do get home! Bryson had a good visit as well. We were hoping to have them together to open their presents together but what do ya do?
Ok Doctor just came in and said there is no significant change in her xray so we could possibly go home tomorrow, now depending on her night and if the fever stays away! Let's all pray for a full recovery real soon!!!
God bless you all and your New Year.
C~
Friday, December 22, 2006 0:14 AM CST We finally got results from the ultrasound and "Thank you Jesus" it all looks good but her labs from this week show a high amalayse as well. Down alittle but no where near normal so they want to draw some other special labs probably after Christmas. If we can stay away from them that long. Des has had some complaints of hurting lately and then today she woke with upper respitory congestion and just has not acted herself all day. Her temp was up alittle briefly but came down within minutes so it'll be along night tonight for me, I'll be up all night checking her... Dewayne says Bryson has some sort of a rash tonight so I don't know how Christmas is going to turn out with all these new developments. We had planned to go to my Moms Christmas Eve then having both kids here for Santa's visit. I hope we can still do that. I will keep ya posted!
We wish everyone a very Merry Christmas and a Happy Healthy New Year!!!! Please remember to pray for my babies as well as all of our other transplant friends and families and all our donors families as well! God bless you all!
C~
Thursday, December 14, 2006 11:08 PM CST We are doing alright. Des had a GI appt. today in Dallas and we ended up having to do an ultrsound of her pancreas and liver while we were there because her amylase was sky high on monday and I just found out about it today... This whole system here is really getting annoying, its nothing like Pittsburgh! In Pitt when we got labs on Monday we got results on Monday but here its like pulling teeth just to find out how her labs look. Along with all the other political mumbo jumbo that I've been dealing with like Medicaid, SSI and trying to get nursing, schooling, a local pediatrician...... I'm ready to scream...LOL I never knew coming home to Texas after being gone so long would be so much paperwork. But you know what?!?! It's so worth it to be HOME!!!!
Anyway I don't know when they will have results for me on the ultrasound but hopefully soon. Her Lipase was way normal and she doesn't act like she has pancreatitsis again so maybe it was just a fluke... Let's pray!!!
Thanks for all your support and thanks to all the people that have helped make this a wonderful year for us. We miss all our old friends but are enjoying making new ones here as well. God bless you all and God bless our donors families!!!
Sunday, December 3, 2006 10:41 PM CST We had Christmas pictures taken today and Destiny was such an angel but little brother Bryson was a terror! They both missed their naps and it took forever so they had reason for being upset but they both look absolutely beautiful considering the circumstances. I can't seem to get them trasferred to the site without some fuzziness. I'm just happy I am able to share them with you all.
She's doing well been getting alittle sicky this weekend, hopefully nothing is starting up. I think its just her normal "ok I still have to be careful what I eat" episodes.
Thanks for checking in on us and please continue to pray for Destiny and all the other little children that need our support!
C~
Wednesday, November 29, 2006 0:20 AM CST We hope everyone had a wonderful Thanksgiving! We had a great time at Memaw's house. Destiny ate way too many green beans though...LOL That was her favorite thing to eat. We played games and just had a good time. Too bad Bryson was so sick we had to keep him and Destiny away from eachother and then bless his heart he had to go to the Emergency Room with a real high fever. He has pnemonia, poor little guy. Destiny has managed to stay well... THANK GOD!!! But Bryson is much better now and hopefully will be able to come spend the weekend with us.
Destiny had her first appointment with the nephrology (kidney) doctors here in Tx.yesterday. They seemed like a very pleasant crew. He is alittle concerned that her bottom number on her pressure is too high so I have to record for two weeks and fax it to them, but we don't have to go back to see them for 3 months! And we just went to once a month GI visits!! WOW... I won't know what to do with myself...LOL
Well I guess that's it for now. Hope everyone is having a great winter and staying warm... We are for now! Its actually supposed to get cold here this week..Brrrrrrrrrr
Thanks for the love and support.
C & D
Wednesday, November 22, 2006 0:14 AM CST ** HAPPY THANKSGIVING **
Sorry its been awhile since I last updated. Destiny is doing good not alot to report which is a good thing!! She's just growing up more and more everyday. Her favorite thing to do is to stay home and play games all day! She likes going to Memaw's house too. Memaw was actually able to come stay a few days with us and we had a wonderful time. We are planning on going to her house and being with the whole family for Thanksgiving. This will be Destiny's first Thanksgiving with her family and my first in 4 years!!
I wanted to let everyone know my email address has changed and I lost all my email address's and websites so if you could contact me and give me websites again that would be great!
We hope everyone has a wonderful holiday. We have so much to be thankful for! God bless you all and please continue to hold us in your prayers. Thank you for your support.
C & D
Saturday, September 9, 2006 10:19 AM CDT Oct.25, 2006 3weeks home.
Well we have now spent a few more days in Childrens of Dallas. We went in last wednesday night with a fever and ended up staying 5 days. We never found out what the fever was from but she just wasn't herself for several days then she started acting better so we were discharged monday night. They did multiple workups on her. No cultures came back positive. She had a chest x-ray that was questionable so they did a ct scan from head to pelvic and it showed mutliple small nodes in her abdomin and pelvic area, which scarred me to death because they were working her up to test for PTLD (post transplant lymphonia disease) NOT A GOOD THING!!! After calling Dr.Kyle in Pittsburgh I felt a great relief, he assured me she did not have PTLD but he would request her scan to be sent to him so he could look at it personally. Its just such an adjustment going to a different hospital and dealing with new people. My comfort zone will always be Pittsburgh, I guess! We have to go back to Dallas on thursday to meet with the transplant team there.
We are missing our friends in Pitt so badly. Destiny has showed out so much since we have been here. She told me today she wants to move again I asked her where she wants to move to and she says the Ronald McDonald House. She cries for Kenneth alot, then she like gets mad at him and says she dont like her boyfriend anymore. I think she is just upset because he's not here and she misses him so bad. It's sad!! But I'm sure we will get it together and find its not so bad after all. And we will plan to see Kenneth again as soon as possible....Hopefully in S.Carolina though not Pittsburgh!!
I want to apoligize to many friends for not being able to email you, its due to not being able to pull my email address from aol because we don't have a local dial up number in this town. I am able to check my email but cant get all my saved info. I will keep trying!!
Please pray for us! And for all our wonderful transplant friends. We love and miss you all very much!
Christie and Destiny
Monday, August 28, 2006 9:23 PM CDT Destiny celebrated her 3 year post mutiversiral transplant anniversary today. We were hoping to be at home in Texas to have her a small party with her family but we are still in PA. for now.... But good news is we have a house.It will be open in 2 weeks so we are waiting to begin our trip home until then. Its gonna take us alittle while to get everything set up with a new homecare and doctors and all that. But we are getting more and more excited. Best part is my best friend, Georgia, is going to make the trip with us to help me out! So greatfull to her for that!!!
Our wonderful friend Kerri has truely been a big help by doing the foot work for us by going and seeing and taking pictures to send to me. She has been awesome. Thank you Kerri!!
Today, ecspecially we have to give great thanks to Destiny's donor and her donors family. Without them she would not be here today, getting ready to journey back to Texas. God bless them! Please pray for them as today we celebrate Destiny's gift of life but today they grieve for their loved one. I have reminded Des all day to thank God for them and what they have done for her. She may not totally understand it all but she does understand that she was really sick and needed a new belly and bowel.
Please continue to pray for her! Thanks for your support...
C~
Tuesday, August 15, 2006 11:42 PM CDT Hey everyone...We're doing pretty good. We've had some really good days but some very sad days as well... One of our little friends we've known since we first came to Pittsburgh has earned his wings and joined our Father in heaven last Thursday Aug.10. Little Justin will be missed greatly and I ask that you all pray for his mother,Lisa and the rest of his family.
As for Des she had a wonderful 4th Birthday and enjoyed her party very much. Big thanks to everyone that could make it and all the wonderful gifts! She's still got one suprise coming tomorrow.... I was able to get her tickets to see the Wiggles again this year and we are going to have the pleasure of attending the concert with one of her favorite friends, Makenzie! She has no idea!!! It ought to be loads of fun!
As for making it to Texas soon... We're still trying to find a place in the Greenville area. It's getting more and more stressfull everyday. I was sure hoping we would have more options I guess. But we are still looking and are not giving up by no means... We NEED to go home!!
Well continue to pray for us and our journey home as well as all our precious friends! Thank you!!
C~
Tuesday, August 1, 2006 8:30 AM CDT I am happy to report we had a wonderful time at Olivia's house. Destiny just played and played! She says 'Liva has the best toys. LOL Olivia is such an ispiration, she is doind so good! And Niagra Falls was just Lovely! Big thanks to Roxanne and Bill for welcoming us to their home and being such a great support. We love ya'll! I will try to get pictures posted soon!
Des is doing wonderful. We have three appointments this week and we will know how close we are to getting to Texas by the end of the week. I'm pretty sure its gonna be after Destiny's birthday (Aug.11th). We are looking forward to seeing alot of our transplant friends coming in for camp weekend. And I guess I need to start planning a Birthday party here instead of waiting until we get to Texas. But the really cool thing is... she can have a birthday party here then have her 3 year transplant anniversary party in Texas with all her family! Her anniversary is Aug.28th. WOW!!!! I can't beleive its already been three years! What a great blessing!
Thanks for your continued support and prayers for us and our donors families.
C~
Saturday, July 22, 2006 12:41 AM CDT Sorry I haven't updated in a while...... Where do I start?
Lets see... Medically Destiny is doing pretty good. We did spend a few more days in the hospital last week. She began complaining with her back hurting again and we ended up in the ER, she was in so much pain she just cried and screamed and the ER Doctor gave her some iv pain medicine that made her feel much better. We were admitted and they immediately started her on iv antibiotics because her urine specimen showed lots of bacteria in it. After starting the antibiotics she started feeling much better. We did an ultrasound of her kidneys and all 3 looked good with no inflamation or anything so they ordered an MRI on her spine, I'm still awaiting the final reading on that.
We went to clinic this past thursday and got some big changes made to the good!! She is now down from 20 hrs. to 10 hrs. aday of tubefeeds which is wonderful because she hates being hooked up all day and now she is hungrier so she's eating again! And we went to every other week labs. Very remarkable beings she is still on TPN but only getting a small amount at night and has remained on the same ingredients for months now.
We got approval to go to New York next week to spend a couple days with Destiny's real good friend, Olivia. We are so excited about going!!! Can't wait to update about our trip!!!
AND........... Our move to Texas is coming up so quickly!!!! I'm having a difficult time getting a house though so we're not definately sure where we are going for the first week or so. Probably going to stay with Dewayne and Bryson until we can get in some where. It's just so difficult to decide on somewhere without seeing it. I know it will all work out though. God has blessed up so much. I know He will provide for us! We will miss our friends and support system of being here but we so need to be with our family now! We've missed them so much and they have missed watching Destiny grow and progress to the little miss that she is today!
God bless you all for checking on us and keeping us in your thoughts and prayers. Please pray for our donors families. And our friends... Kenneth, Hannah, Justin and Nicholas.
C~
Friday, June 23, 2006 11:37 PM CDT Well Destiny missed her friend Kenneth so she decided we needed to go stay a couple days at the hospital so she could see him..LOL We ended up in the E.R. sunday afternoon because she was complaining with her lower back hurting her real bad again due to the UTI. So they decided to admit her to start her on iv antibiotics beings the oral antibiotics she was on for 2 weeks made no change in her cultures. Monday they wanted a ct scan of her native kidneys to make sure there was no kidney stones or anything that was causing her so much pain and Thankfully there was not! She does have some hydronephrosis, which is urinary tract reflux, but she's had that since birth so I don't feel there's any major reason for worry there. Her transplanted kidney is looking just fine. The doctors want us to go see urology though to get their opinion on everything. We got discharged on tuesday and she is doing fine now. We did have one day of high pressures but everything is good now and she will remain on iv antibiotics for a full 10 day course.
Please keep our friends Kenneth, Hannah, Madison, and all the children that are going through a tough time right now in your prayers and thoughts. And keep the Johnson family in thought as their son exited this world, were he fought a very brave fight, to join our Father in Heaven. Continue to pray for our Destiny and her donors families.
Thank you!
Thursday, June 8, 2006 10:17 PM CDT Destiny is doing pretty good. She still has a UTI and we're doing antibiotics for that and she seems to be getting better.
Yesterday (Wednesday) we went for a walk down to the park right down the road from the Ronald Mcdonald House and she got to swing and ride the merry-go-round for the first time ever! That was so exciting for her. She really enjoyed it.
Then today (Thursday) we went and got her her very first hair cut! She looks soooooo cute! I told them not to cut those precious little curls off the back though!! But she now has bangs and its trimmed around her face. Its absoutely adorable!!
Hope you enjoy the new pictures of her and a few of her wonderful friends. Thanks so much for your support and prayers for Des and her friends as well!
Love,
Christie
Friday, June 2, 2006 10:48 PM CDT Des is doing good, we did go to the ER a couple of days ago. She was complaining of some pain in her lower back, turns out she has an Urinary Track Infection so we are doing antibiotics for 2 weeks. She's already feeling much better. Thankfully!
Great news!!! We are planning our return to Texas for late July early August!!!! I've been searching for a place in the Greenville area so we can be closer to Dallas Children's Hospital. Our doctors here are making contacts there for a GI, renal, endocrine and a pediatric surgeon. I'm very nervous but very ready to go home! Destiny wants to see her Memaw right now she says..LOL She's already been packing her shoes up for Tx. She is hysterical!!
We will continue to be on everything she is on now down there. I just pray in time her bowell will slow down. It's alittle better now then it was a year ago so who knows. It could happen! I keep reminding myself "nothing is too big or too small for God to handle". With our prayers and patience... in HIS time all the kinks we are dealing with will iron out.
Well I better go... Please continue to pray for us and for our friends... Kenneth, Justin, & Cory & all the other children that need God's special help right now.
Thank you for your support,
C~
Monday, May 15, 2006 1:41 PM CDT Hope everyone had a wonderful Mother's Day! Thanks so much for the wishes and blessings sent our way.
There's nothing I could have asked for to make my Mothers day any better except to be in Texas with my mother as well as both my kids! I did get part of that wish... Bryson is here with us until tomorrow. He is growing up to be a little man and I'm missing so much of it, its sad but we do what we have to do!
Destiny is doing ok we went through a bad spell last week with extremely high outputs and sugars dropping, pressures all over the place, low grade temps and that sort of thing. She seems to be alittle better now. We didn't have any positive cultures come back so thats a good thing! We are going for scope in the morning though so we'll see how that looks. I honestly don't think she's rejecting but better safe than sorry!!!
In clinic last week I got some things off my chest with Dr.Sindhi about her STILL being on TPN and almost 3 years out of transplant she is STILL on lots of fluids, iv meds., and unable to eat like she should be able to. She is still having to have her belly vented all day or she gets sick. So we discussed all these things and he said we may need to go to Columbus,Oh. for motility studies to see just what her stomach and bowell are doing. We've been optimistic about her growing into her bowell and the absorption getting better but on her best days she's still putting out way too much. This is very scarry to me because as most of you know alot of our long term transplant friends have been relisted for organs again because of similar reasons. I hope and pray we can do something different so that we don't have to go through that again. I'm just so greatfull to have her here and she's finally growing and looking really good. We were blessed with a wonderful liver too because she has great liver functions even after all this time on TPN. Let's pray they stay wonderful and her absorption improves!
Well that's it for now. Thank you for your support and prayers....
Have a great day!
C~
Sunday, April 23, 2006 1:28 PM CDT Sorry I haven't updated in a while my computer is shot! But things are going pretty good.
Destiny is doing well... Growing up on me. She's walking by herself and everywhere which was a problem being on tubefeeds 24 hours a day so we increased her rate and gave her 4 hours of total freedom!! During that 4 hours she is all over the place and into everything which is just amazing to see. I can't get over how much she has grown in the last few months. We have went through all her clothes and she has hardly any left..LOL
Her broviac is still giving us alittle grief. It's clotting like crazy and her heart rate is going real high at night when we hook her up to her fluids. We did the whole cardiology work up and they seem to think its the rate of her fluids but I really don't agree. It's frustrating but what do ya do?!
And my little eating monster does not eat anymore. I really don't know why except she knows she gets sick alot when she eats so she's older now and realizes sometimes its just not worth it. She gags when most things touch her tongue and the reflux is just aweful. It makes me sad.
All in all she is doing good enough that they are trying to get us doctors set up around the Dallas area so we can get back to Texas hopefully by this summer! We miss our family soooo much!!!
Thanks for your continued support and prayers.
Sincerely,
C & D
Wednesday, April 5, 2006 11:16 PM CDT Destiny is doing ok, we had renal clinic today and got a good report and don't have to go back for 3 months! Unless of course something happens, but we are optimistic she's going to behave!!
We are gonna make a special trip to clinic tomorrow because her broviac site looks aweful. It's oozing and red, so we may end up on some antibiotics. It's just not healing as fast as it should. I just pray we don't end up with an infection and in the hospital. I've had enough of that place!!
Keep her in your prayers. Thanks for your support!
C~
Saturday, April 1, 2006 10:47 PM CST I wanted to update everyone on our last couple of days...
We went to the ER friday morning because Destiny's central line popped and we spent 12 1/2 hours in the ER trying to repair it! We repaired it twice in the ER by the IV team and it leaked both times so they called the IR and they did a repair on it and it leaked again so we had to be admitted and a regular IV put in her wrist to give her some fluids and her IV meds through the night. Then this morning she had to go to the OR to have a new line placed. She did well and we were able to be discharged again this evening. She is in some pain but will get better. The line works wonderful now. Not too sure I like were it is placed, it's kinda under her arm alittle bit and that is so sensitive there to do dressing changes. I just hope her labs look good on Monday and she has an uneventfull "rest" of the weekend!
Thanks for your continued prayers and support!
C~
Saturday, March 25, 2006 6:01 AM CST Destiny came through her procedure very well and we were discharged back out of the hospital on Tuesday afternoon. The scope looked alot better than the previous one with no rejection. She still has gastritis in her stomach and we are waiting on the stains to come back to tell if the EBV cells are gone. There was a couple questionable places in her stomach and duodeom. I hope its nothing.
She's feeling fine though and acting wonderful. I do wish to ask for prayers for her Memaw too though. She is in the hospital in Texas with many health issues. It is so hard being here in Pittsburgh and not being able to help my Mother. It breaks my heart! Please pray for her, her name is Carolyn.
Thank you for your continued support!
C~
Sunday, March 19, 2006 10:46 PM CST Well Destiny has been doing fairly well since our last update, she has been fighting a cold for about two weeks I wish would go away! Her EBV did jump from 9400 to 22000 though. So we are scheduled to go be admitted to the hospital tomorrow for a transfussion and IVIG then on Tuesday she is scheduled to go to the OR for an EGD and illeoscope to follow up on the EBV cells that were found in her grafted stomach in January.
She's been missing her Bubba alot... Poor little thing!
Please continue to pray for her and that this procedure goes well with good results.
Thank you for your support!
C~
Sunday, March 12, 2006 10:45 AM CST Destiny and I just had a wonderful 6 day visit with her little brother, Bryson and Dewayne. Bubba taught her to walk by herself this week. She took off the first day he was here and she taught him to say more words. They are soooo sweet together. They danced, hugged, and played so nicely. Bless their little hearts. I will be so happy when Des and I can go home to Texas and be with Bryson all the time.
Medically she is doing fine, just the same issues we've had for quite some time now. She still don't want to eat anything because she knows it will make her reflux and have heart burn. We have had a sinus/allergy type cold this past week but no fevers and still feeling good overall. She's looking good, gaining weight and growing. Finally had to buy her some new shoes!! She's got the tiniest, cutest little feet I've ever seen....
Please continue to keep us in your thoughts and prayers and our friends Caleb and Justin who are in the hospital not doing so wonderful.
Thank you for your continued support,
C~
Monday, February 20, 2006 11:56 AM CST Destiny is doing alright...still out of the hospital anyway, so thats good. She's just still not tolerating eating so I am getting more and more concerned about that.
Good news though is her EBV is down to 11,000 so the treatment we are doing is working. We were able to go up on her tube feeds to an ounce an hour, her ostomy output went up some but not horribly.
Developementally she is all grown up these days... She is putting sentences together and repeats everything she hears. My favorite is the shrug of the shoulders and the "Oh well"... It cracks me up!
I still haven't gotten her to turn loose and walk by herself yet but we are working on it. It's really harder to work on now because she is on the 24 hour feeds and vented all the time. But thats it for now. We just ask that you continue to hold her and all her little transplant friends in your thoughts and prayers. Thank you!
C~
Wednesday, February 15, 2006 5:46 AM CST We made it back out of the hospital on Friday, Feb.10,2006. It took her a while to get off the oxygen. And we did some more tests while we were in and the Docs seem to think she probably aspirated because her reflux is so bad. The whole time we were inpatient she would not eat anything. Since we've been back home and she feels better she has tried a couple of things and gotten sick a time or two, but over all doing better I think. I don't know, that aspiration stuff is terrifying!!! We did get a pulse sox machine, so I can watch her oxygen saturations as well.
Oh and we are treating her EBV now her level jumped up to 62,000. So now she is on IVIG every other week and ganciclovir 2x a day. The last level we got before discharge was down to 36,000. Praise God!!
Keep her in your prayers and all of our other friends that are in the hospital right now fighting to get out.
Alli, Ian, Nicholas, Caleb, Aiden, Aubrey, and Karis to name a few!!!:(
Thanks for your support.
Monday, January 30, 2006 9:47 PM CST Well I hope this update will go through, I've been having a horrible time getting updates posted.
To catch everyone up Destiny was admitted into the hospital Jan. 10,2006 for what was supposed to be just the day for a G/J tube placement... That turned into 16 days in-patient with pancreatitsis, then we had to go to a larger G/J tube because the first one was not draining her belly. On the 13th of Jan. she went to the O.R. for and EGD (scope thru the esophagus) and a scope of the bowell. Her bowell looked great but her grafted part of the stomach had some bleeding in it. No one knows why. The biopsy showed scattered EBV cells. So we checked an EBV/PCR level and it is up from the last one at 49,000 but the Docs didn't feel that was high enough to treat at this time because we're making some changes with her steroid doseage. Anyway we got discharged on Thurs. Jan.26th with low grade temps. and a new cough. On Sat.night we came back to the E.R. with the cough worsening and fevers. Her chest xray showed pnemonia in both lungs and her oxygen saturations were low and she required Oxygen. So we are back on 7North. She is on antibiotics, and getting breathing treatments every 6 hours. She seems to be better but still really worrying me to a very old age!!!!
I hope you will continue to hold her in your thoughts and prayers. Thanks for your support...
C~
Thursday, December 29, 2005 10:08 PM CST We hope everyone had a wonderful Christmas.
Destiny and I was able to go to Texas and spend some time with family. It was soooo wonderful seeing everyone and the summer like weather was a great change from the Pittsburgh cold! Destiny did well overall. We did have to go to Dallas Children's Hospital for a broviac repair on Christmas Eve. She didn't like the plane ride too much, she vomitted on the way down there then screamed with her ears and head on the way back.
We were able to visit the First Baptist Church of Cason while in Texas which was a wonderful experience. This small church has done so many Big things for us and it was just wonderful to finally get to meet the people behind the blessings!
Our family had a wonderful time with Destiny and she ate all the attetion up. Loved being with her brother! Got attached to her Memaw and really latched on to my Daddy (Papaw). She never knew she had sooo much family!
We really enjoyed everyone!
I want to send out a special thanks to Georgia and Dave and FBC of Cason for making this magnificent trip financially possible! God bless you all, I am so greatful to have you in our lives.
As always...prayers for our donors families!
Happy Holidays to you all!!!!
C~
Thursday, November 17, 2005 10:44 PM CST Well I got alittle more information about the syndrome that Destiny has recently been diagnosed with. I found out that her father and I both have to be a carrier of the traits that can make the symptoms present. Again something extremely RARE!!! Just another way my little Destiny is sooo very unique! We will be doing more genetic testing to be certain this is what she has. But the only treatment is steroids of course... So she will definately be on some form of steroids the rest of her life. I did also find out that sometimes the symptoms can go away! So that's hopefull... We can pray!
Other than that she's been doing ok. She has had alot of heartburn and reflux lately so we went in for an esophagram last week which I couldn't tell much about it at all because she was vomitting through the whole thing. Dr.Sindhi looked at it today in clinic and said it looked basically the same as the last one. A large dilated space then a small narrowing right before the stomach. He called the pedi.surg that did her esophagill surgury and we are scheduled to see him next week. I guess Dr.Kain will decide then whether or not she needs another dilatation. I hope not but if it will stop the heartburn and reflux then we need to do it. There's no sense in her being uncomfortable when she wants to eat! Bless her little bones.
On a good note!!! She is gaining weight and getting taller too.... She's now up to 11kg and 76cm tall. When we got discharged back in June she was only 8.9kg and 72cm. So I am tickled about that! She is turning into alittle onory thing though, she's learned how to through a 3 year old tantrum! And I just think where did my sweet,loveable, never acts out, precious angel go?!!? But it makes me laugh because finally after all this time she acts like a normal kid her age! LOL
Thank you for your continued support and prayers. You are greatly appreciated!
C~
Saturday, November 5, 2005 12:41 AM CST Well I have some news to report... For those of you that remember I had to take Destiny to Endocrinology due to low temperatures and they ran alot of blood tests. On Thursday the Doctor that we seen called me on the phone and proceeded to diagnose Destiny with yet another syndrome... It is called Allgrove Syndrome, the symptoms she has had for this syndrome is the hypothermia, achalashia of the esophagus, a high level on her TCH(courtisone), and no tears when she cries. I have looked it up on the internet and will include the website for those of you that would like to read more about it. Unfortunately there's nothing we can do about this new syndrome... The treatment is steroids which she is already on a significant amount but her TCH is still high... There is more tests they can run and do DNA testing to say for sure this is what she has. It is also genetic like her first diagnosed syndrome. I have been very upset about this.. The part about this diagnosis that scares me so badly is they say she could have mental detoriation over time.. I can't see how she can be soooo smart now and have that kind of problems later in life.
We desperately need your prayers and support at this time. I will post more as I know more about this.
The link is
http://www.emedicine.com/ped/topic71.htm
Thursday, October 20, 2005 11:29 PM CDT Thursday (10/13)we had a bad experience. Destiny got a slight fever then all of a sudden went to screaming and holding her head, telling me "mommy hurts" and crying like crazy. Scarred me to death!!! I've been thinking for a couple of weeks something was brewing because every so often she would have a little temp and just give those subtle hints that something just wasn't right. We ended up calling an ambulance after she started vomiting every where and I couldn't get her to calm down at all. We were in the ambulance on the way to the hospital when she raised her head up and said "all better"... We drew blood cultures, urine cultures, stool cultures, and got a chest x-ray. Came back home for a couple of hours to get some rest I guess because when we got up she spiked another fever. We got admitted on Friday and had positive cultures from her line. We started antibiotics and THANKFULLY cleared the line and got discharged on Wednesday (10/19). We are back at the house and she is back to herself again!! We have to finish the run of antibiotics and hopefully stay away from that hospital. This last stretch we had was the longest stretch since birth so to go in about killed me.... I'm just so grateful it was a short stay!
Please continue to hold my sweet Des in your prayers!
Thank you...
C~
Sunday, September 25, 2005 9:37 PM CDT Hello to everyone.. Sorry it's been so long... Destiny is doing remarkable. We still have our long term issues to deal with, (high ostomy output) but other than that her progress is amazing. I'm so proud of her! Kinda makes me scarred to rejoice in the blessing because as we all know everything can change in an instant. We'll just pray that if there are any changes it will be for the good!! Do I hear an "AMEN"...LOL
I am going to try a new way of posting pictures soon so hopefully I can do it.. We'll see!!
Thanks for your support!
C~
Sunday, September 11, 2005 10:01 PM CDT Destiny is still doing fine. We had our endocrine appt. last week on Thursday and basically they are just gonna run some lab work to check her thyroid and see if there is any reason for her low temperatures and sweats. I will post as soon I hear something back from them. As for clinic it went well too. We are gonna start some octreatide to see if it will help with her high outputs. I just don't get it.. It was getting better and now its bad again.
All in all she is doing wonderful, she feels good and she's acting good. She's doing her best to start walking. I'm hoping and praying it won't be too much longer!!
Thanks for the continued support!
C~
Sunday, August 28, 2005 1:27 PM CDT WooHoo... We had a blast at the Wiggles. It was awesome... Destiny danced the whole show!! Meeting them before the show was great and the look on Destiny's face to see the Wiggles in person was to die for!!! We had the best seats in the house and took lots of pictures, so check back; I'll try to get them on her site soon!
A special thanks to Reesa for contributing her time to arrange getting us tickets.. I cannot thank you enough!! Thank You!! Thank You!! Thank You!!
Sunday, August 28, 2005 1:25 PM CDT woohoo
Tuesday, August 23, 2005 11:02 PM CDT I am very happy to report Destiny is doing really good. We have gotten her kidney and liver functions back down to great numbers. She needed some more fluids. The only thing now is her ostomy output took a jump in the wrong direction. We went in for a scope and biopsy this morning and it looked great but of course we have to wait for the biopsy results to come back.
Her B.E.S.T. doc is very pleased with her progress. He is wonderful with her and she just adores him... LOL She loves going to his office because the girls there show her so much attention and they keep tootsie rolls too!
Now for some very exciting news!!!!
Destiny is going to get to go see the Wiggles this saturday!!! The Ronald McDonald House was able to get us tickets. And we even get to meet them backstage before the show!!! She is just ecstatic about this, she loves the Wiggles very much! And I must say I am very excited to take her and be able to see her face when she sees them in person... I'll probally cry...LOL I will take lots of pictures too so hopefully we can get them onto her website for all of you to see!
That's it for now. Pray she stays well and keeps doing so good! Thank you all for the support you've shown us! God bless,
C~
Monday, August 15, 2005 11:12 PM CDT Wow.. Thanks for all the birthday blessings from everyone.
Destiny had a blast at her party. She loved pin the tail on the donkey! It was hysterical... And she has become mobile!!! She now crawl-scoots and is everywhere!!
A big thanks to everyone that was able to come and also the wonderful gifts and cards that she received in the mail! We have alot of precious friends out there and I am truly greatful for each of you...
Medically she had labs today and I wasn't too happy with results. Her kidney and liver functions were both elevated and her FK was high too... I'm worrying about her temperature she has been running really low! Isn't that weird?! We have an appt. with endricine next month, hopefully they will have some reasoning for that. Today we increased her maintnance fluids to way too much, in my opinion... I just really hope we don't end up in the dreaded Dr.George's House!!
Other than that she is happy and doing good! Thank you for all your support and prayers.
C~
Monday, August 8, 2005 6:30 PM CDT Look at these gorgeous new birthday pictures we just had made. Destiny will be turning 3 years old on the 11th!!! A day we were never guranteed... Of course I always believed in her and the power of God to bring her through all the hard times. There was many days of alot of fear. I am just so releived and excited to see how well she's doing right now.
Yes we are still having the reflux but it doesn't seem to be making her real sicky anymore and she's not sounding so congested now... Hopefully it is going away!!!
Keep the prayers fresh for without all of you and your support I know we couldn't have made it this far!
Also yesterday would have been her kidney donors birthday, please say a comforting prayer for her family as well!
Thanks,
C~
Friday, August 5, 2005 11:38 PM CDT Destiny's upper gi was done on monday and showed a significant amount of reflux. Her esophagus seemed to empty alot better than the last esophagram but as soon as it hit the stomach she refluxed it right back into the esophagus. Even with putting the gastroview in thru the gtube it refluxed right back into the esophagus. The only suggestion I got from the doc is to keep her head up at night... I hope there is more of a plan than that when we go to clinic on thursday......
Please say extra prayers for her!
Thank you,
C~
Friday, July 29, 2005 11:04 PM CDT Hey guys, so sorry about the lack of updates.
We're doing fairly well. Destiny is going to have to have an upper gi with a small bowel follow through next week or the following. On the last update I talked about a cough and congestion, well it has persist on and now seems to be more of a reflux and/or esophagil issue. So with this test we will be able to tell more about what is going on. Also we are still venting her belly every night and it just seems her stomach is not emptying properly, again this test will show us that too.
Other than that she is doing wonderful. She has gained weight again and ostomy output is better than ever.
I am still taking her to the B.E.S.T. doctor and we just love him. She has progressed so much in so many different ways since she's been getting balanced at least once a week. I even had him balance me and let me tell you it made a wonderful difference in the way I was feeling also.
Thanks for the prayers and support!
A special THANKS to Lisa, Justin, Cindy, Makenzie, Traci, Marta, Bill, Roxanne, Olivia, Misty, and Emily for a wonderful reunion dinner thursday evening... It is so great to see all of us out and doing good! May God continue to keep us all healthy!!!
C~
Saturday, July 16, 2005 10:38 PM CDT Hi everyone.. Just wanted to let you all know Destiny is still doing fairly well. She has developed some kind of cold or sinus drainage making her sneeze and now cough a bit. She acts like she feels fine so I'll just be watching her closely... as usual!!
Her scope and biopsy from last week was good with no rejection, just a few allergy cells. Her output is jumping around alot still so I don't know what to think about that. But all in all she's doing great... As long as she is able to stay out of the hospital I know she is getting better. Her whole personality and confidence seems so much better. She works so hard to crawl... she hasn't been able to do it again yet but she sure has the want to! And loves for me to hold her hands to let her walk. She looks like the nutcracker when she walks!! It's sooo cute!
Well keep up the prayers and thanks for all you do! God bless,
C~
Sunday, July 10, 2005 12:35 AM CDT Hello everyone...
Des is doing pretty good. She is growing up on me and just amazes me more and more everyday! She is such a joy to my life.
We were able to spend alittle time with her little friend Olivia, yesterday. And Olivia looks wonderful and is doing great after her second multiveseral transplant. She is a miracle too.
Destiny will be going for a scope and biopsy next tuesday which is a relief because her ostomy output has jumped back up over the last couple of days. Pray for good results from that and pray that her output goes back down. It never has been a satisfactory amount but it was improving! We're along way from getting off of TPN and still on a masive amount of fluids, so we are still in need of lots of prayers. But are doing well out side of the hospital.
Thank you all for your continued support!
C~
Wednesday, July 6, 2005 11:01 PM CDT I hope everyone had a wonderful holiday....
Destiny is doing great. She had a blast watching the fireworks. She holared "again.. again..". It was the best time! Now Bryson on the other hand was not happy to sit still while we waited for the fireworks to start, then when they did start he sat very still mesmerized in a trance until he was sound asleep....LOL He had a good birthday party, and smashed his cake just like he was supposed to do. It was great to see him. Destiny and I were very upset to see him leave. If Des keeps doing as good as she is now I'm gonna get Bryson back up here to stay some time with us. Des and I both need him here with us.
Well that's about it for now. Thanks for checking in on us!
C~
Thursday, June 30, 2005 10:53 PM CDT Destiny is doing very well... She has been to see our B.E.S.T. Dr. twice now. She really seems to like him until he wants her to lay down so he can balance her...LOL It's a very simple non-invasive procedure and I can already tell a difference in her mobility and attitude. It's very interesting and exciting. Really hoping it will help with her output and esophagus and any other problems that she's ever had. Transplant clinic today went well too. We are now down to everyother week clinics and weekly labs.
That's about it for now, I'm just really tired and stay busy all the time doing our daily routine of meds and our play time... Thanks for your continued support.
C~
Sunday, June 26, 2005 1:02 AM CDT ***NEW PICTURES***
Things are still going good for Destiny...
Her scope looked great, and I'm assuming the biopsy was good too because no one ever called me to say otherwise. We had clinic thursday and don't have to go back until next thursday and hopefully won't have to do another scope for a month... She has had a couple of episodes with reflux or food getting stuck in her esophagus this weekend. Which as you all know, that makes me a nervous wreck.
Her brother will be here next weekend for his first birthday and we are so excited about that. I'm just hoping and praying Destiny will continue to cooperate and stay out of the hospital.
I was able to make her an appoitment with a B.E.S.T doctor for next week... It's something I've been wanting to do for a long time, and hoping this approach will be beneficial for her. Its like alternative medicine, hands on... massage, balancing type practice!! I don't know a whole lot about it but have heard wonderful stories about it and am very eager to find out more. I will be sure to update on the results of that visit.
Thanks for your continued support and prayers....
C~
Wednesday, June 22, 2005 10:58 PM CDT First of all... Thank you all for your support you've showed Louie's family during this time! And for the love and support you show us so frequently!!
Destiny is doing great today! Monday she wasn't feeling quite right and had me worried but Tuesday she was back to herself. She is getting so fat.. A friend of ours came into to town and suggested I change the pictures on her site because she dont look like that no more!! So soon I will be getting new pictures out for all to see my little junky monkey!!LOL
We have scope and biopsy tommorow. We went to renal clinic today and got some wonderful news when they dipped her urine... Just a TRACE of protein in her urine!!! We haven't seen that in forever!!! Her belly seems to be getting better also. She has slept throught the night for the past two nights, Thank you Jesus! And thankfully her stoma output is down, not way down like we'd like it but better!
Well I'll update again soon...
Thank you for checking on us!!! God bless...
C~
Tuesday, June 14, 2005 2:29 PM CDT This update is IN LOVING MEMORY of our precious angel
Louis Ryland Morris
Feb. 17, 2001 - June 12,2005
Louie has a link from this page to his site.. please visit his site and offer my best friend, Georgia Taylor, support in this time of extreme grief.
Louie went to join God in heaven sunday morning unexpectedly. It has taken us all by suprise and it has filled our lives with a big hole. It is so hard to beleive that its almost like a bad nightmare and we will wake up to his smile and laugh... He has touched so many lives in his short 4 years here. He has overcome many obstacles that no one could have imagined he could and now out of the clear blue he is taken from us, to fullfill God's will... And his memories will forever live in our hearts, and his Mommy and family will be in our thoughts and prayers always!
Thanks for your support during this time...
C~
Friday, June 10, 2005 2:23 AM CDT WOOOHOOO..... Outpatient again!!!
Destiny started feeling better and the reflux is better. We put her back on her IV protonix that she was on for "ever" it seems and we took her off right before we got discharged last time but apparently she really likes this medicine! Her belly still has moments of not emptying properly. But thank the Lord.. she has not been having any problems with food getting stuck in her esophagus. We DID NOT go through with the dilatation because the stricture is not causing her any problems. Turns out the main reason they wanted to do it is so they could do an upper scope and look at the top of her graft to make sure there was no rejection there because of the fevers and vomitting. But she's better so why put her through all that?
She feels really good and that makes me feel good! She just jabbers and sings... It's so funny. And she loves being at "home". She told Dr.Kyle on tuesday "house".. and pointed to the door. He said "ok.. go"!! So we did...
Please continue to pray for her to keep a good balance.. She has been doing better with her output but we all know how fast that can change!!
I would also like to ask you to pray for our little friend Olivia.. She just recieved her second multivesiral transplant and so far is doing wonderful but needs our support!
Thank you all for everything you do!
C~
Thursday, June 2, 2005 10:29 PM CDT Well here it is thursday and no dilatation... Someone failed to put the order in for it so we get to stay another week because they only have general anastecia in Interventioal Radiology on Thursdays. I'm ok with waiting because I would really like to discuss it with Dr.George anyway, but I'm very upset we have to stay inpatient because of someone's ignorance! Destiny is feeling really good today, laughing and acting goofy like she was feeling when we were outpatient. Which is always a pleasure to see! She is still having reflux and has to have her gtube vented all the time. The reflux has started and gotten worse since the last dilatation so thats one concern I have to talk to Dr.George about. And it seems her stomach is still not empting right. I dont know what to think about that, it is very concerning though! We've increased her reglan and I've been refussing her levsin. Her output is still high so it's really got me boggled. Her kidney functions have gotten back to beautiful numbers. I was informed she is still loosing protein. Not near as much as before but still there. Pancreatisis is better... Scope and biopsy was good!
So we're just hanging out and hanging on!! Praying for some relief!!!
Thanks for your continued support and prayers...
Friday, May 27, 2005 10:06 PM CDT Destiny is finally starting to feel better now... We've had a pretty rough week. Wednesday morning we were awaken to be transferred to the PICU because her sodium had dropped way too low to not be monitored very closely... So they started her on some replacements and got her levels back up slowly, gave her a couple more antibiotics because they still don't know where the fevers and vomitting came from. She did have a positive urine culture but because of her vessicostomy they really don't beleive it to be true. A little later that morning her pressures started dropping and ended up on pressures meds to get them back up, but it only took her a couple of hours and she was off of them again. Thank God for that... Wednesday night she woke up and actually was ready to sit up and wanted to eat so they let her eat a little bit but she got abit sicky from it. Then thursday she was a whole new child again, felt so much better she sat up in her crib and talked and waved to everyone passing by. So we were transferred back up to the floor again. She's still having some issues eating. So today we went down for an esophagram and it basically showed the same thing the last one did except this time when we put her on her left side it emptied into the stomach nicely, just like before but when we put her back on her back it refluxed back into her esophagus. It seems to me her stomach isn't emptying quite like it should. But she has dumped so much today from her ostomy and a bunch of urine too, I just don't know what to think at this point. I'm almost certain they'll want to do another dilatation on her esophagus before they let us out again. And they already mentioned doing a scope and biopsy on tuesday, so we'll see what that shows.
And that's about it for now... Just hoping and a praying she can get all better again and get back out of here before we become a permanent fixture again!!!
Thanks for your continued support!
C~
Tuesday, May 24, 2005 10:04 PM CDT Less than 2 weeks and we are back in the hospital... I'm so not happy!!!!:(
Des started acting alittle punky saturday and again alittle more on sunday, then monday morning she woke up very fussy and went to throwing up everywhere and had a low grade temp. So I called the transplant coordinator and here we go to the Emergency Room... My baby was extremely miserable and not herself at all but all they did was draw cultures and sent us back home... They seemed to think she had gotten a virus or somekind of bug and said if her cultures grew anything they would let me know to bring her back... Well they didn't have time for all that because we got to the Ronald McDonald House and she continued to vomit and feel bad and then by night she spiked a big fever and I called them again, gave her tylenol and waited an hour and it hadn't budged so I brought her back. She kept a fever all night and most of this morning. We started antibiotics and finally her fever came down but her urine output went way down and she is vomitting old blood and it is coming out of her gtube... She hasn't had anything to eat or drink since sunday night so her ostomy output is down but it almost seems that nothing is moving that way because there has been no sign of any blood in her stool.
Tonight she continues to be miserable she has slept since sunday night except when she is up vomitting... I wish we knew what was going on. But what I wish more than anything is for her to be well and get her back out of here and back home where she is happy!!!
I will update as I know more. In the meantime Please pray for her healing and knowledge for the Dr.s to find the problem and make my baby girl all better again!!!
As always... Thank you,
C~
Sunday, May 22, 2005 11:10 PM CDT Im am proud to report Destiny is still doing good. We had two good clinic appointments last week and scope and biopsy was good. Very little activities on her biopsy so no changes in her immunosuppressants. Her EBV level did go up alittle though, it was way down so I thought we were gonna be good to go on that... Hopefully it won't get real high again like it was. She worked really hard at her physical therapy session too. She is doing her best to get mobile.
We did have to be admitted on friday briefly for albumin but was discharged as soon as it was finished running.
Want to say a special "thank you" to Myles' family for the thoughtful gift that was sent to us! And to Lisa and Justin for keeping us company and always here for us! And to all the rest of our precious friends.. your love, support, and encouragement mean so very much to us! We love you all dearly!
May blessings be upon us all!!!
C~
Tuesday, May 17, 2005 10:55 PM CDT Well we have managed to stay out... so far so good!!! Destiny has done so good she has laughed more, played more, and talked more this past week then she has in her whole life. Bless her heart she is becoming a typical two/almost three year old... She's about drove me insane though wanting to eat all the time, now that there's food available anytime instead of just her "tray time"!! She's in heaven.. LOL...
We had labs and clinic on Monday and all was great, so no changes in her meds or fluids. Then today we had scope and biopsy. That looked great but of course we will wait for biopsy results. We go back to clinic on Thursday and have labs then too. Then Friday we go to physical therapy.. So as you can see we have a very busy schedule but it's worth it just to be out of that hospital!
Today she's kinda got me worried a little though.. she's just not as chipper as she has been being. I hope it passes and she's back to her silly little self tomorrow! I'm thinking she's got allergies making her feel yucky.
Well please continue to pray for us. Your support and friendship is greatly appreciated.
Hugs,
C~
Friday, May 13, 2005 0:49 AM CDT I HAVE WONDERFUL NEWS........... WE FINALLY GOT DISCHARGED FROM THE HOSPITAL AFTER A STRETCH OF ALMOST 10 MONTHS!!!!!
I am so excited and Destiny is too.. She's done wonderful so far. She wasn't too sure about taking a bath in a real tub, it's been so long since she's sat in water she didn't know if it was ok or not. I had to get her out real fast and show her it was fun! And she woke up once in the night scared but calmed easily and went right back to sleep! Makes it even funner that her Bubba is here and Meme too. She has been watching Bryson move around so much that she is trying more things. She wants to crawl so bad, she just lost so much mobility this past year, it's sad. But we're gonna be going to out-patient physical therapy so hopfully she'll get stronger and stronger. Her pressures have been so good, she has not gotten any pressure meds at all since we've been out besides the clonodine patch she has on. I am so proud of her!!!
That's it for tonight just wanted everyone to know she is doing very well and we're FREE....And our visit with Bryson and Helen has been going great. Des loves her brother and Meme.... Please continue to pray for her. Prayers were heard and prayers have been answered. Thank you all for the continued support!
Friday, May 6, 2005 11:03 PM CDT Well Destiny had her dilatation yesterday and she did well. They said it opened up easily and hopefully she won't need to be dialated again for a long long time...
She was very ill feeling most of the day yesterday but was able to eat some ice cream and pudding. She had a fever and was very itchy and red, I guess from the anastecia, we gave her benedryl and she was better. But then today several different times she got all red and blotchy so we gave her benedryl again tonight.. She felt much better today but still not completely herself.
Her FK level went way high for the last two days even with holding and redosing but ... THANK YOU JESUS ... her kidney just kept right on working!!! I am so tickled about the turn around she has made with her kidney functions. Her creatin is down to .4 and her BUN is 20! That's so awesome.
I recieved a very touching letter from Destiny's kidney donors family this week! It made me really stop to think. So many people have made the choice to be organ donors or to donate organs of their loved ones and this choice has made a miracle in someone else's life! But yet all the time babies, kids, and adults of all ages are dying waiting for organs.... Please talk to your families and make the choice to be an organ donor, to give the gift of life... This family has made the most unselfish decision any one could make in a very difficult time, and because of them Destiny is here today..not relying on dialysis and able to maintain her electrolytes beautifully. Our donor families need to feel our gratitude... May you all please lift them in prayer and put a blanket of love around them today and always!!
God bless you and thank you so much for your support.
Hugs to you all from us both.
Christie and Destiny~
Thursday, May 5, 2005 0:02 AM CDT In the morning Destiny is scheduled to go for the dilatation and I am a nervous wreck.... Around Monday is when I decided to go through with it but the closer it gets the more I'm second guessing my decision. She has been so happy these last few days.. She just laughs and laughs and acts goofy. It's so funny!! She's been working really hard on her words. We're trying to teach her to close her lips when she says words like puppy. She's a stinker! And she is very excited about Bubba coming this weekend to stay a week with us. Thanks to Dewayne's step mom Helen! We really appreciate you bringing Bryson up here.
Well I will post more to let you know how the dilatation went. Please say lots of prayers that it goes smoothly with no problems!! Thank you.
C~
Saturday, April 30, 2005 11:40 AM CDT Hello everyone... Sorry it has taken me so long to update. No good excuse, just didn't really want to report that we are STILL in the hospital. She's been doing fine other than... high ostomy output, replacememt fluids, some pressure issues still, and a couple of episodes of food getting stuck in her esophagus. For those of you that know... this is not a good thing. As a matter of fact it is very disturbing!
She is scheduled for an esophagil dilatation on Thursday of next week. I'm still praying for God to tell me if this is the right thing to do. Your prayers could help too...
Thanks for continuing to check in on us and offer your support. I'll keep you posted better.. Again sorry to keep you all wondering.
Wednesday, April 20, 2005 10:32 PM CDT PRAISE THE LORD ..... Have I got some wonderful news!!!
God has blessed us so graciously. Before I tell you the miracle, I must say "THANK YOU" to all of you that has continued to hold Destiny in your thoughts and prayers.
Your support and the strength God gives us is the only way we could have made it to where we are today.
Destiny has been doing great. HER KIDNEY IS FUNCTIONING WONDERFULLY!!! Her creatin is NORMAL for the first time in a very long time!! She still has some protein in her urine but I am so excited about all the pee-pee... We've taught her to do alittle dance everytime we have a big diaper!! It's just amazing, it's like the dam broke open and here it came!
Her pressures have still been high but getting better. Not requiring IV meds for it anyway.
She went back on Citagam for the elevated EBV levels even though this week it is down to 35,000 from 140,00. So that's a miracle too.
Today was the day of the care conference but I didn't get to go because the doctors got together first and discussed a bunch of things but got called to the O.R. to do a transplant so Bev came to let me know what the plan is... And it sounds good to me! They want to change most of Destiny's IV meds over to oral and watch and see how she does over the next week. If all goes well, get us discharged the following week to the Pittsburgh area. So that means our apt. at the Ronald McDonald House. Then after a couple of weeks outpatient here with no problems get us transferred back to Texas!!!! I don't want to get too excited of course and actually I know better.. but it sure would be nice to get home to our family and friends.
So with all of ya'lls help with the prayers maybe we can get home-home in time to have Bryson's first birthday party in TEXAS!! And have a big ole' welcome home party for me and Destiny!! (Pepaw... fire up the grill.....lol) What a wonderful thought!
Thanks again and bless you all!
C~
Thursday, April 14, 2005 0:52 AM CDT Well have I got some great news?!! In my last update I spoke about Destiny's creatin going up, up, up.... Well on Monday it started going back down again and her urine output has been increasing since!!!! I am very excited about this, I'm always scared to get my hopes up but for 3 days it's improved each day!!!!
We've been going out on pass everyday. We went to the Pittsburgh Zoo and Aquariam on Sunday with our friends Georgia, Dave, Louie, and little Ayden. We had a pretty good time the kids were whipped out by the time we got to the end... Destiny's favorites were the monkeys and the fishies! I love to hear her make a monkey sound and do the fishie lips... it's hysterical!!
Then Monday and Tuesday we just went and hung out at our apt. at the Ronald McDonald House. Which was so nice, except for Des holaring for food and snacks the whole time and we don't really have any groceries over there but she knows what belongs in the kitchen... Little piggy!
Wednesday we journeyed over to see Aunt Gigi, Louie, and Ayden at their house for a short visit then went on over to the mall so we could go to the pet shop and see the fishies, puppies, and kitties... She loves animals, I'd love to get her alittle puppy one of these days. Then when we got back to the hospital, Kaylee a volunteer pet therapy dog, came by to see her and she had a big time sitting in the floor with her. I have a picture I will try to get posted later today of that visit.
As for us getting outpatient we're running into problems because for one she is still having high blood pressures and requireing iv anti hypertensives which is not safe to give outpatient, and two.. we have not been able to find a home care company that will take Texas Medicaid anymore for some reason or another. The home care company we had last time we were outpatient was set up through the Children's Free Care Program, the only problem this time is she is on alot more medicines now and more iv stuff which is more expensive of course. But we're not gonna give up, she is doing so well other than the pressures, I'd hate to think we'd have to stay in here because of the medicaid situation.
If any of you know of a way I can get a dinamap or digital blood pressure monitor in a "very little" size that would also help us out alot! To do manual pressures with as many meds. as she is on is pretty terrifying...Our discharge facilitator tried to come up with something but was unsuccessfull.
That's it for now.. Please continue the prayers for Destiny to keep doing better and better and hopfully we can get these pressures under control too!! Nothing is too big or too small for Our God... Thanks for your continued support.
C~
Saturday, April 9, 2005 9:30 AM CDT Well I don't really have alot to update. We were allowed to go out on pass for 3 days in a row. That was nice and the weather was nice too. Destiny had a good time, now when I say "do you want to go bye bye", she replies "shop"!!! We went broke on our days away from the hospital but thats ok, we enjoyed it.
As for the care conference... We didn't have one, apparently a few of the docs spoke and what they want to do is get us outpatient for a while and see how things go in a different environment. And make long term plans later. Again it has been mentioned that she may need to be re-transplanted. I just hope and pray things get better and she finds a balance. I can't imagine going through another transplant...
Yesterday her output from her ostomy decreased quite a bit but she started throwing up several times up into the night. Her creatin is getting higher and higher. More so than before her kidney transplant. That can make you feel very ill.
We just need lots and lots of prayers from you all. I hope we can get out of here for a long while would be great but I've learned not to get my hopes up too quickly!
Thanks for your continued support through these very trying times...
C~
Tuesday, April 5, 2005 11:30 PM CDT My fears have become my reality... Destiny's EBV level came back today at 141,000; which is up quite abit more than what it was last. Her kidney function is poor, she's dumping from her stoma, and she's very puffy from third spacing fluids, and she's eating like crazy because of the iv steroids...
All the doctors are supposed to get together and we'll have a care conference this week to decide what to do next. Renal has been talking about placing another catherter for dialysis. Kidney transplant docs have been going back and forth with deciding to do a kidney biopsy. Liver docs are managing EBV teatment and rejection. She'll be scoped again on thursday. We finally started lovenox (blood thinner) shots again to work on the clot. There's been talk about relisting her for everything and getting a whole new transplant. I really hope it is not coming to that...But the way things are looking this kidney is not gonna kick in and the iga isn't bowing down. I just learned that iga is excreted from the bowel so it may have been a problem that originated with the bowel. We've had problems with this bowel since transplant so that would make sense to me. But I don't know.... we'll see. I will update as soon as I know more.
Today we had a very enjoyable day together, despite the steroids she's been very cheerfull and happy as long as there is food around. She is talking sooooo much, it's so funny! I just love her so dearly! Please everyone lift her up in your prayers, I do know one thing... we can't do anything without Gods help!!!
Thanks,
C~
Friday, April 1, 2005 9:43 PM CST Once again my hopes of things turning around for us has been shot down.
Destiny had a scope and biopsy on thursday and it looked good but the biopsy showed mild rejection. So its back to prograf, iv steroids, toxicity to the kidney, and the fear of her EBV levels going up more and more. We just can't seem to catch a break. I was so hoping the rapa would be the answer to alot of our problems but I know the doctors will more then likely not try it again. Even though my thoughts of it are that she just kicked adnovirus and they lowered her rapa level because of the EBV with the thoughts of "we have a biopsy of no rejection" so lets see how low we can go.... I'm so aggrivated. And plus the last time she got adnovirus, they lowered her fk and when she kicked the virus she went straight into rejection for the first time since transplant. So I'm not totally sold on the fact that it was the switch to rapa. But her kidney functions were going down then started heading back up again so the thought of kidney rejection was already talked about but now they won't do a biopsy because they are already treating her for rejection unless of course they keep rising.
And on top of all this she is puffy with fluid. She's on and off oxygen throughout the day and night. One minute she needs extra fluids the next we're cutting them off. It's like running around in circles chasing your tail...
We are still not on any tube feeds, so it's 100% TPN and now we've added alittle lipids to give her more fats, and hope her triglycerites don't jump too high.
So as you can imagine life is very frustrating right now so we need lots and lots of prayers and support!!! Thank you...
Sincerely,
C~
Monday, March 28, 2005 10:36 PM CST Hope everyone had a wonderful Easter*
So sorry I erased the pictures but I'm working on getting them back with the help of my friend, Cindy! Thanks Cindy for helping me out here!
Well we got some bad news this weekend. Seems Destiny got EBV from her kidney donor. Her level is very high so she is now being treated with gancyclovir and cytogam which are both of the chemo family. It seems things will never get good enough to get this girl out of here. We have now been inpatient for 8 months... Lord, help us!!!
They repeated a scope and biopsy on friday and it looked good. The biopsy showed alittle inflamation probally from the recovering from adnovirus, but thankfully no adno and no rejection. Her rapa level has been running really low though so that is worrisome. Her BUN and creatin are climbing for some reason. They're wondering if she's not trying to reject the kidney since we made the switch to rapa. And on top of it all she's been feeling bad, throwing up, and having fevers ever so often.
So as you can see... we need our prayers warriors out there to really help us out! It's got to get better soon...
Thanks to all of you that continue to follow us.
May God smile on you today!
Tuesday, March 22, 2005 1:51 PM CST ***NEW PICTURES***
We have been doing ok. We've had to do alot of replacement fluids and bump up her TPN and stop her tube feeds because of the high output. She had her first scope and biopsy since we switched to Rapa and it looks good with no rejection. But the biopsy shows what appears to be adnovirus, we still have to wait for the stains to come back to say for sure. That would explain the horribly high output. As of today her kidney functions have improved. Thank you Jesus!! Let's just pray it keeps improving and she kicks this bug soon!!
She has been doing new things, like repeating everything she hears!!! Sometimes thats not a good thing! But most of the time it is very cute. And she knows the words to her favorite songs and sings along and dances!!! It's just amazing how fast she learns and how much she has grown into a little toddler. She is such a wonderful joy!
Thursday, March 17, 2005 10:06 PM CST I have the most complex little girl!!!
Destiny's skin biopsy showed that it is truly an IGA attacking her skin along with someother med. enduced mechanism. And the med that can cause this that she was on is now stopped and hopefully all will get better. Her skin has already started looking better day by day so I pray it continues and nothing else has to be done. There is a medicine treatment for it if we continue to have problems with it.
She had scope and biopsy of her bowel on tuesday this week and it looked good and biopsy results came back good so we are starting rapa tommorrow. This will be easier on her kidneys and Lord willing will help with knocking this stubborn IGA nephritis out so her kidneys can function properly.
She's still having large amounts out from her ostomy and we don't know why but it's increasing each day. What am I gonna do with this youngen... I'll just love her and pray more and more that this all gets better soon and we can enjoy a semi-normal life outside of this hospital! Please do help me with these prayers... Thank you all for continuing to check in on us.
C~
Sunday, March 13, 2005 9:53 PM CST Things are going pretty good with Des right now. We took a trip down to icu last week with respitory distress and needed some high flow oxygen but was able to come right back up the same night. For the last 3 days she's been completely off oxygen!! Even at night when she sleeps!!! Her output got better and finally her phosphurus became a normal level, so she was allowed to have some cheese again which made her a very happy baby. Until she started dumping again so she is being limited to how much she can have and that makes her one mad little girl. But to keep her level down and to keep her from dumping I will put up with her being mad at me. Her kidney functions got alittle better but they're no where near where they need to be. I became very depressed last week when one of the doctors told me he thinks the IGA nephritis has transferred over to the donor kidney. What that would mean for her??.. I'm really not sure and affraid to ask. We are supposed to switch her immunosuppressants from Prograf to Rapaimmune probally tomorrow because rapa is easier on the kidneys and we may add cellcept which is an immunosuppressant that they use to treat iga nephrosis. God willing..it will help! She also has blisters that have popped up in several places on her belly that they can't figure out what it is so they will be doing a skin biopsy tomorrow. Dermatology thinks that it might be iga related. I will update as soon as I know more about that.
Developementally and physically she is doing great and looking great. I'm hoping to be able to get her out on a pass to get her Easter pictures made and we have tickets to see Disney on Ice for this friday. I think she will enjoy that alot if we get to go. Keep your fingers crossed, she gets to experience that!
As always your prayers are needed and highly appreciated!
C~
Tuesday, March 8, 2005 5:28 PM CST Well here's the update...
Yesterday Destiny decided it wasn't the day to go to the O.R. She was desatting and needing lots of oxygen so it would not have been safe to take her under the condition she was in. She was becoming overloaded is why she was doing that because the day prior she became too dry. It is so hard to get this kidney perfussed without wetting her lungs. She's just so sensitive to fluids. And they had changed her tube feeds because her phosphurus was high and the new tube feeds were not the ones for her. It made her dump like crazy so that's why she became so dehydrated. As of Sunday she has not been on any feeds and the dumping has stopped except for when she tried to eat everything in sight! We're gonna go back on her normal feeds maybe tomorrow depending on how her phos. is.
Now today was the day for the O.R. She did well. They removed the vascath!!! And replaced her broviac to another double lumen but this one is alittle larger so hopefully it won't break like the last one did. They also carterized the g-tube site to get it to stop bleeding all the time. Let's pray this works.
Today her BUN and creatin had gone back up because after giving her diaretics yesterday to get the fluids off she is now dry again. Visious cycle!!
I'm being very hopefull that things will start getting better for her soon... Lord knows she needs a break!!!
Thanks for your support and prayers through all of this.
C~
Thursday, March 3, 2005 1:38 PM CST Well we've had some interesting and busy days since our last update. Let's just say "we have issues"!!!
Tuesday night was a nightmare... We had bleeding from the g-tube site, the vascath clamp broke, her broviac snapped, and she went from needing 1/2 liter of o2 to needing 2 liters. Lord help us!!!
She's been sleeping alot the last couple of days and this morning she has a fever and sounding weezy so we've started breathing treatments. Sent blood and nasal cultures, so we'll see what's going on.
We had to repair her broviac for the forth time since she's gotten it (less than 2 months ago). So monday she's supposed to go to the O.R. to get a new one and hopefully a single lumen. We don't have near the problems with a single that we've already had with this one. This is actually her first double lumen ever, and I don't like it at all.
Dialysis came last night to re-heplock her vascath and one port wouldn't even give a blood return so I'm hoping they will decide to just take it out also while she is in the O.R. But with the blood clot being at the tip of it she may have to have that done in Interventional Radiology so they can see if the clot begins to move. We are gonna have an ultra sound done today or tomorrow and probally an echo cardiogram to check the status of the clot and the lines.
I will update as soon as I know more.
Thanks for the continued support and prayers.... We definately need them!!
C~
Sunday, February 27, 2005 6:02 PM CST Well we had to say goodbye to Dewayne and Bryson today, which was heart breaking. They flew back to Texas today and we don't know for sure when we'll get to see them again. I miss Bryson so bad already, it was so wonderful to have him here and we got to bond again. Him and Destiny bonded too, they are so precious together. Bryson is so wild and Destiny is so calm. Like night and day.
What all is going on with Des?
She is alittle punky lately. Her phosphurus is very high so she is not allowed to have any cheese or chocalate!!! Which makes the days much longer. Trying to explain to a 2 year old she can't have her favorite thing in the world is exhausting but she is so good about it. She forgets she can't have it and asks several times throughout the day and when I remind her not yet... She just accepts it and moves on to something else. What a blessing it is to have such a wonderful and mature little lady by my side.
She is dumping alot again and loosing weight, so we increased her TPN today and added some extra fluids to try and get her back on track. She wants to eat and drink all the time so hopefully this will slow her down abit because again the more she eats and drinks... the more she dumps! What a vicious cycle!!
Her kidney is still not putting out like it should but that could be because her bowell is putting out too much... So again hopefully these extra fluids will help. There is still a large amount of protein in her urine but not as much as a week ago. They still want to keep the dialysis catheter in even though we have not needed to use it since Feb.6th... KNOCK ON WOOD!!! But the thought of plasma phoresis is in the air. Don't know if I spelled that right or not but it's not something I want to do, I do know that.
I just wish we could find that fine balance that Des needs to move on past all this.
So again I ask you to please continue the prayers for Destiny to get all better! Thank you so much, your support means so much to us, it's what helps get me through the day. God bless you all!
C~
Wednesday, February 23, 2005 1:48 PM CST ~NEW PICTURES~
Sorry I haven't been updating much. Destiny is doing ok. Still having issues but staying strong. Her kidney kicked in alittle better but still not great function. We are still unable to treat her with blood thinners for the clot because she continues to have blood in her urine from time to time. It appears she has a virus coming in to effect now. She's been dumping alot, so she was scoped on monday and the biopsy was beautiful. No signs of rejection or "activities".
Dewayne and Bryson came in on Feb.16th and will be staying here with us until the 27th. It has been so nice having them here. Bryson has gotten so big, as you can see in the picture he's the same size as Destiny. He's all over the place in the walker, where ever he wants to go.
"Wus" stayed here at the hospital with Destiny last night and it was not a good night for neither one of them. Des was up crying all night with what I think was a belly ache. She just wasn't acting herself and when I got here she was pushing on her belly and crying out. So we have her tube feeds off and her g-tube vented and she was able to rest alittle now. Bless her little heart, it's never easy for her.
Thanks for checking in on us and please continue to pray things will get better for our little Angel girl!
C~
Tuesday, February 15, 2005 1:31 PM CST ~HAPPY LATE VALENTINE'S DAY TO YOU ALL!!~
I am happy to report Destiny moved up to the floor on Sunday and is doing good. Her urine output is picking up and her creatin is going down. She is loosing lots of protein in her urine again which is worrying me to death. And the other thing that has me worried is this blood clot. They still haven't been able to start heparin back because she kept having bleeds from the biopsy so nothing is being done to treat the clot. I am about to freak out about it. It's very scarry because it is in a spot too close to her heart to even put a filter in to protect her. I'm hoping tomorrow they will start her heparin back up then switch her to lovenox (blood thinner) pretty soon. She hasn't been dialyzed in 9 days now... yippee!!! Maybe the hemo catheter can come out soon and hope and pray when it does the clot don't move.
We are looking forward to seeing Wus and Bubba tomorrow. They will be here with us until Sunday the 27th. How exciting and I am so ready to take a break away from the hospital and know someone is right beside Des! Eager to fix up the apt. at Ronald Mcdonald House and spend some time with my big fat boy!
Please continue the prayers for Des, we really appreciate all you do. Thanks.
~C
Friday, February 11, 2005 1:08 AM CST Feb.10,2005 Thursday
Talking about a turn around from the last update… Des is wide awake now and won’t go to sleep! She’s driving me insane…. Ha.Ha.
Feb.8,Tuesday she had a kidney biopsy to rule out rejection and to see if something else was going on that we did not know about. And an ultrasound of the clot, which is still there and it is pretty long.. Very scary! We had to stop the heparin to do the biopsy and have not been able to start it back yet. We did for a couple of hours last night and the doctors called and wanted it stopped again for some reason or another, then today they wanted it started again and then she started bleeding again from her kidney in her urine. So it is still off, which is worrying me to death because this clot could keep getting larger and larger. The biopsy results came back yesterday and it is not rejection, it showed there is definitely ATN (acute tubular necrosis) which means the kidney suffered some trauma from the surgery or could be a result of a lack of oxygen for a period of time while in the donor. Dr. Moritz (renal dr.) is very encouraged that it will improve soon. I just love him, he’s a wonderful doctor. Then yesterday Feb.9 Wednesday, Des went for a nuclear med scan also. They injected her with some dye and watched to see how the kidney filled up and released. It filled quickly which is excellent, means the flow is great but it released slowly, which is what you see with ATN. So we know that it’s ATN and should get better soon. Let’s pray!!
She is feeling a lot better with no more fevers or rash. She’s been eating like a little pig too and not dumping bad at all and her feeds are going good too! That’s exciting. She hasn’t been dialyzed since this past Sunday but I think she will need it again tomorrow, she is getting extremely puffy again and her weight took a big jump. All of her cultures came back negative so far except for one swab from her vessicostomy so they are changing her antibiotics around to treat that.
We now have a new mailing address… We got a 2 bedroom apt. at the Ronald McDonald House. Can't wait until Destiny can get discharged. The address and phone number is:
512 Shady Ave. # 43
Pittsburgh, Pa. 15206
(412) 362-3400 Apt. 43
I would like to Thank Cindy B., Cindy M., Lisa S., and Matt for all the help in getting us moved. If it wasn’t for friends like ya’ll I don’t know how I would’ve done it.Also sending out a big thanks to Beth and Cory for the package, Des is in heaven!!! For our friends Karen, Nathan, and Myles for the gift also. You are all very thoughtful and caring people. Thank you very much and may God bless you for being so wonderful to us!
May God bless all our friends and family, thanks for the continued support and prayers.
C~
Sunday, February 6, 2005 11:52 PM CST
Feb.4,2005 Friday
I know I got a few of you fired up with my last update, I’m sorry…. It was a difficult day for me and I just haven’t been having the best of outlooks on things. It does sound abit discouraging to hear something like “prayer don’t work..” but the pastor meant well. He just wanted me to realize that although we all have prayed so hard and so much it’s up to God to do the work, for me not to feel like I’ve not done a good enough job at praying or not to feel like I’m not being heard. He came back to see me the following day and we had a more lengthy discussion about it. I’m still feeling down and trying really hard to find my way back to some serenity. Please “do” continue to pray for us.
Destiny has been ok, not herself by no means. Still not making much urine and her kidney function levels are climbing and she continues to get puffier and puffier. So today Dr. Ellis decided to dialyze her. And she needed blood so they primed the system with blood instead of albumin and she did SO much better than before. Surprisingly her urine picked up a little bit after dialysis. Maybe her kidney just needed a little pressure taken off of it. Let’s hope!!!
Feb.5,2005 Saturday
Last night turned into a nightmare. Destiny started having some severe pain. She hadn’t really been taking anything for pain in a few days so I was surprised. She was up all night crying and whimpering. She is pushing and scratching at her incision sight and tried to pull her g-tube out so I’m really not sure what’s hurting her.. her belly or the incision so we gave her belly medicine and pain medicine and bless her heart she was still pretty miserable all night.
They are having a hard time getting her heparin drip where they want it. After dialysis her PTT (clotting factors) went way high, which means too much heparin so we stopped her drip and have been going back and forth, up and down, and all around. Another thing this morning her H and H (blood counts) were way low so they redrew them and they were truly low, so she got another transfusion today. There is no indication she is bleeding any where besides the pain and a high PTT so they did another ultra sound to make sure her kidney wasn’t bleeding and it appears to be ok, there is a small amount of fluid around it but they said that was there on the previous ultra sounds as well and normal for a fresh kidney transplant. So where is her blood going??? Very frightening…If it was just a little drop we could just say it was all the blood draws but it went from 9 & 28 to 5 & 16!!! She’s acts like she is completely miserable. Let’s pray she is feeling better tomorrow.
Feb.6,2005 Sunday
Well we have had another miserable day except today she has just been sleeping all day long. She stirs when we mess with her, whines and goes back to sleep. She is out of it. She is having low grade fevers now, all day.. Tylenol around the clock and its just not getting rid of them, they are hesitant about giving her motrin because of the heparin drip and a new kidney. There’s really no other indication that it’s an infection, her heart rate is normal, her pressures are good, but she is so sleepy and out of it. She keeps having a funny red rash come up on her upper legs and on her checks and neck. Makes me wonder about graft vs.host?the campath she was given in place of thimo during transplant?, but if its either of those two then what’s causing her to be in so much pain and so lethargic??? We went for a c-t scan of her head and chest at 4am this morning, to make sure there’s no bleeding anywhere. Thankfully there’s no signs of bleeding. Her head is normal but there is a pneumonia in her right lung. They can’t do a scan of her whole abdomen because they can’t give her contrast with a new kidney without causing it damage so we are going to avoid that as much as possible. She was dialyzed again today. We have sent cultures of everything possible so we just have to wait and see… And pray and pray!!!
I will update as soon as I can..
Thanks for checking in on us and for your continued support and prayers.
~C
Wednesday, February 2, 2005 11:27 PM CST Feb.2,2005 Wednesday
Please forgive me for not updating as frequently as I should. Things have not been easy by no means… We’re still in the PICU, and that makes it so hard to ever get a moment to get on the computer or to even give someone a call to let you all know how things are going.
Des is still not making a lot of urine, we’re just hoping it will kick in soon or she may end up having to be dialyzed again. She looks like she might just pop at any moment. We were able to get her off the high flow, she is now on a little o2. The big let down now is not only did she get a “sleepy” kidney she now has a blood clot behind her liver! Yesterday they decided to do an ultrasound to check and make sure the clot in her right leg hadn’t come back because of the swelling seems so bad and tight in the lower extremities. The results were.. the clot in the leg is cleared but looky there, a new one up by her liver….. Lord, help us!!! Is there ever a break for Des?????????? I am just so upset and angry, I’m just beside myself. Forgive me for being so frustrated. I know I should be jumping for joy because she got her kidney so quickly and of course I was until things started not being what they were supposed to be. I really don’t know how to feel at this minute.
All the prayers that have been prayed for Destiny by all of us… Why is God allowing such things to continue to happen to her…???? I don’t get it. And the pastor came by this morning and informed me that “prayer does not work…..God works…." So now of course I am beginning to question even more things.It wouldn't be so bad if I didn't fully believe that He is in control of all of this...
So tonight I am in need of lots of insight, support, and some encouragement, because I truely feel like I'm at my end.
Sunday, January 30, 2005 11:57 PM CST
Jan.30.2005 Sunday
Things aren’t going quite as great as we would hope them to be. Thursday night Des’s urine output slowed way down and as of now it hasn’t picked back up yet. They are just thinking it will within a few days but I am very concerned, myself. She has become very puffy again and having trouble breathing so she is on high flow oxygen. She was extibated before she left the O.R. and only on 2 liters of o2, talking, and wanting a bottle. She was making lots of urine. I just don’t understand what happened.
Dr. Kyle called to find out how the other kidney was doing and they said it was acting sluggish also, so he said he thinks it’s just how they are gonna be for a while. Let’s all pray for it to kick in soon…
What’s really scary also is they dipped her urine and it tested positive for protein, which was what was wrong with her native kidneys. And they left her native kidneys in, so a fear would be for that IGA nephropathy to move to the new kidney.
Lord, I just hope that doesn’t happen and things pick up soon. It’s never easy, is it? Our favorite ICU doctor made the comment of how Destiny never gets anything for free, she always has to earn it. That is so true… and so unfair…
PLEASE REMEMBER TO PRAY FOR HER… I know GOD is in control and HE has a plan and all things will work accordingly to HIS plan, I just pray HIS plan is for Des to come through this and be a testimony of HIS love and grace. That her trials have a blessing to uncover, a happy life to be lived… All the wonderful joys of being a kid. Learning, laughing, playing, and growing… Knowing the people that make up her family. I could go on and on but I will end with a thank you and a big hug and kiss from her and I both. May GOD smile on you all!
Thursday, January 27, 2005 12:28 AM CST ----------------PRAISE GOD------------------------
This is gonna be a quick update.
Destiny had a call for a kidney yesterday, we didn't know for sure if she was gonna be able to go so I didn't post anything last night. But this morning she was called to go to the O.R. for her new kidney!!!!
She is currently still in the O.R. and doing well.. Dr.Kyle called a few minutes ago and said she has already made urine!!!!!! Thank you, Jesus. And thank all of you who have been praying for this day....
I will update you more as soon as I can. Keep the prayers going up for her... Thank You!!!
Tuesday, January 25, 2005 11:02 PM CST Jan.25,2005 Tuesday
We’ve had a pretty stressful day as far as dialysis went. First her catheter wouldn’t act right and we had to put TPA in it, then she clotted the dialyzer right at the end of her treatment and lost quite a bit of blood. And too she lost more fluid-weight then she was supposed to. So now she’s very thirsty and supposed to be limited on her p/o intake. But to add to it all she dumped a lot more today then she has been… double what she put out yesterday. Yet her scope yesterday looked good and her biopsy came back wonderful. So what caused her to put out so much today? Beats me! It’s just one of those days that makes me want to crawl up in under a rock some where. I just get so scared when this kind of stuff happens because I know we can’t keep doing this for a long time when we are already having issues.
Please keep prayers going up that she will get her break soon…..
Thank you,
Friday, January 21, 2005 11:27 PM CST Jan 21,2005 Friday
Destiny is doing good today. She has been talking and talking today. It is so cute. Some new words are cheetos, crackers, chocolate, and gauze. My favorite though she did today was shaking her finger at me and saying “no no” while I was clipping her toe nails. It was hysterical!!
She had a pretty tough time getting over the line placements but I think she’s starting to feel much better now. She’s been on and off oxygen ever since the night of the placements. Her BUN is down to 38 and creatin is down to 1.4, that’s lower than it’s been in a while. She was dialyzed yesterday and did well.
I also found out yesterday that Infection disease doctors recommend she finish her fluconazole and have a week of negative cultures before she become active on the transplant list so that would put us at Feb.18. But Dr. Mazareigos said today that he spoke to them and they will make her active and just decide at the time of a call whether or not to take her. As long as she is clinically well with no fevers and it is the ideal donor, they will transplant her.
I just want to ask everyone to continue prayers for her to stay well and keep up the strength.
And for Mr. Taylor…. we love and miss ya’ll very much. Give Bryson a big hug and kiss from him Momma and Sissy!!! And also Memaw and Pepaw and everyone else down there. Thanks for everything.
Wednesday, January 19, 2005 1:10 AM CST JAN. 18,2005 Tuesday
I am so proud of my big girl, she did wonderful with the line placements. She got a tunneled vascular dialysis catheter on the right side of her chest and a double lumen broviac on the left side. We decided against the med pore because it didn’t really make any sense due to the fact she is on 24 hour fluids and other meds too so she would have to be accessed at all times and it’s like having a single lumen where not everything is compatible. So we have a double lumen…When she was taken to the recovery room she was already awake and I was allowed to go in like 10 minutes after she got there and she wasn’t on any oxygen and alert. She looked at me and said “Mom… cheese…”. She was wanting to eat already. She looked at the nurse and said “bye,bye”. I laughed and laughed. But then when we got back to our room and the pain meds wore off she was in so much pain and just beside herself. We ended up giving her some morphine and she was able to rest a bit before dialysis. I don’t know what they were thinking in the O.R. but she got a lot of fluids so she definitely needed to be dialyzed today and too her BUN is 102 and creatin is 3.5. Yikes! That’s with not getting dialyzed since Saturday. Man we don’t need to skip too many days, huh? She tolerated it well tonight besides that initial nausea that she’s been getting lately. We come to the conclusion that it’s the albumin that they prime the system with. It’s just too much of albumin all at once and too much blood coming out at the same time and she gets sickly for about 5 minutes and it’s done. Weird…But it’s kinda like a reminder that this is not a simple little thing we are doing, this is serious and a major shock to her system every single time it’s done. I just hope and pray we don’t have to do this too long before she gets her break.
All in all she is doing magnificent, I think. Just seeing her smile makes my life easier. It’s the smile that can take all the ugly in the world away!!!
I want to thank God for all our blessings as well as our trials for through our trials we learn to appreciate our blessings! Some days that’s really hard to admit and I don’t guess I’ll ever quiet understand it! But Thank You, Jesus!!!
Monday, January 17, 2005 2:43 PM CST JAN. 17,2005 Monday
We are having a pretty good day. Des is doing good and looking wonderful. Her output is still down!! Yes!!! Her FK was a little low today though which scares me. I don’t want her to get any “activities” or things going on again.
We took her vascath out this morning, she’s on the O.R. schedule for tomorrow to get a permanent dialysis catheter placed and probably a med pore in place of the triple lumen IJ. I don’t know much about med pores but I’m pretty fast to learn whatever she needs me to know. Des is all about teaching me lots of stuff that I never was much interested in!!! Oh how things can change…
I was putting headbands on her to keep her vascath standing up right without pulling on her, and now that it is out she still wants her headbands on. She’s such a mess, bless her heart. She’s sitting in her crib eating slice cheese, licking hot tamale candies, and watching Teletubbies on her little TV. Now she’s hollering to go for a walk so I guess that’s my cue to get off the computer, huh?
Thanks for the prayers and cares…. We send our love out to you all!
Sunday, January 16, 2005 0:22 AM CST JAN.12, 2005 Wednesday
Des has been laughing and playing all day. She has kept me in stitches all day!! Makes my heart feel good. She’s lost so much weight though, she’s a little bean pole.
They allowed her to start eating and limited her drink. She tried to have some macaroni and cheese but got sick. And her tube feeds have been making her ill too.
JAN.13, 2005 Thursday
We are having another happy and playful day. I can’t believe how much she has been giggling.
Today we switched back to J-tube feeds because she got sick again last night and today. I guess we’ll check placement of her g-tube.
She got a scope this morning and it looked good, let’s hope the biopsy is good. She has been having more and more stool out though so it wouldn’t surprise me if she’s still got some apoptosis or “activities” going on.
She got dialyzed today and did well. I’m feeling she needs a little extra fluid. They are increasing her TPN to give her more calories. Hopefully she will gain some true weight soon. I just hope and pray everything will begin to fall right into place. We need another miracle!!!!
JAN. 15,2005 Friday
Well I am happy to report that Destiny’s output slowed way down yesterday and her biopsy was perfect… Very glad to be wrong!!!! I can’t believe how her stool has changed so quickly. Today it was a little more but still not horrible like two days ago. I just pray it stays down. She is still just as happy and playful. Dialysis today was abit rough though. Her vascath was being extremely temperamental and positional. She did so well through it all though. I’m SO proud of her, such a big girl. I think they may schedule her to go to the O.R. to get a permanent dialysis catheter and a broviac placed sometime next week. It will be nice to get these out of her neck but of course I worry with her going to the O.R.
Your continued prayers and support is greatly appreciated…
Monday, January 10, 2005 10:33 PM CST JAN.5,2005
This was a very traumatizing day for both of us. Des got dialysis today and did ok but her vascath was being tempermental and the dressing changes was a disaster. Her pressures went high this time and she had to receive several different blood pressure meds to bring it down. My child is so confusing… ha …
Bless her heart. After dialysis she was extubated and the ng tube removed and got rid of the arterial line. So that was a lot of different things going on today. Through it all she did good, except when someone would come near her she would wig out. I’ve never seen her so feisty and angry. I can’t blame her though…
JAN.6,2005
We got moved to the IICU last night but ran into some respiratory distress this morning. Turns out she still has some fluid on her lungs so back to the PICU for dialysis again today and so they can keep a closer eye on her. She is on high pressure flow o2.
She also got scoped today because her stoma output turned to water again. It looked good but we’ll see what the biopsy shows.
Thanks to Aunt Gigi and Cindy for the visit this evening, it really made a difference for Des to see some familiar faces.
JAN.7,2005
Destiny is looking and acting so much better today. She’s not wigging out on everyone as bad. I’m glad she was starting to worry me.
Her biopsy came back with scattered apotosis, which is dying cells.. indication for rejection. We just need to pray she don’t drift back there.. We have enough issues without that right now.
She has been listed for kidney transplant, an exception letter has been put in also. So now we wait….again. This is not where I thought we would be 17 months after a multivesiral transplant. When does it get better for Destiny??? We’ve seen so many do so wonderful, I just don’t understand. But I guess I’m not supposed to understand. Just do the best we can and take it one step at a time.
Continued prayers are appreciated greatly!!
JAN.10,2005
We got moved to the floor today, Destiny is doing so much better. She's off o2 and everyhting. Still praying for a miracle to hit her kidneys, but very greatful for the day...
Tuesday, January 4, 2005 10:47 PM CST JAN.4,2005
Destiny was ready to be extibated today but when they deflated the cuff to the breathing tube there was no leak so that meant her air way is too swollen to take her off the vent. So they left the cuff deflated and are giving her iv steroids to help the swelling go down and in the morning after dialysis they will try to take her off. She will feel so much better if she can get that tube out.
They are getting her listed for a kidney transplant. Dr.Ellis is working her up towards the top of the list because she has no more access for a vasocath and the one she has is not a permanent one. I don¡¦t know what to think about all of this, I¡¦m having difficulties with it all¡K God just guide us and lead the way, and provide for her as we go¡K
Bryson turned 6 months old today¡K¡K. My boy is growing up without meƒ¼ Wish Des and I could be with him.
Thank you for your continued prayers and support.
Monday, January 3, 2005 0:21 AM CST DEC. 31,2004
New Year’s Eve!!!
Another year come and gone… Let’s pray for a better one this year.
Briefly updating…. Today Des seems to be feeling alittle better. She didn’t receive dialysis today. Her BUN is 19 and creatin is 1.5. I had a small melt down today because I came in after the pm shift change and Destiny had blood all around her neck from her vasocath. Mini stroke!!
I got the best new years kiss though, from my favorite person in the world… My precious little girl!
JAN. 1,2005
HAPPY NEW YEARS TO ALL OF YOU!!!
I really hope this year is better… but we did start it out with some bad news. I had a huge melt down today. We had a positive culture come back from her vasocath. She don’t have another site to put one so for now they are gonna continue to use it and keep treating her and hoping and praying for the best. They did rewire her IJ just in case it was infected too. She did receive dialysis today, we only took off 200cc and she did wonderful. Never dropped her pressures too low or anything, they said because it was such a gentle cycle. For whatever reason I’m just glad it went smooth. Dr.Ellis is working on getting her listed for kidney’s but as long as she is still having positive cultures she wouldn’t be able to be transplanted anyway… So we just need to keep on praying God will cleanse her of this infection and wash her kidneys clean to where she wouldn’t need to be transplanted… That’s my will, I hope it is His too.
JAN. 2,2005
Des has been pretty feisty today, bless her heart she’s ready to get off this vent. And they did say her xray is looking much, much better so they are saying within the next couple of days she should be off. I can’t wait. I miss her little voice so much and her giggle. I know she will be hoarse for a bit but we get past that. She wasn’t diaylised today, her BUN is 24 and creatin is 1.6. We plan on dialysis tomorrow.
To everyone thanks so much for all the support and prayers, and may I ask? Please continue to lift her up!! God bless!!!
Saturday, January 1, 2005 0:53 AM CST WED. DEC 29,2004
Once again I spoke too soon.... Dessy's culture today came back positive for yeast again so they decided to pull her broviac. She went to the I.R. for this procedure against my wishes. They were unable to get the broviac out because it has been in for almost 2 years so they messed with her and pulled at her for at least an hour and a half. They put a triple lummin I.J. in the opposite side of her neck to her vascath. She came out of there looking horrible. She has a big bloody knot above her broviac. It is just nasty looking. My poor baby! I can't beleive they did that to her. So she will need to go to the O.R.; like I wanted her to do to start with; to get this disgusting line out.
On a good note I was excited to see her BUN went down to 45 from 90 and her creatin went down to 2.7 from 4.4!! I wasn't really expecting it to make such a big drop with the first "gentle cycle" of dialysis. She got a more aggressive cycle today, she did well most of the way through it until the last 20 minutes her pressures started dropping so they just shut it down early instead of giving her too much fluids back to bring them up because thats the reason we are doing the dialysis, to bring fluid off of her. We got 470 off today and she don't look near as puffy. I'm concerned about her abdomen area though because it is so distended but the dr.'s don't seem to be so worried about it. They did a xray and it showed a very small amount of air but not bad.
Did I report that her biopsy from mondays scope looked wonderful. No rejection or "activities"! Thank you,Jesus….
THURS. DEC 30,2004
Des got dialysis again today and her pressures dropped within 5 minutes, We got it back up with albumin and mannatol, then she did good through pretty much the rest of the cycle. Her BUN is down to 24 and her creatin is down to 1.8 today!!
She went to the O.R. around 2am to have the broviac removed, it went smooth. She was in and out of there within 45 minutes. Dr.Sindhi drained some of the blood from the hemotoma that the I.R. made. It don’t look as puffed out but I haven’t seen the site yet because of the pressure dressing he put on it. She’s been waking up alittle more today. Her abdomin is still distended even after taking off 540cc today with dialysis.
Thanks for all your thoughts and prayers…. Your support has helped a lot…
Tuesday, December 28, 2004 11:44 PM CST Destiny had a very busy day today. She went for the vascath placement then within an hour and a half she received her first run of dialysis. She made it through it. She clotted the machine within the first 20 minutes, her blood pressure dropped from 150/80 to 90/40 real fast and her heart rate dropped down to the 50's. It was pretty scarry for me but the ICU dr. said it's normal for the first round plus she was still so sedated from going to interventional radiology that they beleive that's why her heart rate dropped so low. She will probally get another round tomorrow and it will be a more aggresive round. They took 300cc off of her today over 2 hours. Tomorrow will probally be a 3 hour round. Tonight she is having high pressures again with a low heart rate so they gave her some pressure meds and now she's too low. Up and down.... Up and down....No happy medium.
A real good report is that her cultures are all negative!! Thank you, Jesus! We've been able to go down on her vent settings some too. So I am very pleased with that. I just really didn't want her to have to go through this dialysis stuff but I'm still hopeful that her kidneys will eventually decide to kick in and start working. I'm curious to see if her BUN and creatin has changed at all.. This mornings was BUN 90 creatin 4.4! Yuk!!
Well all please continue to hold her in your prayers. And we thank you...
Monday, December 27, 2004 0:45 AM CST My poor little baby girl is so sick. She ended up getting placed on the ventilator last night. She went into what they're calling ARDS (acute respitory distress syndrome). Her lungs on xray looks horrible. Her blood cultures are still growing yeast. She was running fevers again today. They said we'll probally start dialysis tomorrow, they're hesitant though because they don't want the vascath to get infected as well. But it might take dialysis to help her get rid of these bugs. I don't know; I'm just so scared for her. Her BUN is up to 89 and creatin is 4.1. Tonight her pressure went way high and her heart rate was dropping way low, they think because she got quite abit of volume today with blood and everything else and she's not peeing hardly at all. So they backed off on her fluids alot and when I left tonight she was looking good again. I just hope she has a good night and things look better tomorrow.
Bryson and "Wus" left today, that makes me sad. But Destiny don't need to feel me being down she needs to feel strength and hope right now, so I'm holding it together the best I can. We are in need of more and more prayers! I know I ask all the time but I beleive with your help God will turn this all around for Des. Bless her little heart she is a fighter but she can't do this all alone, she needs God's blessings!
The love and support you've given us has made such a difference in our lives. We thank you so much! God bless...
Sunday, December 26, 2004 1:02 AM CST So sorry it has taken me a few days to update. Things aren't going so well. Destiny started having trouble breathing again and ended up on oxygen. Her chest xray looked funky, so they called in pulmonology and they wanted to do a sleep study and a bronchia scope. I agreed to the study and it showed she was having periodic breathing so the dr. said she needs to be on o2 and a pulse ox at night.
On thursday she woke up with a fever around 104 and just miserable. We did the whole culture work up and turns out Destiny has her first line infection in over 2 years and it ain't a simple one... She went septic fast. Christmas eve morning she was moved down to the PICU with respitory distress and just beside herself. Her blood culture and urine culture tested positive for yeast and clepsiella. Her lungs look really bad on xray. She is getting more and more overloaded even though they are doing their best to keep extra fluid off of her. Christmas morning they placed her on cpap then Christmas night she had to be placed on the ventilator because she is having a horrible time trying to breathe. They are still debating on starting dialysis. They don't really want to put the vascath in with her having positive cultures. She's just not doing so hot.
She did recieve alot of gifts for Christmas and was able to visit with her Bubba and Dewayne before all this got so bad. They are heading back to Texas today.... We will miss them again. But it was so nice to get to see them. Although this was a very sad holiday we are thankful to have eachother.
And we are very greatful to have so many of you praying for us. God bless...
Tuesday, December 21, 2004 1:21 AM CST We got some wonderful news today.... Destiny got scoped and biopsied this morning and they ran it rapid so we got the results from the biopsy this evening. It showed NO REJECTION and NO "ACTIVITIES"!!!!! Let's praise the good Lord for that. She will get scoped again next monday to make sure it remains away.
We had our care conference today and it wasn't as bad as I had prepared myself for it to be. The Dr.'s let me know what they want to try now. And basically it's another kidney biopsy to determine the extent of damage. And do our best to keep her away from dialysis as long as possible. The kidney transplant surgeon will be coming to speak to me at some point this week. We are still hopeful that it will not come to that but we need to be prepared and ready. Let's all pray that the biopsy will show no permanent damage and all can be corrected!!! Her BUN is at 57 and her creatin is still at 3.4 today. We Need Urine!!!
Des is still not allowed to eat or drink at this time. They want to watch her for another couple of days and hope things will change for the better. Her stoma output hit a record low of 365cc... If only she could do that while getting feeds and eating! Her FK today was extremely high at 31. No one even apologized for the mistake made yesterday, which is a bit disturbing.
A big ol' Thank you to all that have been praying for us and getting others to pray also... "Surely goodness and mercy shall follow...."
I would like to add another thanks to my wonderful friend, Georgia for making my birthday a happier one. I am so proud of the gift of your friendship, may God smile on you and your family always. And Cindy, a great friend you are... thanks for always looking out for me, you're the best.. Tracy, thank you also.... And everyone else as well!
~MERRY CHRISTMAS AND HAPPY NEW YEAR~
Monday, December 20, 2004 1:13 AM CST Well we spent the weekend in the ICU. Friday mornings potassium was a bit high so we did a bicarb run and repeat labs that showed her potassium had went up instead of down. So we did calcium gluconate and another level and again it went up to 7.2, which is critical. So off we go to ICU where they gave her several different things to get it down, drew levels every 20 minutes until they were happy. Thank God it came down and has stayed stable since. I was very scared because this was all related to the kidney's failing and they said if the potassium didn't come down they would have to start dialysis immediatly. Her BUN has risen to 50 and her creatin is up to 3.4! Extremely scarry... We have a care conference scheduled for tomorrow to see what the plan is going to be.
Today (sun) a major mistake was made in her care. The Dr. ordered her to have extra FK (immunosuppressant) based on yesterdays (sat) level instead of todays level,which was extremely high at 26.6, for those of you that don't know... FK is very hard on the kidneys. So here we have a child in the ICU for kidney failure and they make such a mistake, it's gut wretching! I hate to see what her level will be tomorrow and how much more damage it did to the kidneys. And they wonder why I dont have much faith in their decisions all the time. I have a tendancy to question everything. Today was just another prime example of why I do just that...
She's scheduled for a scope and biopsy tomorrow. Let's pray the rejection and all "activities" are gone... That would be one less thing to worry about at this time.
We need you all to pray and pray again for her.... Thank you for your support.
****MERRY CHRISTMAS AND HAPPY HOLIDAYS****
Friday, December 17, 2004 8:18 PM CST We are having a very trying time right now and I'm asking everybody to please send massive prayers up for Destiny. Ask everyone you know to do the same!
She is in kidney failure and it's just not looking too good. Her numbers have continued to rise over the last couple of days. Her BUN is up to 40 and her creatin is up to 2.7. Those are not good numbers at all. The Dr.s have changed a few things around to see how she does over the weekend, if it don't improve I'm scarred to say what will be our next trial. They don't seem to think she could handle dialysis but we may have to try. And it may mean another transplant. Which I will do all the testing to see if I can give her one of my kidneys. I just don't know if mine will be healthy enough for her or if they will be too large. I don't know...... I'm just praying God will turn this around for her. It is a miracle she is here today so I know there are miracles, I just hope God will give us one more.
Her scope looked good again but the biopsy is still showing rejection, so they can't really lower her FK too much even though it is so hard on the kidneys.
They have once again taken her joy away (food and water). They put her on full blown TPN 24 hrs. a day. Stopped her g-tube feeds. What I'm understanding is that they want to get her output down to like nothing to see if that will help the kidneys. I hate that so bad, she was so happy and a totally different kid. She has so much drive and determination. I can only hope that will keep her going for many many years to come.
Thank you all for your continued thoughts and prayers. Please do pray!!!!
Wednesday, December 15, 2004 12:47 AM CST Well it's been a pretty busy few days. Destiny's urine output is still horrible, her kidney function tests are not good either. She is in renal failure. They're loading her down with fluids trying to make her urinate but so far it hasn't worked, her weight is way up with it. They want to watch what she does for a couple of days, and decide what needs to be done. It has been brought up that she made need a kidney transplant if it don't improve. I am completly terrorified of what this all means, I just pray for another miracle. The kidney Dr. mentioned he don't think she would be able to do dialysis because she is so fragile and fluid sensitive. We desperately need our prayers warriors to suit up!!!! None of this is too big or small for our Lord. I'm having a hard time but I know God is on our side and through Him Destiny will be made well.
She has been 24 hours off oxygen, sats did drop some during the night but came back up quickly. She was scoped on Monday and the scope itself looked great but the biopsy showed mild to moderate rejection now and some other "activities" also. So she was bolused with steroids again and being recycled down again now. She will be scoped again tomorrow and we hope it will be better.
Another stressfull incident happen also, to put it briefly... We no longer have a physician's assistant willing to take care of Destiny. We never really seen eye to eye, then it all added up and yesterday it exploded. We now have the fellow to deal with directly, and I feel much better about this. Alot of trust was destroyed early on with the P.A. and it continued to be, almost on a daily basis. I didn't really need the extra drama but when it comes to live of my baby girl I WILL NOT back down!!!!
Destiny remains in good spirits,thankfully! Very happy to be eating her cheese! Her favorite thing to eat is macaroni & cheese and chips with cheese dip. It's so funny as soon as she wakes up in the morning the first thing she says is "cheese"!!
She's been working with a physical therapist to get her walking and she is doing so good. She tries so hard. She's not walking or even standing by herself but she's getting there. Bless her little heart!!
Another little girl we know here has been having a very rough time and needs special prayers, her name is Laneigha. Please include her in your prayers also..
Thank you and God bless you all!!!
Christie
Saturday, December 11, 2004 2:28 PM CST Destiny is doing ok today besides requiring oxygen at all times and not urinating again. It's never ending!
She did go for a ct scan yesterday and it showed she has a sinus infection. There's lots of fluid build up behind her sinus'. Today we had to go for another chest xray because she sounds alittle wet and because she can't get off o2 at all today without her sats dropping. We're gonna get ENT dr. to come see her to see what we need to do about the sinus infection. And renal is supposed to come back because of her urine output being so low and her kidney functions look horrible. She's loosing lots of protein again and testing large for blood in her urine.
I had my big melt down on thursday, just so tired of being here in the hospital and everything not getting better. I need to find peace with God, I hate to say it but I'm feeling really angry with Him right now. So thursday night I pulled my Bible out and prayed harder than I think I've ever prayed for myself. I feel better but still need some serenity, so if you could would you please add me and my sanity to your prayers that you send up for Des. We really appreciate it!!!!
Also sending thanks to Myriam Perez and Selena,Joel, and Dakota for the Christmas gifts we received in the mail for Des. That was very sweet of you and greatly appreciated.
Sincerely,
Christie
Thursday, December 9, 2004 0:36 AM CST Another rough night. Des ended up getting a chest xray in the middle of the night and put on a better source of oxygen. Her sats just kept dropping too much. They said her xray looked ok though. We're supposed to get a ct scan of her sinus, I'm not sure when but hopefully soon.
She's still wanting to sleep alot. And throwing up alittle too often.
I'm just hoping we can get out of here for Christmas and I'd really like to stay out, too... Bryson will be coming back at Christmas time and we can't wait to see him. I miss that little guy so badly.
Keep on praying!!! We thank you all for the continued love and support. May God smile on you!
Tuesday, December 7, 2004 5:31 PM CST We have had a stressfull week. Destiny has a head cold or something making her completely miserable. Her oxygen sats keep dropping. All she wants to do is nap... She's been sick to her tummy today.
She was scoped yesterday and I was just informed of her biopsy results... slight improvement. So I guess that means still in rejection.
Need more prayers!!!!
A GREAT BIG THANKS TO KERRA AND GRANT FOR THE COMPUTER... Ya'll are the best.
Wednesday, December 1, 2004 5:39 PM CST Let me try this again... I sat here last night and typed and typed an update and before I could get it posted it disappeared. That's always nice, huh?!
Anyway we have been pretty busy this past week. Dewayne and Bryson came here for Thanksgiving and we had a great time with them. Lil' Bubba ain't so little anymore, we miss him dearly and "Wus" too. Destiny just loves old Wus. Thankfully Destiny was well enough to take several passes from the hospital. We were able to get a picture with Santa and go have Christmas pictures made. Des didn't care for Santa though, now when I ask her if Santa is gonna come see her, she cries. Bless her heart!
Des is still dumping like crazy. She got a scope yesterday and it looked good but Dr. Kyle just come to give me biopsy results and for the first time since transplant she is in rejection. It's mild but Oh My!!! She will start IV steriods tonight and they'll increase her prograf (immunosuppressant). She's been cleared of the adnovirus, thankfully. Just yesterday I kinda got the impression they were about to give up on her ever absorbing. They've maxed out her dose of tincture of opium, added levsin, lomitil, and octreotide and no improvment so at least now there is a reason for the massive dumping, not what we wanted but we now know that it can change and get better.
Please keep her in your prayers as we venture off into unfamiliar terroritory... It's the most common thing she has done since this journey has begun. Frightening as it may be, it's something the Dr.s deal with daily so we can just be hopeful and pray for the best. Thanks for your continued support...
Christie
Sunday, November 21, 2004 0:11 AM CST NEW PICTURES!!!
Well it's been a week since I've updated so there's lots of things to talk about but I'll keep it brief. It's been along week with fevers and some vomitting. She had a stool culture from Oct. to grow adnovirus so that may explain all the dumping she's been doing lately that seemed to be getting worse and worse. Now we know why... As far as the fevers, they are thinking it could be from the virus. The vomitting I think was from getting changes in her tube feeds and increasing the tincture of opium and being allowed to eat a few more things, which made her very happy but she is still having difficulties with some things so we have to be very careful. But could also be from the virus. Anyone of those things could cause her discomfort, so as for right now we have been holding her tube feeds and cut her opium back, started alittle reglan back up and just waiting for her to begin to feel better.
I do want to take this time to send out a special thanks to the anonymous persons responsible for the gift we received through the hospital social worker this week. It definately will come in handy this holiday season!!! Thank you so much and God bless you!
God bless you all...
Love, Christie
Sunday, November 14, 2004 11:23 PM CST Well the weekend is over... And we got to enjoy another outting on saturday. We went to "the big toy store", Toys R us and finally started Christmas shopping. Santa wants Destiny to have a portable DVD player this year and her own movies. It's very popular for hospital babes! So she got to pick out a DVD and Makenzie, her mom, and Nanna got her a really nice rocking horse for Christmas. We can't wait to play on that! Thank ya'll very much, that's a very nice thing ya'll did!!!
We were unable to go out today though because she started stooling out a truck load and we had to start replacement fluid again. :( I don't quite understand where it all came from but it was an extreme amount. She was very thirsty during the night last night and drank alot but I'm not sure that that was the cause.
As for her biopsy results; about the same as the last one, no rejection yet some activity. She hasn't had anymore bleeding going on, very thankful for that!
And very thankful to all of you who continue to check on her and hold her in your thoughts and prayers!!
God bless you all and have a wonderful week!
~Christie
Friday, November 12, 2004 11:13 PM CST She went for her scope and it looked great but I haven't got the biopsy results yet, I will post to let ya'll know how that looks.
More problems arose later in the day, she vomitted blood a couple of times and she was just miserable acting all day. They started her on carafate (helps with stomach acids), we got an abdominal x-ray today and Dr.George said her tubes are in place so it's not that causing the problem. She seems to be better today, no blood anywhere anyways, but she is still real figidy.
We got to go out on a pass today!!!!! She was so tickled to go "Bye Bye" bless her heart she kept saying it over and over, when she was awake anyway. As soon as she got in her car seat and the truck was in motion she went to sleep. We went for a quick shop trip and came back but man did it do us some good?!! I'm hoping we can go again tomorrow if she's feeling up to it again.
Let's Hope!
Thursday, November 11, 2004 0:43 AM CST Well I knew I would regret getting so excited about things going good... Wednesday morning Des woke up with a slight fever and had some old blood in her ostomy bag. As the day went on it got worse, but then stopped. And she was feeling uncomfortable and groggy all day. They are going to scope her in the morning to see what's going on in there. We drew some gastric contents out of her stomach from her G-tube to test the PH because there was thoughts that it could be an ulcer, but it tested good and there was no blood in it so the bleed is not coming from the stomach it has to be in the bowel. It's always something...
Her leg where she had the blood clot before was looking worse so we went down for an ultra sound and Thank you Lord, there's no blood clot but it's just not moving as nicely as it should due to the damage the clot caused to the vessels.
We continue to need prayers that soon we will see some light!!!
Makenzie is in need of prayers also!!!
Thank you and God bless,
Christie
Tuesday, November 9, 2004 11:58 PM CST Hope everyone enjoyed the new pictures of Halloween.
She is getting so big lately, I've really noticed a difference in her this past week. And I don't think it's fluid because she's not getting alot like before. They have her ordered for replacement if she is negative during an 8 hour shift but so far she's been good. Her feeds are up to goal and she's tolerating them just fine. Her output is still too high but is improving. Somedays it's back and forth but all in all is better. She don't seem to be as groggy with the opium as she was.
I've convinced them to give her a couple of hours off of fluids a day so we can go out on a pass from time to time. She has been wanting to go "bye bye" alot lately and it's breaking my heart. So maybe tommorrow we can go hang out at the hotel for a while. We both need to begin our transitional phase... Not that we will be getting discharged anytime soon. But we must stay positive and hopefull!!
Please continue to keep the prayers alive for Destiny as well as for her little friend, Makenzie, who is still battleing a bad case of rejection. Thank you.
Friday, November 5, 2004 11:28 PM CST Destiny is doing alright today. She's been feeling better and looking good, she's puffy but finally started peeing again.I'm concerned about her oxygen sats going down though. She still has a cough but seems to be getting over it. I hope so. Her output went down a bit today too. Even with her feeds going!!! That opium seems to be helping. Sometimes she seems alittle too druggy, which is concerning to me. I don't want her feeling dazed and confused all the time.
We're hoping to get to take a pass to the circus on sunday. I know that would tickle her silly, she needs a break from here.
Thanks for the continued support. God bless!!
Tuesday, November 2, 2004 11:49 PM CST Sorry about the skip in updates. I updated on sunday but it wouldn't go through, so anyways.
It's been pretty hectic and stressfull. Des has been having respitory issues. She got overloaded again and on top of the cold she has she has been having difficulties. She scarred me last night real bad. She had to get a breathing treatment and a chest x-ray in the middle of the night. They said the x-ray looks ok, just alittle fluid on one side but no pnemonia. Thank you Jesus for that.
Her feeds have been off for a couple of days due to all this, so her output went down some. We discontinued some of the meds. she was on for the dumping and we're just trying tincture of opium now. I sure hope it works. We really need her gut to start absorbing so she can get off this TPN. Her liver functions are still good but as you know TPN will eventially take its toll.
Your continued support and prayers are definately needed and appreciated.
Halloween pictures will hopefully be posted this week.
Friday, October 29, 2004 11:40 PM CDT HAPPY HALLOWEEN TO EVERYONE!!!!:)
We had a good time today trick or treating the hospital. Dessy got alot of toys and books to keep her busy for awhile. She was completely adorable in her outfit. Cutest little piggy I've ever seen! It was nice seeing all the other kids out and dressed up too.
So far no changes in her output but she's resting better. We had to start replacement fluids again today because she's just not peeing and having a high heart rate. She's so difficult to manage right now for some reason. We did speak with a regular pediatrician today to just get another idea from a different perspective, but he was stumped too. Nobody understands why she's dumping so much.
All her cultures so far are negative...Thank you for the prayer. She will get a chest x-ray tomorrow. I'll let ya know how that turns out. I'm hoping this cough is a simple cold that will go away soon! She only had one fever today, thankfully.
Our special little friend Makenzie needs more prayers today. Her rejection was resolved but appears to have retuned, so if you could please lift her and her mother up in your prayers tonight along with Destiny.
Thanks and God bless you all!!
Friday, October 29, 2004 1:26 AM CDT Destiny went for her G/J-tube placement on weds. and all went well. I guess when they put the J in the G pulled down and the Dr.s decided it was OK to use the G-tube now. Which makes me much more happy. I just think it will be better for her to be fed in the stomach instead of directly into the intestine. So far she's tolerating it and only 10cc away from her goal. Sometimes she seems alittle uncomfortable but she hasn't had much in her stomach in along time.
Me and her both have a cold right now. She's been running a temp with it. We drew every kind of cultures today so pray we get good results from them. Lord knows we don't need it to turn into or be something bad.
We had a new Dr. here this week (Dr.Bond) and I really like him. He seems very serious and caring, we're all hoping he sticks around permantly. He had some new and different ideas. Suggested an old school drug for Destiny to help her bowell slow down, I sure hope it works that would solve alot of our problems.
We're looking forward to trick or treating here in the hospital in the morning. Can't wait to post those pictures, you're gonna love it! Check back next week to see!
I would like to send out a special thank you to all of our friends and family for the continued support and love. We love you all very much!!!
Wednesday, October 27, 2004 1:33 AM CDT Well today Dessy had to go for a new g-tube down in Interventional Radiology because the balloon in hers had busted and then the stablizer bowed and was actually pulling the balloon to the surface. Now tomorrow she will go for a G/J-tube because when they placed this one and pushed contrast in to make sure it was in place it was angled upwards, which will cause her to probally be sick with her feeds. It's very irritating to me because I just wanted this to go smoothly. And why is this angled wrongly? Lots of questions and aggrivations but little ole Des is still her sweet little self... Bless her heart! She wanted a kleenex to dry my tears as I cried with frustration. She is such a loving and caring little girl! A beautiful blessing. Her smile makes it all worth while.
We're still battling fluids. Her scope was beatiful and the biopsy was an improvement from the last! Which is wonderful! So the question still remains, "what's making her output so high?" I just don't know.
Thanks to all that signed her guestbook, for your support, thoughts, and prayers...
Wednesday, October 20, 2004 10:33 PM CDT I'm sorry I haven't updated sooner. Really not much has changed. Still dealing with fluid issues, loosing protein in urine, and having entirely too much output from her ostomy. They want to scope her again next week, I guess because her output went up so horribly this past weekend. We changed the formula for her tube feeds and added some more medicines so I guess we will see how that all will go... We really need a turn around for the good!!
She was in a really good mood today and looking wonderful. That always makes my heart feel good!
Please continue to keep my precious girl in your prayers and may God be with you all...
Tuesday, October 12, 2004 11:43 AM CDT Destiny ended back up in the PICU over the weekend but thankfully she is back on 7north again. I think she was just too dry. It's a balancing act from day to day!
I was able to go to Texas and take Bryson to my Mother's. Dewayne had stayed with her and when I called and he said they were taking her to the PICU I thought I would never forgive myself for leaving her for the first time in her life. But I'm just thankfull to my family, our wonderful friend Cindy B., Dewayne's cousin Ronnie, and our preacher, Brother Scott and of course God; for helping me get back as quickly as possible. And to get here and find she was doing much better.
Thanks to all for your prayers and support!
Thursday, October 7, 2004 0:23 AM CDT We made it back to the floor yesterday!! She's doing good. Off oxygen and starting to play. She was allowed a clear liquid diet yesterday and the look on her face was worth a million dollars! She just clapped and smiled and giggled! She didn't take too much though, suprisingly.
Her feeds had to be stopped because on x-ray they seen that her g-tube was out of place. It was up to her esophagus. But they got it back in place and started her feeds back up. So far she's doing pretty good I think.
Our little friend Makenzie really needs our prayers right now. As always we thank you from the bottom of our hearts! God bless!
Thursday, October 7, 2004 0:23 AM CDT We made it back to the floor yesterday!! She's doing good. Off oxygen and starting to play. She was allowed a clear liquid diet yesterday and the look on her face was worth a million dollars! She just clapped and smiled and giggled! She didn't take too much though, suprisingly.
Her feeds had to be stopped because on x-ray they seen that her g-tube was out of place. It was up to her esophagus. But they got it back in place and started her feeds back up. So far she's doing pretty good I think.
Our little friend Makenzie really needs our prayers right now. As always we thank you from the bottom of our hearts! God bless!
Thursday, October 7, 2004 0:23 AM CDT We made it back to the floor yesterday!! She's doing good. Off oxygen and starting to play. She was allowed a clear liquid diet yesterday and the look on her face was worth a million dollars! She just clapped and smiled and giggled! She didn't take too much though, suprisingly.
Her feeds had to be stopped because on x-ray they seen that her g-tube was out of place. It was up to her esophagus. But they got it back in place and started her feeds back up. So far she's doing pretty good I think.
Our little friend Makenzie really needs our prayers right now. As always we thank you from the bottom of our hearts! God bless!
Monday, October 4, 2004 2:01 PM CDT Destiny continues to be in the PICU with respitory issues. She's only on a small amount of oxygen and satting fine but her chest x-rays don't look so good and even alittle worse today. They are thinking she must have asperated during surgury and now has a pnemonia from it. Her fluid balance and electrolytes look better but have been everywhere this weekend.
They started her tube feeds today at a very low rate and will increase accordingly depending on how she does. Hopefully she will do great and won't dump them all out...
I will update again soon! Thanks again for the continuing of the prayers.
Friday, October 1, 2004 1:10 PM CDT Thank you all for the prayers!!!
She made it through the surgury fine but the recovery is still a fight. She had to go to the PICU because of low pressures, respirtory distress, and a few other issues. She will have to stay another night there and hopefully be able to return to the floor tommorrow. She's having fluid balance issues, and of 3 different doctors they all have a different opinion so I'm on edge. Let's just hope and pray they make the right decisions for Destiny!!! She's starting to look much better to me, yesterday she had me terrified because she just looked so weak and discolored. Her g-tube is pretty cool, it's a new and improved design... Much better than the old ones, I think.
Also, I was just informed of her biopsy results from yesterday. They are looking much better, not as much activities going on! That's wonderful news!!!
As alot of you know our little friend, Makenzie is here with rejection so could we all lift her up in prayer today also with Destiny?...
Thanks again for your support through these times... God bless.
Wednesday, September 29, 2004 1:37 PM CDT SPECIAL PRAYER REQUEST:
The surgury is still on for tommorrow! I'm very nervous but very hopefull that all will go well and she will be back to her old self shortly!
Want to send a special "Thanks" to Alice and Brett for posting new pictures, ya'll are the best...
I will update as soon after surgury as possible to let you all know how she is.
Please take a moment to lift her up in prayer.
Dear God,
Please hold our angel, Destiny in Your arms and give her the strength she needs to come through this surgury. She is a fighter and only through You Lord, has she made it to the now! Thank you, Father and bless us with Your presence!!
AMEN...
Wednesday, September 29, 2004 1:37 PM CDT SPECIAL PRAYER REQUEST:
The surgury is still on for tommorrow! I'm very nervous but very hopefull that all will go well and she will be back to her old self shortly!
Want to send a special "Thanks" to Alice and Brett for posting new pictures, ya'll are the best...
I will update as soon after surgury as possible to let you all know how she is.
Please take a moment to lift her up in prayer.
Dear God,
Please hold our angel, Destiny in Your arms and give her the strength she needs to come through this surgury. She is a fighter and only through You Lord, has she made it to the now! Thank you, Father and bless us with Your presence!!
AMEN...
Wednesday, September 29, 2004 1:37 PM CDT SPECIAL PRAYER REQUEST:
The surgury is still on for tommorrow! I'm very nervous but very hopefull that all will go well and she will be back to her old self shortly!
Want to send a special "Thanks" to Alice and Brett for posting new pictures, ya'll are the best...
I will update as soon after surgury as possible to let you all know how she is.
Please take a moment to lift her up in prayer.
Dear God,
Please hold our angel, Destiny in Your arms and give her the strength she needs to come through this surgury. She is a fighter and only through You Lord, has she made it to the now! Thank you, Father and bless us with Your presence!!
AMEN...
Tuesday, September 28, 2004 1:29 PM CDT Destiny is pretty happy today. Its so great when she smiles. God love her!
All her labs look alittle better today and her fluid balance is better so they got her on the schedule for the g-tube on thursday. So we will need many, many prayers from all of you.
It is really great to see new people signing in on the guest book. We love you all!!!
Tuesday, September 28, 2004 1:29 PM CDT Destiny is pretty happy today. Its so great when she smiles. God love her!
All her labs look alittle better today and her fluid balance is better so they got her on the schedule for the g-tube on thursday. So we will need many, many prayers from all of you.
It is really great to see new people signing in on the guest book. We love you all!!!
Monday, September 27, 2004 2:54 PM CDT Hey, sorry I never got around to updating last week. It's just been one thing after another.
Pancreatitis is back. They actually allowed her to have fat free milk for a few days but took it away again today.
She's been loosing alot of sodium so they took her ice chips away and only allowed her to have saline water and the nurse's came up with the idea to freeze some for her and suprisingly she likes it... But the down fall is it makes her more and more thirsty and she is limited. Which the last couple of days she hasn't been wanting much of anything because she can't have her real water. Poor baby!
Still loosing protein and getting albumin replacement 3x a day.
She had gotten fluid over loaded and now with the way they like to go to extremes around here; she's dry and miserable. What do you do?
Was scheduled for g-tube tommorrow but canceled today due to electralyte and fluid imbalance.
Despite all the TPN; I am very happy to report her liver functions are wonderful!!
Our wonderful nurse, Alice took some nice pictures of her this weekend and will be posting them soon, so check back to see. Thank you Alice, you're wonderful!
To all please keep the prayers alive... Dessy thanks you!!
Monday, September 27, 2004 2:54 PM CDT Hey, sorry I never got around to updating last week. It's just been one thing after another.
Pancreatitis is back. They actually allowed her to have fat free milk for a few days but took it away again today.
She's been loosing alot of sodium so they took her ice chips away and only allowed her to have saline water and the nurse's came up with the idea to freeze some for her and suprisingly she likes it... But the down fall is it makes her more and more thirsty and she is limited. Which the last couple of days she hasn't been wanting much of anything because she can't have her real water. Poor baby!
Still loosing protein and getting albumin replacement 3x a day.
She had gotten fluid over loaded and now with the way they like to go to extremes around here; she's dry and miserable. What do you do?
Was scheduled for g-tube tommorrow but canceled today due to electralyte and fluid imbalance.
Despite all the TPN; I am very happy to report her liver functions are wonderful!!
Our wonderful nurse, Alice took some nice pictures of her this weekend and will be posting them soon, so check back to see. Thank you Alice, you're wonderful!
To all please keep the prayers alive... Dessy thanks you!!
Friday, September 17, 2004 3:09 PM CDT Today is supposed to be the last day of the IV steriods I hope they don't change their mind. We checked her urine alittle while ago and there is still alot of protein in it. Bless her heart she has done remarkably well with dealing with not being able to eat. Her output has been pretty good lately. Tomorrow they will check to see if her pancreatitis has resolved then maybe they will let her eat something. Even if it's just jello I know she will be tickled to death!
Thanks to everyone that has stopped by to check on her! Your support really means alot to us! God bless...
Thursday, September 16, 2004 2:11 PM CDT I spoke too soon on the last update. Now I have more information and it's not as simple as it was made out to be. She has to get bolus steriods for 3 days then they'll back down to where she was at. She is receiving cellcept, another immunosuppressant plus her fk; 50mg of iv steriods, :( ; and captopril, a blood pressure med. used for this disorder. Disorder being: Iga Nephropathy. Another scary disease that can be very bad but we're being optimistic and beleive it will be corrected with this treatment and we'll move on! The good news is we caught it before any permanent damage was done to the kidney's.
Thank God for small favors.
Tuesday, September 14, 2004 2:50 PM CDT We got the final results in today. It appears it is something immune. She has an antibody called IGA showing up in her kidney's. Unlike "Evan's syndrome" this antibody can attack any part of the body and it has chosen the kidney's. The treatment will be steriods, that they have already started her on and possibly a drug called cellceph?. In other words making her more immunosuppressed. That medicine is to lower the white count. I did ask why these things are happening to her and the response was they don't really know but think it could be because she had a multiple organ transplant and has some much of the donor cells in her system. So instead of going into rejection, her body is fighting her body... That's the way I understand it.
On a good note she looks great and is being her happy little self!:)
Continue to hold her in your prayers and this too shall pass!
Monday, September 13, 2004 2:24 PM CDT We had a pretty good weekend after all. We were able to go out on a pass and go shopping, that's always fun. She is feeling so much better now and looks wonderful. Thank's to the good Lord and all of you who added her in your prayers! We are truly greatful!
We've gotten alot of the fluid off. Her pancreatitis is almost resolved. Her numbers are way down! She's still low on albumin though. The final results from the biopsy are still not in, they sent some special stains out that are taking a while to come back. So we continue to pray, they did report that there is no permanent damage and it appears to be something immune. What all that means? I'm not real sure but I will let you all know as soon as possible!
Again "Thank You" and may God be with you!
Monday, September 13, 2004 2:24 PM CDT We had a pretty good weekend after all. We were able to go out on a pass and go shopping, that's always fun. She is feeling so much better now and looks wonderful. Thank's to the good Lord and all of you who added her in your prayers! We are truly greatful!
We've gotten alot of the fluid off. Her pancreatitis is almost resolved. Her numbers are way down! She's still low on albumin though. The final results from the biopsy are still not in, they sent some special stains out that are taking a while to come back. So we continue to pray, they did report that there is no permanent damage and it appears to be something immune. What all that means? I'm not real sure but I will let you all know as soon as possible!
Again "Thank You" and may God be with you!
Friday, September 10, 2004 1:59 PM CDT We're still waiting for the results from the biopsy. She made it through it ok, but she is still having blood in her urine so we had to check her counts to see where she's at. Waiting to hear back from that too.
She's very puffy and overloaded with fluids, so now they want her to get lasix twice a day and some other med to help take all this fluid off. She went up in her weight 2 whole pounds in 24 hours. She looks and acts miserable today. It's so sad!
She is still losing alot of protein and getting albumin replacements 3 times a day.
I'm just praying we get good results from the biopsy and all this starts improving. SOON!!!!
Please help with many prayers. I know He hears us!
God bless!
Thursday, September 9, 2004 11:35 AM CDT Today we're waiting to go for a kidney biopsy. I am a nervous wreck! They decided they could do it in interventional radiology so it won't be as invasive, but still I'm worried to death...
I just want to hear good news for a change! It's always something and its wearing on me hard!
I will try to give you an update as soon as possible.
Please remember to say a prayer today for my little angel girl!!! Thank you...
Tuesday, September 7, 2004 1:49 PM CDT The weekend went ok except for a few things here and there. We had to cut back on her prograf because she started running too high of a level and getting real rashy with it. She is very swollen with fluid. Her weight is up to 7.4kg, which we havent seen that in a very long time. I just wish it was a true weight. Her leg that had the blood clot in it is so large now it is scary. They said today we can get another ultra sound done to make sure everything is still clear. Her electrolytes have been all over the place. She still has pancreatitis. Her kidney functions are looking alittle better.
She is sitting here screaming at me because she is bored so I will end for now and update more as I can.
Thanks for your support.
Tuesday, September 7, 2004 1:49 PM CDT The weekend went ok except for a few things here and there. We had to cut back on her prograf because she started running too high of a level and getting real rashy with it. She is very swollen with fluid. Her weight is up to 7.4kg, which we havent seen that in a very long time. I just wish it was a true weight. Her leg that had the blood clot in it is so large now it is scary. They said today we can get another ultra sound done to make sure everything is still clear. Her electrolytes have been all over the place. She still has pancreatitis. Her kidney functions are looking alittle better.
She is sitting here screaming at me because she is bored so I will end for now and update more as I can.
Thanks for your support.
Friday, September 3, 2004 3:27 PM CDT It's been an ok week. Dessy has been in such a good mood, playing, and just being a good girl.
They started her on steriods and so far they haven't made her crazy for food yet... but she is eating ice like there's no tomorrow.
Her renal functions are still elevated, albumin is looking alittle better. Dr. Ellis decided today to cut back on the replacement of albumin and see how she does. We are in high hopes that the steriods will begin to work to get her kidney and pancreas functions back to normal. If not she will have to have a kidney biopsy to determine the degree of damage on her kidney's. Which in alittle gal like her it means surgical... She does not need that stress. Nor I!!
Again say a prayer please!!!!
As for the g-tube it is still on hold because of all this that is going on. Dr.Sindhi said today that he would like to get us out of the hospital next week for a break and get some stability before the g-tube. But with her being NPO and on steriods it will be very difficult in that hotel room, with the kitchen in plain sight. Also, before; we had to come inpatient for albumin so I really don't think we will get discharged unless she receives a miracle from God and all is well with her numbers by then!!!
I will never give up on hope for that!!!
Thank you all for your continued support... And God bless.
Monday, August 30, 2004 2:20 PM CDT Over the last week things went up and down.
She is loosing a large amount of protein in her urine. So now we have renal involved and they ordered alot of labs for immune workup to see what is going on. They're thinking whatever's going on is something that is effecting her bowell, pancreas, and now her kidneys. They may do a kidney biopsy before its all over. Some of the results came back today and shows abnormalties. Which is indicating this is something to do with her immune system. So they will more than likely start her on steriods again and see how it responds but not until all results are in. And too, she has to be cleared from the cold virus before they can start steriods.
She is still feeling good though, so to see her smile is so comforting! She played her new guitar with the music therapist this morning and just talked and danced!! Such a delite!
Please just take a moment to say a quick prayer for her now if you don't mind. As always we appreciate your support.
Tuesday, August 24, 2004 3:34 PM CDT Another day in paradise! HA...:)
No Gtube today.
I'm getting really worried about her albumim lose. Her urine is beginning to look just like albumin now. We sent some for testing. And her BUN is up to 34. For the last 3 days she has been getting 6grams of 25 times a day for replacement. That just seems alittle extreme to me. And why???? What is going on when she does not absorb any of it?? Please someone tell me! Her level this morning was still too low. Very concerning!
Now our new attending is in service so this week will be very stressful for me. I just feel like he wont listen to me at all. It is so frustrating!
Thank you for your continued support....
Monday, August 23, 2004 1:39 PM CDT The weekend went pretty good, no more fevers and all cultures are still negative. They decided to take her off the antibiotics because it appears to be a cold virus. She still has pancreatitis and is NPO. She has done amazing about not eating! I dont know for sure if she will have the surgury for the g-tube tomorrow because of the cold and pancreatitis, it will probally be postponed.
On a very good note.... Dessy has been smiling and laughing!!! She looks really good, she is gaining weight. Has been playing with her toys and just chipper, which makes me a very happy momma!! It has been too long since she did all that! Makes my heart jump with joy to see her beautiful smile and to hear her sweet little laugh!!
Please pray that it continues!
Friday, August 20, 2004 2:53 PM CDT Destiny and I have had a busy week. She had a scope and biopsy which looked better so they are gonna keep her on a higher prograf level than before.
She had an EEG, that was normal. Went for a MRI but it wasn~t done due to the cough she has had since last weekend, that has gotten worse. She is now having fevers, and difficulty breathing. So they put her on oxygen. Started her on antibiotics. Today she seems to be feeling better.
She also has developed pancreatitis again so she can not eat anything. Which they have decided to take her off the medicine that was helping her esophagus because it was making her output increase, so she cant eat without getting sick anyway!
I had a big care conference with transplant, GI, pedi.surg., doctors and a few others to decide what needs to be done for Destiny. She is scheduled for a G-tube placement on Aug.24. They want to only feed her through that until her output is regulated and she is gaining weight without TPN and Lipids, which could take months... In other words...TORTURE!! Ive said it a million times and Ill say it again....this kid LOVES to eat and to take that one pleasure away from her is gonna break both of our hearts. I have to keep reminding myself that its not them just being mean to her but trying to help her. If we cant get her bowell to absorb and work then the outcome cant be good. They would probally have to relist her.
We need your prayers and support to give us strength and patience...
Thank you! and God bless you!!
Thursday, August 12, 2004 3:43 PM CDT We finally talked with Dr.Kain and they're decision was to wait a couple of weeks and see if taking her off some of the medicines they had started to slow her output down would help with her eating and taking her oral meds. They really don't want to put a g-tube in her because of the tiny area in the donor stomach that it would have to go.
Also I mentioned earlier about the activity going on in her biopsies...it looks like some immune activity that they see with rejection. Just not all the things they look for when there is rejection so they increased her immunosupressants to everyday instead of only twice a week. She will be rescoped on monday to see if there is any improvement.
For her birthday we were able to take a short pass and went birthday shopping! This evening we are having cake and ice cream and a couple of friends over. Which ought to be alot of fun!! I'm looking forward to it, anyway...
Monday, August 9, 2004 3:31 PM CDT We had a pretty good weekend, was allowed to take a pass and go to the hotel and visit with Bryson! Destiny is feeling better. She is eating more. They did restrict her some. We are just waiting to hear from Dr.Kain (pedi.surg.) to see when and if she will get her g-tube this week. Her birthday is wednesday the 11th, I would really like to give her a party outside this hospital but it dont look promising. I will keep you updated as I know more. Thanks for your support.
Monday, August 9, 2004 3:31 PM CDT We had a pretty good weekend, was allowed to take a pass and go to the hotel and visit with Bryson! Destiny is feeling better. She is eating more. They did restrict her some. We are just waiting to hear from Dr.Kain (pedi.surg.) to see when and if she will get her g-tube this week. Her birthday is wednesday the 11th, I would really like to give her a party outside this hospital but it dont look promising. I will keep you updated as I know more. Thanks for your support.
Friday, August 6, 2004 1:57 PM CDT Found out today the gastric emptying study we went for on wednesday didn't go so well. The contrast used just sat in her esophagus. Last night she started feeling better and decided she was ready to eat. Today she ate quite a bit and ended up throwing it all up. I'm so affraid she's gonna be limited so much on what she takes by mouth, which is not good because this baby wants to eat so bad. She has been through so much just to have that pleasure, it just don't seem fair at all.
Thursday, August 5, 2004 2:09 PM CDT We are still inpatient. It looks like there is more going on than just a virus. She has been having fevers and just miserable. She had a scope on tuesday and the biopsy showed some activity going on. Not quite sure what that is. They said its not rejection, so thats good. Today she went for an upper and lower scope and everything looked good. Her esophagus looks great. I was very pleased to hear that. Dr. Peters said she will probally have motility issues for the rest of her life but should improve over time. He recommends her getting a g-tube, but wants it to be a surgeon to do it because of her esophagill problems. So probally next week. Continue to pray for her! We truly need your support. Thanks!
Tuesday, July 27, 2004 3:10 PM CDT Well we have been through so much more since our last update. Destiny ended up in the PICU for the blood clot, it got worse so she had to have a continuous heprin drip for a few days. Her little brother was born July 4th, Bryson. Her leg got better we went back to the shots twice a day, now they are saying she has to get them for 6 months. She got discharged for a few days, then I noticed some sores come up around her stoma and in her mouth. Now she has a yucky virus and is again inpatient. She is very miserable and cant eat. Hope to get her well again soon. It~s time for her to catch a break!!! Thanks for continuing to keep her in your prayers!!
Tuesday, June 29, 2004 5:47 PM CDT Destiny is doing great with the chemo. Her counts are responding very nicely. She should only have 2 more treatments and then she'll be done. The next problem we ran into... Yesterday I noticed her right leg swollen, so we went for an ultrasound on the arteries and vessels of her leg and discovered she has a blood clot right up around the groin area. Another very rare thing for a baby to get!! Imagine that!! So now we will be in-patient for awhile longer to monitor that. She has to get a shot twice a day for about 2-3 months. We can do it out-patient after the swellen goes down and everything else is stable.
Please continue to keep her in your prayers. Thank you!!!
Friday, June 25, 2004 1:41 PM CDT Destiny is back in the hospital. We came in June 11 for a low platelet count. We had to get consult from hemotology and being the rare little gal that she is turns out she has developed what they call "Evans syndrome". Her body is making antibodies that are eating her platelets and red cells. Normally this happens in children that have a spline or can be triggered by some sort of virus but Destiny had her spline removed during her transplant and has not showed any signs of a virus, so we don't know what triggered this to happen. It has been very stubborn though. The first treatment was IV steroids that are still continued as of now but did nothing to bring her counts up. Then we tried IV Immuglobilin, twice. The first time there was a small response but soon gone. The second time, no response at all. The next step in treatment was chemotheropy, and that has showed a very encouraging response in her numbers. It is a very scarry approach, and the side effects are terrifing but it has to be knocked out and we hope and pray it never to return again.... She has done well with the treatments so far she does have early side effects of jaw pain, which is enough to break your heart. With our prayers and all our love she will pull through yet another rare journey!!!
Thursday, June 10, 2004 8:51 PM CDT Well once again it's been a very long time since I've updated. Alot has happened... Destiny had her surgury April 19th, then had a leak in her esophagus and ended up with a second chest tube and back in the O.R. on April 21st. It has been a nightmare since. She stayed in the PICU for a week. And made it to the floor where we stayed until June 4th... The surgury didn't do quite what it was supposed to so she is still on TPN and lipids. And just this week attempting some solid foods. Which so far has went pretty well. While she was inpatient she had re-occuring pancreatitis, and was vomitting with foods with some substance. The last upper G.I. showed not alot of change in her esophagus. I'm just hoping and praying that over time things will begin to open up where they need to and work. That's basically what they are hoping too because of the complications after the surgury they do not want to do anything else for at least 2 months to give her time to heal and see what happens. The pediatric surgeon and the GI doctor have been talking about doing a dilatation on her esophagus. Which scares me to death. We just desperately need many prayers.. This baby has been through so much to be able to eat and she LOVES to eat!!! Again... PLEASE, SEND YOUR PRAYERS FOR HER!!!! Thank you!
Thursday, April 15, 2004 11:01 AM CDT New update...
We were able to be discharged on friday, April 9. And are now readmitted today for surgury scheduled for tomorrow. Destiny has a little cough and a runny nose though, so it may be postponed again! I'd really like to get her passed this and get her to gaining weight again. She has gotten so skinny. Bless her heart. And she just wants to be able to eat again!!!
I am still very worried about the whole surgury thing but trust God will continue to bless this precious child!!
Please continue to keep her in your prayers! Thank you!
Friday, April 9, 2004 1:21 PM CDT Hello to everyone... I know it has been forever since I've posted an update.
Destiny was doing great and we were on our way home by Easter, but we ran into another set back. She now has to have a surgury on her esophagus. She began throwing up at least once a day for about 4 weeks. We altered her medicines around but nothing seemed to make it stop completely. On March 23 we came into the ER with her not being able to hold nothing down at all. Finally we know what was causing the problem. She has a coalation(spazm) of the esophagus. The muscle right above her stomach in the esophagus has come to almost a complete closure making it difficult to impossible for food to go through. So, the solution... Surgury. Next friday she is re-scheduled for the OR. She was supposed to got the operation this past wednesday but was unable due to a fever. Her cultures continue to be negative for an infection, so she was scoped yesterday to rule out rejection. We are waiting for the biopsy results now. If all looks well we will be discharged today and schedule to come back in around wednesday next week.
We need many prayers for a suceessfull operation, thoroscopicly. If it is unable that way the surgeon will have to make a large incision and seperate her ribs. Which terrifies me to death!!! I know with the power of prayer, Grace from God, and the love and support from you all, she will again make it through yet another tribulation!
I will do my best to keep you updated. Much love!!!
Thursday, March 4, 2004 3:51 PM CST This is Christies friend Cindy--i just added some of Destinys newer pictures and thought you might like seeing how good she looks. I talked to Christie a few days ago---i know they are hoping to come home soon. Hopefully she will be able to post soon.
Wednesday, November 5, 2003 1:37 PM CST Well it has been along time... I am so sorry!
We have been in and out of the hospital twice since I last posted anything. We got out Oct.10 and returned Oct.13 with a fever and she had become fluid positive over that weekend. So when we got here they thought with the fever and all that she was in sepsis shock and gave her boluses of fluids which made her lungs wet and we ended up in the PICU on the ventilator. We stayed inpatient until Oct.27 and were discharged again. In the middle of the night we came back in through the E.R. due to dehydration! Her sodium had jumped so far so fast that it was very suspicious to us all. Again we went to the PICU. A wonderful Dr. from there ran tests on the IV fluids Destiny had been attached to since 9pm monday night that came from the home health company. Turns out they had 10x the amount of sodium in her fluids that she was supposed to get. I am very furious and upset about this. An incident report from the hospital has been filed against them and I am in the process of doing whatever I can to make sure this does not happen to anyone else. I am extremely greatful that we did not just go to bed after hooking her up to the fluids. Instead we went to get some groceries for the room and then she became very thirsty and I could tell right away she was not acting right but thought she would be alright soon because now her fluids are running. But instead she became worse so I made that call that we all hate to make. After being out such a short time and already having to call to bring her back in was devasting! But God has blessed us with a remarkable healing. She is doing wonderful now. And the talk is to get us discharged again on friday, Nov.7. With a different home health provider....OF COURSE!!!
She is eating so well and so much today we have stopped all tube feeds!!! And tomorrow we have the test of getting her to take her medicines by mouth and if she does we can take out the NJ tube... Iam so excited about this. I am just amazed at how well she is doing and she looks so wonderful. I can't wait to bring her home to Texas so all can see what a beautiful blessing she is!!!
Well ya'll continue to hold her in your prayers and we will ya'll too!!! We love you all and thanks so much for your love and support!!!
Wednesday, October 8, 2003 3:35 PM CDT WOW!! It is so great to finally be able to come and post an update for myself!!! Not that my friend wasn't doing a wonderful job. Thank you so much, Cindy, you and Mackenzie are such a blessing! To sit here and read all the messages from you all really helped. I can feel the love!!!
Destiny is doing great. We were supposed to be discharged today but was unable to due to her FK level being too low. (immunosupressants). So hopefully tomorrow! I am so ready to get her out of here and show her there's more to do out there! These hospital walls are enough to drive anyone crazy!!!
But we're hanging in there. She looks great! We got the tube out of her nose that was draining her tummy, got her feeds going again. She doesn't really want anything by mouth though. But she'll get there. It's just a matter of time!
Thank you all for your continuous love and support!
Thursday, October 2, 2003 10:40 PM CDT I saw Christy and Destiny once again yesterday. Dessy just doesnt have her spunk back as yet. They were doing a skin biopsy to decide whether or not she has graft vs host disease--but i think it will be Monday before they have results. They are both wore out from this long journey but keeping it together very well. She is going to try and get down to post more often she said--and she looks forward to reading the messages from her friends and family. Please continue to keep them both in your thoughts and prayers.
Tuesday, September 30, 2003 1:18 PM CDT Hi again--this is once again Christie's friend. I saw Destiny yesterday when we were at the hospital too. Her color is so much better. She doesnt really feel all that great right now. She was still throwing up some so they have stopped her feeding for right now and she has a tube back in her nose draining her stomach. She is still requiring some oxygen. They did a CT scan yesterday and found some fluid behind her liver--so they are going to have to follow that. She and Christie are both tired---that hospital can drive you nuts after a while. Please continue to keep them in your thoughts and prayers.
Monday, September 22, 2003 10:45 PM CDT Hi everyone. I just talked to Christie and she asked me to post again for her. They had to move Destiny back to the PICU for low blood pressure---she got some albumin and her blood pressure did get better. But now she is having very high fevers---i think she said 104.7 today. Tylenol helps for a little while but then it comes right back. Her skin in red and Christie said they are thinking she may have graft vs host disease. It will be rough but it can be treated. Dr Jorge feels that she is going to be okay and his feelings mean alot. Destiny also has some fluid built up around one of her lungs--they did a CT today to see how much. If it doesnt get better they will have to drain it because they have already had to put Destiny on oxygen because of it. So, needless to say, little Dessy is pretty miserable and Christie is too. Please keep them in your thoughts and prayers---they are having a rough go of it.
Wednesday, September 17, 2003 7:41 PM CDT Hello---this is Christie's friend again. She called and asked me to post an update since she is having a hard time getting to a computer right now. Destiny is on the floor and doing good. She is having some fevers and they arent sure of the exact cause yet---but her scope today looked great--so it isnt rejection. She still has two tubes in her nose---one to send feeds through and one to keep her stomach empty. Her feeds are at 5cc/hr and hopefully they will be able to increase them soon. Her tummy just needs to kick in. Her bilirubin was up some today but still in the normal range. I havent gotten to see her yet--but i am going to take Christie a camera tomorrow so that she can take a few picture and i will get them developed. Even with the tubes---just to see her not be yellow anymore will be a wonderful sight. Please continue to keep Destiny and her mom in your prayers---it is still a long road from here.
Wednesday, September 10, 2003 11:26 AM CDT Hey everyone, Destiny is doing great!!!!!
Her billi is down to 1.7!!!!! She is tolerating her feeds so far. We should move back to the floor from the PICU today. Every thing is just going wonderfully! It is so exciting. She has been sitting up and excerising. It's amazing how tough this little girl is! God has truly blessed us!
We got a visit from her Grandma Mason last weekend. It was so wonderful having a family member here. Thank you Barbra, we really enjoyed you!!! And thank you to her friends that made it possible by donating their flyer miles... Ya'll are the best:)
Well everybody keep up the prayers and we are so thankful to have you all!!! :) God bless and we love ya'll:)
Thursday, September 4, 2003 3:31 PM CDT First of all... THANK YOU ALL SO MUCH FOR THE PRAYERS!!! A special thanks for my friend that took the time to put an update in for us to let you all know the good news!
Isn't it wonderful?! This is what we've all been praying for and waiting on! It's hard to see Destiny so sedated and on the ventilator but I know this is a great blessing from above. God has heard our prayers and answered them. Now our prayers continue for her to accept these organs and heal and grow wonderfully!
She is doing well today, hopefully she will be able to come off the vent today. It's amazing! Her billi-total for today is 3.2!!!:)All her numbers look good!
To give you more detail of everything...
She went into the O.R. at 5:30am and got into the PICU at 9:15pm. With her blood pressures dropping in the O.R. she received alot of meds. to get them back up. And the surgeons felt it was in her best interest to close her up and get her out of there. There was still bleeding inside that they had to apply sergiseal to. They were unable to connect her colon to her ostomy or put a G-tube in at that time so they decided to give her a couple of days to get her pressures good and get the swellen down before they take her back in for that. Then it was decided by all 3 surgeons that she is doing well enough without the extra risks to go back in. So she does not have the connection to her colon which does not mean that it couldn't happen later but with her syndrome it is unlikely. But I have faith and hope that some day she will not need the ostomy. Now they may have to go in later to put a G-tube. I'm hoping she does well enough that she don't need that either!!
Today she had her first scope(picture of the inside of the bowell, to check for rejection) and it looked great. Alittle swollen is all! Tomorrow we will have the results of her biopsy.
Keep her in your prayers~
Again thank you all so much for all the love and support!!! God bless and we love ya'll!
Wednesday, September 3, 2003 9:56 AM CDT Hi again--this is Christies friend again. I talked to her this morning and she said they decided yesterday not to take Destiny back to surgery. That since she hasnt shown any signs of infection that they felt they didnt need to. So, now they are in the process of weaning her off of the ventilator. That is all very good. Christie will post more as soon as she is able. Please continue to keep them in prayer as well as the donor family that made a very selfless decision in their time of tragedy.
Tuesday, September 2, 2003 8:26 PM CDT Hi everyone. I am a friend of Chritie's and am posting a short message for her as she is pretty busy with Dessy right now. She just wanted everyone to know that Destiny received her Gift of Life on August 28. She received a stomach, pancreas, small bowel and liver transplant. She remains in the PICU right now. She had to go back to surgery today for the docs just to take a look and finish things up as they had to finish her surgery rather abruptly last week because her blood presure was low. But she was doing well today when I talked to them right before she went back. Please continue to keep Destiny as well as her mom in prayer as this is as very difficult time for them. Those first couple of weeks are the hardest. I am sure Christie will post again as soon as she is able. Thank you all for your continued support.
Wednesday, August 27, 2003 3:54 PM CDT We are still doing good. Her belly is draining real well. She has been eating alot. More than she ever has before. Her favorite is macaroni and cheese. So I bought a couple of boxes of EasyMac and she loves it. Tomorrow they will try to put the G-tube back in. I hope she will still eat as good as she is right now! She even drank 2 oz. of formula last night and 80cc of juice this morning! It just amazes me!
Monday, August 25, 2003 3:22 PM CDT Another weekend has come and gone and we're still here doing the same thing...... WAITING... It's enough to drive anyone crazy!!! 16 weeks today! Some days it feels like it's getting easier but somedays it's a nightmare!
Destiny is doing great though. I haven't seen her lab results from today yet. Her G-tube started leaking again last night so today they took it out and placed an ostomy bag over the hole for her belly to drain into. They want to let it do that for a couple of days so the hole will shrink back down to a smaller size. Then put the tube back in and hopefully it won't leak. I don't know, whatever works because her skin is beginning to break out from the drainage.
She's doing well in her walker. She's learned she can scoot backwards. She may be walking before ya know it!
God love her!!!
Friday, August 22, 2003 5:23 PM CDT Well we're ready for another weekend... We had another good day today. She's looking good and being silly!! I don't know where she would get that from... Ha:) She is such a joy. Every moment is precious.
To all our family and friends out there we love and miss you all very much!
Thursday, August 21, 2003 3:06 PM CDT We're having a good day. Destiny is very happy and smiley today:) Every day we walk the floor and go around to say hello to all our friends and today she was just extra happy with seeing them all. She's got a little friend that has been here alittle longer than we have, with the same syndrome that she has. He is waiting for organs too. His name is Reece and a cutey! He needs our prayers also if you could all include him, I know his family would be greatly appreciative. Very nice people!
Destiny's billi was up alittle more today. 18.5. That's bad but better than that 24, I just hope it doesn't climb back up that far. The good Lord willing we'll get another call soon.
Wednesday, August 20, 2003 3:47 PM CDT Destiny is helping me type this one. She is getting mad at me for holding her hands back! I had to put her back in the stroller so I could get this done. Now she's really mad at me!
Other than that she is doing geat today. We went to the playroom and did her hand and feet prints today. Comparing them to the ones in her baby book from when she was a new born is amazing. My how she has grown in a year!!!!:)
Tuesday, August 19, 2003 2:56 PM CDT Well I'm finally getting to do another update... I am borrowing a friends laptop so I can get this in before ya'll start worrying too much!
Destiny is napping right now. She is doing good. I was right about the cold... Her nose and throat cultures showed she had a cold virus. She's still got a little cough but doing and feeling so much better. Now I'm worried about her swelling. Her liver and spline have really began to swell lately. It's getting hard for her to lay down and breathe. I've been propping her up on two pillows. Her abdoman is 22.6" around today. That is so hard to imagine a 1 year old baby that round.
It's been over 3 weeks since we got that call for organs, and every morning I wake up to a new day and pray this will be the day! It's got to come!!!
Wednesday, August 13, 2003 3:30 PM CDT Destiny is doing better today. She had a pretty rough weekend and birthday... Bless her heart. Her fevers went up and down all weekend, she has a cough. Looks to me like a head cold or sinus infection. All her cultures came back negative, thank you Jesus for that!!! We haven't gotten the results from her nose and throat cultures yet. All of her blood work monday looked crazy so they wanted her to get blood and platelets which they had to put an IV in her for that because of her sugar problems we couldn't use her central line.
But she actually slept good last night and in her bed. From friday up till late yesterday all she wanted was for me to sit and hold her. That's why I'm just now getting to put in an update. She's here with me right now but coughing so I better get her back to the room. Before I do let me tell you about her birthday party!
It was good besides her being sick. She had a pretty Care Bears cake and a small one for her to play in. She didn't know what to think about getting her hands dirty though. She just wanted to tap at it and poke it alittle but I took her hand and smushed it in it. You should have seen the look she gave me!!! She got alot of very nice presents, all the nurse's and other mom's from the unit sang "Happy Birthday". By then she was so sleepy and cranky she went right to sleep!
Friday, August 8, 2003 2:48 PM CDT It is so scarry how things can change so quickly...
We had a horrible night.. She now has a fever, she didn't sleep all night, she just whinned and whimpered all night.
They drew blood cultures, urine cultures, we're still waiting to go down stairs for a chest x-ray, and they consulted the dental department. And they started her on antibiotics in case of infection. She is so miserable, it's so hard seeing her like this. She's always so happy and playful but today she don't want anything to do with anyone.
Bless her little heart... I'm praying it's just her teething. When denistry comes in, they should be able to tell. It'll be tomorrow before we get any results on the cultures.
I will update again on monday to let ya'll know how the weekend goes. Keep her in your prayers!!! Thank you!
Thursday, August 7, 2003 3:30 PM CDT I am so sorry I haven't been updating the way I should be. I've been having a problem getting a computer lately...
We are doing good. Destiny is doing great. Her billi is slowly coming bask up though. She is now on a new medicine that helps her with acid reflux so she is starting to eat again. She likes cheerios! And she doesn't get choked on them anymore. Those 4 teeth are helping out alot!!
I am so excited about her birthday coming up. One of our nurses is going to pick up a cake on her way in and we're gonna let her go to town on it! We'll have her a little party on sunday because the hospital isn't so full on the weekends. I really wish our family could be here to help us celebrate:(
Friday, August 1, 2003 4:44 PM CDT Not too much is going on, Destiny is doing fine. She's growing up so fast! All of a sudden she don't look like a little baby anymore, she looks like a toddler. It's hard to beleive she will be a year old in just a few days. Lately she has decided she's not supposed to sleep at night... She's waking up in the middle of the night wanting to play. My silly girl!!
Thursday, July 31, 2003 3:42 PM CDT Destiny is doing good today. She's talking alot. She's been calling "Moma" all day.
We got her G-tube changed out monday evening, so far it is draining ok but she is still not eating anything and spitting up every so often. I don't know what to do... The doctor that was here all this week didn't want to start her on anything for it, for some reason.
I just wish for some relief around her... it's been along time coming!!!
Monday, July 28, 2003 3:45 PM CDT First I would like to say thank you so much for all the prayers and love we have received from you all!!!
Secondly... We had a very exciting weekend but disappointing too. Friday night we had a call for potential organs for Destiny. I was so excited and just knew it was her time to receive her gifts. But the transplant surgeon said it was a good size for her but the intestines wasn't no good. So we continue to wait for the right ones... My hopes and spirits are up now for sure!!! They told me she is top of the list nation wide because of where the call came from and they are getting more and more calls for her. It just depends on size and getting good, healthy organs. I know He is hearing our prayers now!!!
Also, her labs today showed improvement on her billi-total...13.4!!!!! Praise God!!!
We are going to change her G-tube this evening. We're going back to a regular G-tube instead of a Mic-key button, so hopefully that will solve that problem.
Have a great day and God bless!!!
Friday, July 25, 2003 6:15 PM CDT Today has been ok, with no changes. Destiny is still her happy playfull self. We went to the playroom today, twice. She loves to go in there and be the center of attention! And when she's not the center of attention she's watching everyone else. Her billi went down alittle more... Thank you Jesus!! We are just hanging out and hanging on, hoping for a good weekend! God bless you all and much love from Dessy and Me!!!
Wednesday, July 23, 2003 3:38 PM CDT We are still in the hospital and the transplant surgeon strongly suggests that we keep her in so she will remain a status one. Because even with her being the only listing in her catogory, organs that would be right for her could go to someone else that is a status one listing. So I will tough it out!!! I would love to get her a couple hour pass to go to the zoo or park though... if at all possible! She needs a break too:)
This week her billi-total has gone down a tiny bit but the itching and irritation has remained. She has started having problems with her new G-tube again. I think it's probably due to her wanting to eat solid foods so much:)And of course I can't tell her no!! ha..ha..
Friday, July 18, 2003 4:48 PM CDT Destiny hasn't quite been herself the last couple of days. Her billi-total has went up again, her itching has gotten worse. She had to have benedryl again last night and still woke up in the middle of the night crying and scratching. She had blood all over her from a spot she scratched on her ear. Scared me to death.
I spoke to the doctors today about possibly discharging us to the Pittsburgh area. They seem to think it may be a good idea but we'll weigh it all out and talk more about it on monday. She will loose her status but in her catogory she is the only listing so we'll have to see if it will make a difference. I'm thinking that when it's time for her to receive her gifts, it doesn't matter where we are.. God will take care of her!
If any of you have any feedback or knowledge of how this all works that you would like to share, please feel free to e-mail me at dessynme@hotmail.com
Thanks for your love and support:) Have a great weekend!!
Wednesday, July 16, 2003 3:43 PM CDT Sorry I was unable to update yesterday. I have to wait until Destiny comes off her TPN before I can bring her in the library with me and yesterday she did not like sitting here while moma read the guest sign in, then the library was closing so we had to go...
But she is doing fine. Last night while bathing her, she would not quit scratching all over her chest, pulling at everything; so I mentioned it to our nurse and I learned that when your billi gets high it makes you itchy, so that's why she's been so handsy lately. We gave her some benedryl and it helped a little. Her sugar has been dropping alot so we're constantly checking d-sticks and she has to be on some fluid at all times. Other than that and fussing with her teeth, she's doing good... Very talkative too.
We're missing our family and friends and hope to send good news soon. God bless!
Monday, July 14, 2003 2:46 PM CDT This weekend was very painful... A dear friend that I made since we've been here lost her son sunday night:( He was waiting for transplant also, so you can imagine the impact this had on me. To see her have to go through that was horrible and me being a mother of a child waiting also made it even harder. My heart goes out to her!
As for little Miss Destiny she had a pretty uneventful weekend... She got to go outside and we sat in the grass and watched the birds. She is completely fascinated by them. And she likes being outdoors.
She got a new G-button friday evening and so far it's working fine. I'm being very picky about what she eat's now though because I don't want it to get stopped up again!
Today's labs have me worried; her billi has gone up again. It's now at 22.6, where just a week ago it had gotten down to 15.1. I pray God will keep her well until she gets her transplant.
Friday, July 11, 2003 5:57 PM CDT ***MY ANGEL IS 11 MONTHS OLD TODAY!!!***
Destiny had a positive culture come back today for an infection around her central line site, so she is now on antibiotics for that. They've decided she has outgrown her G-button so the surgeons are supposed to come change that out today and put a bigger one in... It has been a very stressful day!! But she's happier than she was yesterday, so that's good.
Let's pray for a better weekend***
Thursday, July 10, 2003 3:04 PM CDT Sorry about the mistake in yesterday's message, my words just don't seem to come out right these days!!!
Today has been alittle rougher. Destiny's labs came back with a higher billi-total. She's actually been going down since we've been here, and now all of a sudden back up almost to where she started when we got here. And she's teething so she's been fussy. Bless her little heart! Please keep the prayers going up for her to receive her gifts soon!!!!!!!!! Thanks and God bless...
Wednesday, July 9, 2003 3:59 PM CDT Destiny is doing good. She is still the happy little girl she has always been.
On monday July 7,2003 she was baptised. It was a wonderful experience and such a blessing.
We continue to pray for good news to come soon!!
Special thanks to all who have visited her site and prayers to ours!!!
Wednesday, July 9, 2003 3:59 PM CDT Destiny is doing good. She is still the happy little girl she has always been.
On monday July 7,2003 she was baptised. It was a wonderful experience and such a blessing.
We continue to pray for good news to come soon!!
Special thanks to all who have visited her site and prayers to ours!!!
Wednesday, July 9, 2003 3:48 PM CDT Destiny is doing good. She's just as happy as she's always been...
She is such a beautiful blessing.
On monday July 7,2003 she was baptised, it was a wonderful experience.
We pray for good news to come soon!
Friday, July 4, 2003 9:27 AM CDT Destiny Cheyanne was born August 11, 2002 with a very rare syndrome called Megacystic Microcolon Hypoperastalsis Syndrome (MMHS) which caused her stomach, intestines, and bladder not to function correctly. Due to her inablilty to digest food or urinate properly she underwent her first operation at only 5 days old. She has been on TPN and lipids since birth, which has caused liver damage.
At three months old she was listed for a multi-visceral transplant, which consists of the stomach, small bowel, liver and pancreas.
In May 2003 we were transported from Texas to Children's Hospital of Pittsburgh to wait for organs because she was having so many problems related to her liver damage.
Destiny is a very happy, loving little girl with beautiful smile and lots of laughs. She adores attention from anyone and loves dancing to the music. Please keep Destiny in your prayers. Check back at her site for updates and sign her guestbook if you have time.
Click here to go back to the main page.
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