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Click here to go back to the main page. Sunday, December 31, 2006 4:24 PM CST Happy New Year!!!
Friday, December 29, 2006 1:45 PM CST Okay....so we did not escape traveling to Dupont this week. This morning John went to Dupont to have a chest x-ray done. John does have fluid accumlating in the left lung again. On Tuesday we are going back to Dupont to have the lung drained again. We rushed back to Reading to go to a Reading Royals game only to drive around for 1/2 trying to find a place to park. Every lot that we went to was full. With all of John's baggage we can not go to far away because it is alot to carry for blocks. So after a half hour of looking, we decided to go home with a VERY disappointed John. Every time he has tried to go to a Royals game the past 2 years, something with his health has interfered.
Wednesday, December 27, 2006 3:58 PM EST John is feeling better. It looks like he just had a cold and we have been able to manage things from here. However, we are having trouble with the port again. They have not been able to draw labs from his port. The nurse tried yesterday and twice today. They are going to try once more tomorrow and if they do not have any success we will have to go to Dupont to have the port checked. At least the port is working enough for him to receive all of his fluids and TPN. I think John just likes taking trips to Dupont every week (NOT). We have also had alot of trouble with the dressing this week and have had to change it frequently....just another frustrating week in the Maicher house.
Tuesday, December 26, 2006 8:36 AM EST Merry Christmas to everyone. We hope that everyone had an enjoyable holiday. John really enjoyed being home for Christmas and has had a busy few days. On Friday night he started his Christmas celebrating with having all his friends over for a Christmas Party. They were a lively bunch and still going strong at 3:00 in the morning. But as usual he is now paying the price. On Sunday John started running a low grade fever and complaining of shortness of breath on the left side again. His 02 stats are down a bit also. I started giving him tylenol for the temp and we managed to get through Christmas at home. I'm not sure if we will be heading to Dupont again this week, but it does seem like John has fluid in his chest again. When is temp goes up, his breathing becomes harder. I will have to call Dupont later today and see what they say.
Friday, December 22, 2006 6:08 AM CST This has been a busy week. We made the long trip to Dupont on Tuesday to have John's port TPA'd only to find out when we got there that the port was working fine. So we traveled back home and waited for the nurse to come to draw his labs.
Monday, December 18, 2006 8:08PM EST Somedays you feel like you just can't get ahead and this was one of them. Every Monday John is due to have his port needle changed and his labs drawn. So today when John's nurse came we were all set up to do this.....but as usual John's body decided to give us trouble. After two attempts to draw back blood from his port, the nurse said lets change the needle and see what happens. She tried twice to change the needle and each time could not get a blood return. His fluids however were able to go into the port without any trouble. The verdict is that John needs some TPA (Blood clot buster) put into the port. We thought our visiting nurses would be able to put the TPA in, but they can't. Fortunately the port is working enough to give John the fluids that he needs. So tomorrow we are once again off to Dupont where they are going to TPA the port. We have two hours to get home and the nurse to show up and draw back the TPA and try to do John's labs. While we were trying to figure this all out, John's TPN, hydration bags and antibotics still needed to by run...plus today was the blood drive and health fair. I managed to get John over to the blood drive where he did have a nice time talking with people, some he knew, some he didn't.
Friday, December 15, 2006 12:27 PM EST We are coming home later today. Yesterday John had a brochial scope done which showed normal lungs...they were nice and pink and showed no problems. When Dr. T did the needle tap he removed 120cc of fluid from around John's left lung. That fluid is being tested to see what is growing in it to cause John the infection. John feels alot better since they removed the fluid from around his lung and is breathing alot better. The doctors feel that we do not need to be here why we wait to see what the sensitivities are. They are going to send him home on the two antibotics that he is on down here. If the the fluid shows that he needs to be on something else, they will bring us back to day med and give him a dose of the new medication. We will just have to wait for the results. In the mean time John is thrilled to be coming home...he has alot of things going on next week.
Wednesday, December 13, 2006 8:52 AM CST ********UPDATE******* 5:00PM EST
Tuesday, December 12, 2006 1:26 AM EST Today is our 9 month anniversary from transplant......
Friday, December 8, 2006 7:35 AM EST We are off to Dupont this morning to have a chest x-ray done. John has been coughing so much these past few days. He is also very tired....sleeping more during the day. So since we are heading into the weekend, we are going to have the chest x-ray done to make sure the left lung has not gotten any worse. He is done one of his antibotics and the other is done tomorrow. During the evening his temp has gone up to 99.9. John of course is worried because he does not like sleeping so much. I'm afraid from all the coughing he is going to pop a rib. I will update after we get the results of the x-ray.
Tuesday, December 5, 2006 3:24 PM EST John is doing okay. I think he might have over done it the past few days and now he is feeling punky and tired. He has been complaining of discomfort in his back on the left side today which is where the pneumonia is. His weight I am happy to report is up to 114.5 John has not weighed that much since the summer, so everyone is pleased with that. His labs from yesterday were good, his total bili and direct bili are up again, but everything else is doing okay.
Friday, December 1, 2006 8:53 PM EST They discharged John tonight. We got home here between 6 and 6:30. It's been non-stop since we got in....we had to hook John up to everything. He came home on two antibotics. He received one of each doses at the hospital today before we came home and then we gave him the second dose of the one tonight. John is glad to be home. All of John's liver numbers are just about back in the normal range. The GGT is being stubborn, but the total bili and direct bili are really great. Infact the one surgeon said he could not believe that John's numbers were so good...that he was impressed and he's not easily impressed. John lost alot of weight while he was in the hospital this past week...down to 105, so we lost ground with the weight, but hopefully we can get him back on track and get the weight back up. Thank you for your prayers.
Wednesday, November 29, 2006 2:27PM EST Sorry for the delay in updating but I wanted to wait until I had the facts from the doctors. It turns out that John has a double whammy.....not only is the port infected but he also has left side pneumonia, which explains the pain on the left side. We are waiting for the sensitivities and then can go home...most likely tomorrow. John's temp is back to normal and he feels alot better. If he could get rid of the cough he would feel great. We will do antibotics at home..nothing we have not done before. I'm glad that we bought John in and that he is getting the treatment he needs. Thanks for the prayers.
Monday, November 27, 2006 6:47 AM EST *****UPDATE******7:45 PM EST
Wednesday, November 22, 2006 7:34 AM EST John contiues to have the discomfort in his left shoulder and lung area. Last night was the first time since Sunday that he did not have a fever. I was on the phone a few times yesterday with transplant and GI. John's TPN got messed up yesterday and he ended up getting his TPN over 5 hours instead of 8, because of that I had to give John some extra fluid. He is having a culture drawn today from his port to make sure there is nothing growing that could be causing the fevers. I was hoping when we got the results of John's labs that they would have shown something, however, his labs were GREAT! The thought is that maybe he has a bacterial infection. We'll just have to wait and see. John also has been having alot of discomfort around the baby fistula. He has been passing alot of gravel, which is painful.
Monday, November 20, 2006 8:13 PM EST Thank you to everyone who came out to the Pancake Breakfast on Saturday for John. It was nice seeing and talking with people we have not seen in a while. It has been a busy weekend for us. On Saturday, after the breakfast Albert ended up having a Sandy day. He took John to St. Joseph's Hospital to have his x-ray done of the shoulder. Saturday John said that it was hurting a little to breath. So off they went to the hospital. While they were there John started leaking. Luckily the staff gave Albert gauze pads to help control the leak until it could be fixed. They left the hospital,and were on their way home when John realized that his high school ring was missing, so Albert turned around and went back to the hospital. Leaving John in the car because he was leaking Albert headed back to x-ray and looked all around. He could not find it so he filled out a report and went back to the car. Of course John was very upset about this. For some reason John reached into the hood of his sweatshirt and guess what....there was the ring. He must have put it in there when they did the x-ray. Anyway...all of that was enough to stress Albert out. When they got home I was able to patch the dressing so we did not have to change it until Sunday. Sunday turned out to be another interesting day. John started running a low grade fever....100.3. His shoulder was still bothering him but his breathing was better and he said he felt better. Today John's labs were drawn and we will have to wait until tomorrow for the results. He is still running a low grade fever. I spoke to transplant and the thought is that as long as it doesn't go over 101 they want to ride it out and see what happens. They said that if there is something going on it will eventually show itself. We have not gotten the results of the x-ray yet, hopefully we will get the results tomorrow with the labs. Even though John is running a low temp, he says he feels good, just a little tired. I hope we can find out what is going on. John is already worried that he is going to be spending another Thanksgiving in the hospital.....I'll keep everyone posted.
Friday, November 17, 2006 7:12 AM EST Giving John the extra fluid on Tuesday really helped. By dinner time he was back to himself. He was chatting up a storm. Check out the pictures from that night and you'll see Albert's reaction after an hour of non-stop talking and how John reacted to his dad.
Tuesday, November 14, 2006 2:42 PM EST John has not been feeling well the past 4 or 5 days. He says he just feels off. He has been real quiet and not really wanting to do anything. I received his labs this afternoon and there are some flags being raised with them. One his bili is elevated, and his ggt is up. The craziest thing is that John's ammonia is up. His is 47 and normal is 35. The only reason an ammonia level was run was to please John. We have not had an ammonia level drawn in a long time. Ammonia level goes along with the functioning of the liver. John's ammonia had been normal after transplant. I will not be able to talk to anyone in transplant until tomorrow since they are at seminars. Today John's heart rate is high also....so with all this going on we are giving John an extra liter of fluid to see if John might be a little dehydrated. His output from the fistulas has been up the past few days also, so it is a possiblity that he needs some extra fluid. Let's hope John can get over whatever is going on with him and get back to feeling great.
Friday, November 10, 2006 8:00 AM EST Well I have not had a night like I had last night for a long time. Al was out and it was just John and I...everything was going great...and then...John said he needed to go to the bathroom so I picked up the pump and bags and we headed to the bathroom. Next thing I hear..."Oh no..I'm leaking" so..I took him back to the living room where his bed is and attempted to plug the leak. I thought I had it fixed so I took John and his stuff back into the family room so he could finish watching his movie. I go to start getting his 12 hour overnight bag ready. One of John's pumps starts beeping..I go and disconnect it, do what I have to with the bag and go back to the 12 hour bag. I no sooner finish with the 12 hour bag when John's other bag that was connected to him finished. I went and disconnected that. While all this was going on I was trying to have a conversation with my mom on the phone. It was while I was talking to my mom that I remembered that I had to finger stick John to check his glucose because we have been having some sugar issues with the TPN. I hung up from my mom and went to check his glucose. Just finished that, when our supply delivery came. A weeks worth of IV fluids and TPN was delivered. I spent some time in the garage trying to get everything to fit. Plus we got new IV pumps that we are to start using today...I have to learn how to use them. I just finished putting everything away when John's movie was over and he wanted to go upstairs for a bit. As he stood up...you guessed it...stuff came pouring out from his dressing....the patch did not work....so back to the family room we went and I had to do a complete dressing change....by this time I think I was ready to lose it....but I kept going. John was a complete mess and needed to get into the shower. I got him up to the shower and ran back downstairs to get his supplies ready for a dressing change. When John was finished shower and getting dried off we heard the best sound of the night...."hello...where are you guys"...Al was home!!!! Needless to say I pounced on him and he had to drop everything and jump right into helping me with the rest of John's dressing change. John said "boy we have not had a night like this for a long time, I guess we were overdue". John was then able to go upstairs for a while all though his feeding pump kept beeping....the next thing I know 2 1/2 hours had gone by....
Tuesday, November 7, 2006 10:20 AM EST John continues to feel good. His labs from yesterday were great. Just about everything is in the normal range or close to normal. John said to his dad and me yesterday that he is noticing since the transplant that he feels smarter and more coherent. He said it feels great to wants to get out and do things and especially get back to taking classes. Yesterday we registered John for his spring on-line classes. We are waiting to here from one of the professors because John needs special permission for one of the classes because he is 1.5 credits short of the required credits needed to take the class. As of right now, John is still scheduled to go back for surgery the end of January. The spring semester starts January 15, he wants to be able to have time to contact his professors before going to surgery.
Friday, November 3, 2006 11:52AM EST John is having a good week. He has gained 3 lbs as of today. We'll see how he does tomorrow and Sunday since he will be off the TPN for 2 days. Yesterday was able to go up to Kutztown University and spend time with his friend Jay. He really enjoyed himself. We have been having alot of skin issues again around the baby fistula. The skin has been broken down now for the past week. We are changing the dressing every other day again, but it does not seem to be healing. I think part of the problem is that John has been spending more and more time off of suction and stuff is getting under the dressing and irritating the skin.
Tuesday, October 31, 2006 3:13 PM CST HAPPY HALLOWEEN!!!!
Friday, October 27, 2006 8:16 AM EST This week just seemed to fly by. John started the TPN on Tuesday and at this point is still losing weight...all time low 103lbs. John is starting to get frustrated with all the weight issues. John decided that he wants the TPN to run Sunday through Thursday, giving him Friday and Saturday some freedom to go out and do things. It never ceases to amaze me as I watch John just how much courage he has. Yesterday he went to the elementary school to help with band. As I watched him walk into the school, I thought to myself...what a guy...he had his feeding pump on his back, his TPN bag..which is big over his shoulder and his drum sticks and he walked into the school as if it was nothing to be carring all his things. We went to Millersville on Wednesday and met with John's academic advisor. Everything went well down at MU. One of the first things his professor said to John was how healthy he looks now. That made John feel good. So John has the clearance and is ready to register for spring classes which he will take on line since he will be in the hospital for at least 6 weeks of the semester. John really hopes and is planning to be back at MU in the fall as a full time student. Our biggest issue is to pray that when they try to close the fistulas that the surgery is successful and we do not get more fistulas from trying to close the ones we have now.
Monday, October 23, 2006 8:06 PM EST Tonight the dreaded TPN was delivered. John will start the TPN tomorrow morning. To start it will run for 12 hours during the day and we will work our way down to 8 hours. Because he has not been on TPN for awhile, he will have to check his sugars 3 hours after the TPN starts and 1 hour after it comes off. He will be on the TPN 5 days and off 2. As he gains weight they will shorten the amount of days he needs to be on it. John is not happy about this, but he knows that he needs to gain some weight. His labs today were good....the liver is happy :) He has been spending more and more time off of the suction machine and has been enjoying his freedom in the house to do whatever he wants to. He has alot of energy and as transplant told me today with the TPN he will probably have MORE energy.
Friday, October 20, 2006 7:57 AM EST John has had a good week. He feels good and has been able to stay off suction for up to 7 hours, which makes him feel good and the house VERY quiet. He loves his freedom from the machine. The reason he has been able to stay off so long is because his abdominal dressings are holding better and longer. He has been down to the elementary school twice this week to help out with band and enjoying being able to spend time in his own room.
Tuesday, October 17, 2006 6:23 AM CDT Yesterday's visit in transplant clinic went well. John will be going back to surgery mid-January. The beginning of January testing needs to be done to try and see where everything is and the surgery will be scheduled. He was told to expect to be in the hospital for at least 6 weeks. John is very pleased with this decision. It is everyone's hope that the fistula's can be closed without causing additional ones :\ Dr. D and Dr. T told me that I was doing a great job on John's belly and to keep it up. They were very pleased with what they saw. John also needs to get some weight on him before surgery so what to do was being discussed in the weekly meeting that transplant has with all the "key" players every Monday. By key players I mean, surgeron, nutritionist, GI, & hepatalogy. John's numbers were up slightly, but still good for the transplant department. I know that John just passed some additional stones because you can see the gravel in his fistula bag which would explain the color change in his drainage the past few days. Today the drainage is looking much better. I will post when the decision is made as to what to do with John for extra calories.
Friday, October 13, 2006 11:01 AM EST John continues to feel good. He has been staying busy and getting out and doing things that he enjoys. His weight dropped to it's lowest yet....104.5 The talk is putting John on some TPN just over the weekend to give him some extra calories. John is not too keen about going onto TPN, but also realizes that he can't keep losing weight. John is getting some questions together for Monday to help decide what to do about closure of the fistuals. John is afraid of having more surgery because he knows how much trouble he had with transplant and the fact that he is still having some low blood pressure issues, but he also knows that they have to be surgically closed...the question is when is the best time to do this....
Tuesday, October 10, 2006 1:55 PM EST John is doing good.....his weight continues to go up and down depending on his activity, which right now has been high so the weight is down. His labs from yesterday were good and everyone continues to be pleased. We are staying put at 78cc an hour on the feeds, with the possibility of making some changes next week. On Monday we will be heading to Dupont to see Dr. D and talk about John's future. John has a very big decision to make and alot to think about before Monday. I am asking for everyone to say a special prayer for John as he thinks about all the options that he has and that he comes to a decision that HE is comfortable with.
Friday, October 6, 2006 8:20AM EST Everything has been good here. John feels good and is just itching to get out and do things....so that is exactly what I have been doing with him. Yesterday we spent a few hours at the blood drive, today he will be with the elementary band, tomorrow is DB homecoming and sometime this weekend his buddies are taking him to the movies. I had one person say to me that she has not seen John this good and so full of energy since 10th grade. Now if we could just do something about the fistulas.... Where they put in the new port-a-cath is still very sore and sensitive. Today he will get the needle changed and we can take a good look at the site.
Tuesday, October 3, 2006 12:17PM EST John is doing great. I received a call this morning from Dupont with his weekly labs. I am happy to report that John's Total bili is down to 1.9 (normal is less than 1) and his direct bili is down to 0.9 (normal is less than 0.5) both his AST & ALT enyzmes are normal at 29 and 30 and best of all his GGT is 80 (normal is less than 50) We are so pleased with these numbers. It really looks like the stone in the bile duct caused his numbers to go up. His new port-a-cath is doing okay; still painful but is working fine. John's weight is holding at 108 and his feeds have been increased to 78cc per hour. Now if we could just do something about the fistuals. No word yet as to when they plan on doing anything with them.
Saturday, September 30, 2006 8:42 PM EST We are HOME!!! Everything went well yesterday, John has a new port on the other side of his chest. They gave him one more dose of the heavy duty med for yeast and told us we could come home this morning. Of course now with the port on the other side we had to re-arrange everything at home so that all of John's lines and tubes would not get all tangled up. John's blood pressure is still running really low so we have to monitor it closely for the next few days. Good news...John's weight is up 3 lbs to 109...He feels great and I can tell because he has had the gift of gab for the last few days....labs on Monday so we will see how the liver is doing.
Thursday, September 28, 20069:17AM EST ******UPDATE*****8:20PM EST
Tuesday, September 26, 2006 5:14PM EST This has been a busy few days. Yesterday I received a call from Dupont saying that John's port grew yeast again so tomorrow John is being admitted to Dupont to have the port pulled. We have to wait a few days before a new one can be put in so we were told to plan for 5 days. Our feeding pump had been acting up all weekend but yesterday was the worst, just about every half hour the pump would start beeping saying that the bag was empty when it wasn't. By 7:30 last night I could have hugged the guy who bought us the new feeding pump. Also yesterday John lost 2 pounds bringing him down to 105.5 lbs. The good news is that today he gained a pound of that back. His labs that were drawn yesterday also were good....his total bili stayed the same at 2.5, but the direct is down to 1.1, his ALT & AST (which are liver enyzmes) are normal and his GGT which has been so high for so long is down to 101....of course it still has a way to go, but I don't think we have seen that since April. If we could only get his weight up more...
Saturday, September 23, 2006 7:48 PM CDT We have had a few interesting days. Al & I actually got the chance to go away for 2 days for some much needed R & R. We went to Ocean City MD with friends of ours who were already down there. John was left in the care of my wonderful mom who was brave enough to take on the challenge. The first day we were away started out really good....later in the day I received a call from John saying that Dupont called and said that he had to come down on Friday to have another culture drawn from his port-a-cath and a culture from a peripheral vein. His cultures from last weekend have come back showing yeast so they are not sure if it is just in his line or in the blood....the thought being since John looks so good that it is just in the line. So here we are many miles away....Dupont said for us not to come home and my mom backed them up. So on Friday, my parents and John headed to Dupont to have the cultures drawn. We should have the results on Monday. As for Al & I the two days we were away flew by, but we did have a good time. John's weight is holding steady at 107.5 lbs....he really needs to gain some weight, but for the last 3 days he has not lost anymore. Please say some prayers for some weight gain.....
Wednesday, September 20, 2006 2:49 PM CDT We are getting into our routine with John's round the clock meds. John is looking better and better everyday. I am asking people to pray that John starts to gain some weight. Now that he is feeling so good and is more active he is just burning up everything we give him. His weight is now down to 107lbs. I spoke with transplant today and we have increased the cc per hour of the formula he is getting now....and they were going to talk to the nutritionist. John really needs to gain weight..... Thanks
Monday, September 18, 2006 6:50 PM EST Just a brief update. We are home. They decided to let John come home and if anything else should show up on his cultures they will call us. They sent him home on penicillin every 6 hours round the clock...so we are trying to get him on a 6,12,6,12 schedule. Dr. D was really impressed with John's belly and has decided to leave him status quo for awhile and see how much more healing John will do on his own. So when we are going back to surgery is still up in the air.
Sunday, September 17, 2006 8:41 PM EST We are still at Dupont and we are not sure if we will get out of here tomorrow as we had hoped. John's blood culture from yesterday grew bacteria again in a 24 hour period. This time they were able to identify the bacteria and medicine had to be changed. The one antibiotic that was on this bacteria is resistant to...so now John is on gentamicin and a high dose of penicillin. Another culture will be drawn tomorrow. The doctor is not sure how John got the particular bacteria that he has. John's weight continues to be an issue having lost more weight from yesterday. Tomorrow the nutrition department will get involved. Also tomorrow the docs want to check his belly. I think they will be pleased with how it looks especially since they have not seen it since the beginning of August. I hope that we can get out of here on Tuesday.
Saturday, September 16, 2006 2:54 PM CDT Sorry it took so long for me to update, but I wanted to make sure I had all the information. John's port culture did grow bacteria so we are at Dupont until at least Monday. They drew another culture today and if that does not grow then we know he is on the right antibiotics. His labs when we went in on Thursday night were all up, but as of today they have started to come down. John said that he feels great now. On Monday Dr. D wants to look at John's belly so maybe we will have an idea as to when we will be going back to surgery. One problem that John is having is his weight. He can't seem to gain weight. He just keeps losing and John does not have much room in the weight department. He really needs to gain about 10 lbs. Wish I could give him some of mine :)
Friday, September 15 , 2006 9:10AM EST We were admitted to Dupont early this morning. We arrived in the ER around 10:30 and made it to a room around 3:00 AM. They are checking John for a line infection. We should know more later today.
Tuesday, September 12, 2006 10:52 AM EST HAPPY 6 MONTH ANNIVERSARY LEO LIVER
Saturday, September 9, 2006 8:14 PM EST We have had a busy few days. On Thursday I spoke with transplant and they gave me the new combination of formula to start giving John. They were going to start out slow because they did not want to give him the runs. On Friday we started the new formula and things looked like they were going well...WRONG by this morning John was in so much discomfort and I noticed that his feeds were spilling into the canister. In talking with John he informed me that he had not gone to the bathroom all night. So I stopped the feeds and later in the morning we called Dupont. They could not believe that John was having the opposite problem then what they thought he would have. So I was told that he could stay off the feeds for awhile until the cramping stopped and then start the feeds up but with a different mixture. I am not sure if we will start them tonight or wait until tomorrow morning.
Wednesday, September 6, 2006 7:10AM EST ***UPDATE***
Friday, September 1, 2006 7:25 AM CDT I spoke with transplant yesterday and Dr. K from Jefferson University told them that he wants John to have the ERCP done. This procedure flushes out the gallbladder and bile ducts. I pray that this takes care of John's bile duct issues and our bili can start to come back down. I also scheduled an appointment for John to be seen by transplant to have the wound checked. Because John has been having some trouble around the wound I think it should be checked just to make sure nothing serious is going on. By the time we are done with John's open wound I will be a master in wound care without having to have the education to do it :)
Wednesday, August 30, 2006 8:06 PM EST This morning Dupont called to say that they have not forgot about us, but the doctors from Dupont and Jefferson have been playing phone tag. I hope to hear something before Friday as to what they are going to do with John. Right now John has an area around "baby" fistual that is hard and very sore. If I can not get the area in better shape I will have to call Dupont and have them check the area. John feels good though and I am starting to look for things for him to do.....too much time playing video games :) He has energy and wants to do things. As soon as I hear from Dupont I will post again.
Monday, August 28, 2006 5:17 PM EST I just got off the phone with Dupont. John's labs today were actually better than last week....except for both bili's. The went up, but not a big jump. The crazy thing is that his GGT is the lowest it has been in months. They are still waiting to talk to the doctor at Jefferson to see if they can do anything. They also are thinking about doing a liver biopsy. John also has an area around one of the fistuals that has been bothering him and it is sore to the touch so they are going to want to see that also. Prayers are working....thank you!!!!!
Thursday, August 24, 2006 10:23PM EST Not to much happening here. I have not heard anything definite from transplant on what is next for John. I did hear that Christiana Hospital questions whether they can do anything and are waiting to see what Jefferson says. John continues to feel good though and is full of spunk. I have kept his feeds at 75 cc an hour for another day to give him more time to adjust. All I can ask everyone at this time is to keep saying prayers for John that he can continue to heal and keep the liver that he has.
Tuesday, August 22, 2006 7:04 AM EST *****UPDATE****** 11:30AM EST
Saturday, August 19, 2006 8:37 AM CDT Our trip to Christana yesterday was uneventful...no leaks...no pumps beeping...it was nice for a change. Also we managed to get three days out of a dressing change..that alone is enough to celebrate. We will not get the results of John's test until Monday. John is also having labs drawn on Monday....so it looks like Monday will be a nail biting day. John is also doing well with the increased feeds so if all goes okay we will increase the amount again tomorrow. Hopefully with all the extra calories he will gain the 4 pounds back that he lost. Please say some extra prayers this weekend that on Monday we get some good results.
Thursday, August 17, 2006 3:10PM EST Tomorrow John and I are heading to Christana Hospital in Delaware to have the MRCP done. This should give the doctors a better picture of John's bile ducts. Please pray that we can all keep our sanity during these next few weeks while testing is being done to check on the health of John's new liver.
Tuesday, August 15, 2006 6.00 PM EST This has been a tough two days. Yesterday when we received John's lab results all of his numbers were up. That was really hard to take being as John looks and feels so good. Today was our meeting with the transplant team. All three of us, Al, John and myself came out of the meeting feeling pretty bummed. Before surgery will be planned, testing has to be done to the liver to see how it is doing. With John having the hepatic clot most likely he will need to be re-transplanted somewhere in the future. As to the fistuals there is no guarantee that they will be able to close the fistuals or even close them without causing new ones. It will be a very tough surgery, which is why they want to check the liver...specifically the bile ducts to see how the liver is doing. This lastest round with transplant has left us all feeling depressed.....after everything that John has gone through already and now facing the possiblity that he will have to go through it again is really beginning to make him lose the fight.....feeling like no matter what he does he can't seem to move forward. We will be having labs drawn again on Monday to see what they show. A MRCP is being schedule to check the bile ducts and after that a liver biopsy will be performed. Of course we were told it could be years before he would need another transplant but the possibilty is there. If they are unable to close the fistuals, John will need a small bowel transplant and if that has to be done then he will automatically be listed for another liver transplant.
Sunday, August 13, 2006 8:50 AM EST Well it only took 5 weeks, but we finally had a family outing. We went to the Reading Phillies last night. We were only able to stay until the 5th inning, but some of the game is better than none. It was not without it's mishaps, but John had a great time. I did not realize how much his leg bag could hold until we got home and I went to empty it.....750cc to be exact. We also managed to get two days out of a dressing so that was exciting for us also. It felt great to be able to go out and do something that we would have normally done. John said that it was the first time since transplant that he was in such a huge crowd. Tomorrow labs are going to be drawn and Tuesday we head to Dupont for a checkup, family meeting and ultrasound.
Thursday, August 10, 2006 8:37PM EST John had a great time celebrating his birthday with his friends. This house was hopping from Saturday thru Tuesday, John's birthday. He is feeling good. We've tried getting out for a bit, but we always seem to leak....today we consider a major success because we were out for 2 hours and he did not leak...the first time in weeks. His belly is looking good. Every day when we do a dressing change we try somethings different to try and keep the skin protected and the dressing from leaking. Next week we go back to Dupont and discuss plans for the fistuals and closing. John is also scheduled for an ultrasound to check the bile ducts.
Tuesday, August 8, 2006 7:34AM EST Happy Birthday John!!!
Saturday, August 5, 2006 6:30PM EST Life in the Maicher house is about to get a little more crazy. Our nursing care hours have been reduced which means more of John's care will fall on us. We continue to battle everyday with John's dressing changes & skin irratation. I am really becoming the master of the dressing changes :) John is trying to get up and move around more because he has to get in shape to go back to surgery. We are getting labs drawn on Monday so we will be able to check the GGT and see what is happening with his liver numbers. Tonight our house is turning into "the guy" hang out as alot of John's friends are coming over and spending the night. They are really into John's playstation and are having a champsion run tonight.....Al & I will have to get out the ear plugs to sleep.
Thursday, August 3, 2006 2:35PM EST We started John's feeds up again after stopping them 48 hours ago. His skin looks a little better but still is pretty raw. Monday they are going to draw labs again to check on the GGT. John looks good nad feels good. He still tires very easily after doing things...but he keeps going. He is working on finishing his class at Millersville that he had to leave in the spring because of transplant. At least that is giving him something constructive to do and work his brain :)
Tuesday, August 1, 2006 6:17AM EST ****UPDATE 8:20PM EST****
Saturday, July 29, 2006 1:43 PM EST John is doing good right now. Last night was the concert for the BEC summer band camp. John went and performed with the kids...it was great to see him up on stage doing what he enjoys. Even with two back packs on and his leg bag he performed like nothing was going on with him...the smile said it all. Right after he was done we rushed home because by this point we were behind with his antibiotics and his fluids. His belly is looking better everyday. Monday we head to Dupont for a check up and labs. I pray every day that his GGT will continue to come down and for the bile to keep flowing.
Thursday, July 27, 2006 8:41 PM EST Today was a better day. John was very tired this morning so he skipped band camp. This afternoon I took him to see a movie which was one thing he bugged all the docs about. I can honestly say it wasn't without it's difficulties. First the leg bag kept falling apart...after many tries I finally got it to just hang and as long as John did not move his leg too much it stayed together. Then halfway through the movie we started hearing a beeping sound...I said to John..is that you?...and of course it was...so I took the IV pump onto my lap and quietly tired opening it up...ever try opening wide velcro quietly?..the pump was saying "air in line" so I played with that and got it going again. Back to the movie...well almost over and I hear another beeping sound...this time it was the feeding pump! I managed to get that one working again,....just as the movie ended. Well, John really enjoyed going to the movies....
Wednesday, July 26, 2006 8:35PM EST Can I just tell you what a rotten day this has been. I just finished doing a third dressing change....hopefully like they say....third times a charm :/ Between fluid bags, antibiotics, feeds and dressing changes I feel like I am losing my mind at times. John has managed to get down to BEC to help out a bit with band camp. He has been managing about 1 hour....he comes home really tired. I heard from the docs that John's line grew 2 bacteria's and that both meds he is on will cover them. We go back to Dupont on Monday. John continues to keep us stepping,
Monday, July 24, 2006 9:39PM EST We are home. It was nice to have a short stay this time. We came home on two IV antibiotics plus IV benadryl because John had a reaction to the one antibiotic. So add all of that on top of what John was already getting and this place is really hopping. John said he feels great!!! We go back to transplant clinic next Monday. I feel very exhausted tonight...trying to remember everything that has to be done wears you down...thank goodness the dressing is not leaking....I should not have to worry about that until morning. John plans on trying to go down to the BEC elementary center tomorrow and help out with summer band camp.....he enjoys working with the kids and said he is not going to let all of his issues stop him.
Sunday, July 23, 2006 1:00PM EST John is doing better today. Friday they put the chest tube in and they removed it today. His numbers are coming back down and he has not had a fever since Friday afternoon. He most likely will be coming home on Monday. While at home we will administer IV antibotics. We were told that if John had not come in when he did he could have gotten really sick since the infection was in his blood stream. John is VERY glad that this looks like it will be a short stay. He also told me that he was glad that he was here because he felt so sick when he came in. Keep your fingers crossed and say those prayers that we will get home tomorrow.
Friday, July 21, 2006 4:11PM EST Today has been an interesting day. John's culture that they pulled yesterday has already started growing showing that the port is infected. He was started on antibotics last night after they pulled the cultures. They also took John for a CT scan to check the liver for any fluid pockets and absesses.
Thursday, July 20, 2006 7:21AM EST ***UPDATE*** 7:30 PM
Tuesday, July 18, 2006 7:13AM EST ****UPDATE*****2:20PM EST
Sunday, July 16, 2006 2:05 PM EST As usual life is never null with John. Yesterday he enjoyed the entire day with his friend Jay, and another friend John stopped over. It was the first time since he has been home that he was up all day so he crashed after everyone left. He also was running a low grade fever yesterday, I'm not sure where it came from. He has also been more irritable the past two days so it is possible that he is starting with something. His skin is also breaking down more and more every day. His drainage is also up so the octreotide is not working. Today no fever so far, but we have had to change the dressing twice. Like I have said before they are very time consuming and when John's skin is so raw it hurts even more to do the dressing. Tomorrow we head to Dupont again, this time surgery is also going to check is belly. He will also have labs drawn so we will see what his numbers look like.
Friday, July 14, 2006 9:11 AM EST Good Morning....
Wednesday, July 12, 2006 12:35 AM CDT John is doing okay and is enjoying being at home. My house has certainly come back to life with John and all of his friends hanging out. I want to personally thank all of John's friends for there support and caring during this difficult time. For the first time in weeks, John woke up dry this morning....yippee....no leaking and no sleeping in bile. He was SO happy. I must have put his dressing on well...now if I can only do it again. Last evening John started working on his PT regimen that was given to him...with the help of his friend Jay, John managed 5 minutes on the Eliptical trainer...his cardio vascular system is still out of shape. Today, we are going to try and do more of the exercises that were sent home. Tomorrow more labs will be drawn so we will see if there are any changes to be made.
Monday, July 10, 2006 10:17PM EST Good Day today...a little crazy trying to get John and all of his aparatise down to Dupont but with the help of our nurse we managed. Not to many changes for John....his magnesium was down to the critical point again so they have decided to add the mag to his fluid bags. They also increased the Octreotide to see if we can reduce the drainage again. John's labs were okay...his Total bili and Direct bili went up slightly but the rest even the GGT went down. We have to have repeat labs on Thursday to recheck things. John certainly has been enjoying being home. Even though he has not been able to do much he has REALLY enjoyed his friends visiting. It is so great to hear the laughter in the house again. We did receive John's bags for his dressing so tomorrow we can at least put a better dressing on John.
Sunday, July 9, 2006 1:20PM EST Another busy day. We had to change John's dressing 3 times yesterday...with each one taking over an hour you can just imagine how we were feeling after the third time and John leaked. I managed to find online the pouches that we need for John's dressing so I ordered them myself...hopefully we will get them sooner than the one we are waiting for here that are back ordered. John has taken a snooze every day since he came home....then he is set for the night. Our nurse that we had last night, since she has been with John before told Albert and I to get out and take a break...so Albert and I headed out. It was definitely needed. Tomorrow it is off to DuPont.....should be interesting.
Saturday, July 8, 2006 8:43AM EST Well another full day at home....but not without mishaps. John's dressing supplies never came. When I called the company that was getting them for us they said they had to check with UPS because they did not understand the what the tracking ifo menat....I though "this does not sound good". He said he would call me back. I waited another 1/2 hour and he not called back so I called again and was told he was still on the phone checking out the situation. At that point, I called transplant and told them that I probably was not going to get my dressing supplies until Monday. Transplant had we check what I needed. It so happens that our friends the Heintz's were at Dupont for Alli and transplant as them if they could meet me somewhere and give me what I needed to hold me over. Transplant then called me back and told me that Jill was going to meet me with the supplies. In the meantime, the medical supply company called me back and said that SOME of my supplies were going to get delivered on Saturday...and that the pouches (the most important part of the dressing change) are back ordered and because of that my order had been held up. Now I am also suppose to get supplies on Monday that I will have to refuse. Transplant said we will look at things again on Monday when John comes in for his checkup. John also was dehydrated yesterday and I did not have any extra fluid to give him so transplant ordered that for me also, which we gave to him last night. John's feeding pump is suppose to be portable, yet they did not send the bag that the pump goes into to make it portable. I asked for this bag yesterday to come with my fluids, but....you guessed it...it did not come. So now when John goes to Dupont on Monday I will have to stop the feeds. They did stop the magnesium, so hopefully the runs will stop. The new suction pump came yesterday, it is still noisy, but is tolerable. If it was not for the fistuals causing so much havoc, our lives by now might have been pretty much back in order....still no date on when the fistuals will be taken care of. Because John's belly is so scarred, they went to give him plenty of time to heal from this surgery because even the fistual surgery will be a difficult one.
Friday, July 7, 2006 7:50AM EST What an exhausting day yesterday was. We were up at 8:00 and I went to bed after midnight. Of course when John woke up he was soaked from leaking overnight. We got him ready to go into the shower, and as he was going up the stairs he fell, and then he could not get his balance. This had him very upset. I tried to explain to him that he is not as strong and he thinks he is, but he did not we spent the next hour or so doing his dressing. Nursing care started yesterday also...THANK GOODNESS!!! We have split shift nursing for morning and evening. Unfortunately, we have only been approved for 14 days of nursing care. After we got John situated, Albert and I decided to tackle all the boxes of supplies. We went to Walmart and bought storage containers and I spent the afternoon organizing the supplies. We have more coming today. I spoke to transplant a few times yesterday and hopefully we will have the correct suction machine coming today. The makeshift dressing held up yesterday with all of us taking turns turning the portable suction on about every 20 minutes. My sister-in-law Gina made dinner for us which we am extremely grateful for, otherwise I think we would have just ate junk because there was no time to cook. John is also suppose to be doing PT at home....I was like "yeah right"...when are we suppose to fit that in? By the time the day finally came to an end we couldn't help but think...what did we get ourselves into :/
Wednesday, July 5, 2006 12:29 AM CDT *****UPDATE*****10:00 PM EST
Tuesday, July 4, 2006 6:54 AM CDT Happy 4th of July!
Monday, July 3, 2006 7:17AM EST I sure have been lax at updating this site this weekend. John is doing good...the weekend for the most part was quiet. After much persuasion we convinced the doctors that John needed more fluid than what they were giving him. Since they started changing around all of John's fluids we have watched him get drier and drier...when John's lips are dry and he starts picking them it's time to do something about it. Yesterday Albert and I changed John's dressing on his belly by ourselves with no nurses help...in fact, they were not even in the room. I must say we did a fine job :) and as of last night everything was holding tight. This morning I am sitting here at home waiting for the hospital bed and other medical equipment to be delivered. I can honestly say as much work as it will be I am really looking forward to having John come home.
Saturday, July 1, 2006 6:54AM EST Sorry for not posting yesterday...another burn out day. When I got to the hospital yesterday John's dressing had leaked everywhere and he was sleeping in a pool of bile...yuck!! So we had to take down the dressing and put him in the shower to wash all the bile off. Then it was time to re-dress the belly. The doc came in and were once again pleased at the way John's belly looks. They were going to increase the octretide in the fluid bags to help with the drainage output to try and cut it down some more. John has been having discomfort on his right side the past few days...just like the discomfort he was having before sugery so Dr. T wanted John to have a CT scan with contrast. Everyone knows that John is not an easy stick for an IV so we ended up going to ultrasound to have an IV put in. We had success...or we thought we had success, but by the time we went from Room 6 to Room 8 and they put the contrast in, the IV blew. All of the contrast went into John's muscle in his arm. Needless to say that was quite painful and John's arm looks like there is a baseball under the skin....and we did not get the CT scan done :( I'm not sure what they are going to do about it but I would really like them to check it out before we come home. So last night John was resting comfortable...arm elevated, but talking on the phone and chatting on the computer.
Thursday, June 29, 2006 4:00 PM EST Things are moving forward for John to come home. The new bags came in for his belly and we tried it out this morning. We'll see how well it does. They are still shifting fluids around to try to make things easier for us at home. John will have to stay on his feeds 24 hours a day because he cannot tolerate the feeds if the rate is too high. As of right now, he will have 4 hours where he will only be hooked up to feeds.
Wednesday, June 28, 2006 5:54 PM CDT We had our meeting today with the transplant team. As of today, John will be coming home next Wednesday. On Monday equipment will be delivered to the house. My living room will be transformed into a hospital room including the hospital bed :/ It will be challenging but I think we will be okay. We have been approved for daily nursing care, which will help to get us started.
Tuesday, June 27, 2006 7:10PM EST TIme just seems to go by in this room. Today was the usual change the dressing which takes over an hour and of course we no sooner got finished and we had a leak. So then we spent another 45 minutes trying to plug the leak. As the day went on we have had to plug the dressing two more times the last time being about 10 minutes ago. Tomorrow is the meeting with everyone. I am anxious but excited. I know that when John comes home I will change hats and become nurse/mom. John being so persistant about going home is the main reason he is coming home....the doctors and nurses would keep him here because of the care he needs. Please pray that the right decisions are made for John.
Monday, June 26, 2006 1:00PM EST *****UPDATE***** 7:13PM EST
Sunday, June 25, 2006 6:49PM EST Quiet rainy day here at Dupont. Tomorrow morning John goes for his endoscopy and in the afternoon transplant has their Monday afternoon meeting. John is suppose to be discussed at this meeting and we are going to start making plans to bring John home....unfortunately John thinks that when he goes home he will be able to do anything and everything...BUT that is far from the truth. At this point John is still hooked up to suction 24/7, fluid 24/7 and feeds 24/7. I am hoping that the endoscopy goes well tomorrow and that they find where the fistuals are and will be able to plan to close them.
Saturday, June 24, 2006 4:25PM EST John is doing okay. They are going to try putting his feeds back to 50/50 of the peptinex and peptimen 1.5 and see how he does. They would like to get him calorie wise to the point where he does not need anymore TPN. Monday is going to be a big day. He is scheduled at 10:00 for his endoscopy and that will tell alot. Also it is lab day. John says that he feels better than he has for a long time. It amazes me that he can feel so good when he still has so many issues that have to be dealt with.
Friday, June 23, 2006 10:34 AM CDT The fistual gram from yesterday showed that baby fistual is not quite closed, but is smaller than it was. The feeling is that with a little more time it will close. They have increased John's feeds back to where they were before stopping them because John's belly was so broken down. We are once again trying a different dressing on John's belly to see if we can prevent his skin from breaking down and from the dressing leaking. Every dressing change takes over an hour to do....so you can see why some days I am so frustrated when we have had to change his dressing so many times. Next week sometime he will have the endoscopy done to check the remaining two fistuals...Fred and Fred Jr. and see the anatomy of where they are, how big, and the best way to try and close them.
Thursday, June 22, 2006 10:54 AM CDT John is going for a fistual gram later today to check to see if baby fistual has closed. From what I have seen I doubt it but they want to check. John also will be heading back to the OR either Friday or early next week to have an endoscopy done. Dr. D and Dr. T want to really look at the fistuals and try to draw a picture of where everything is and how to close the fistuals so that we do not have other problems. We are also still trying to come up with dressing that will work on John's belly. John's labs were virtually to same as they were on Tuesday. So right now things are stable, we would definitely like John's numbers to be a little lower, but stable is better than going up.
Wednesday, June 21, 2006 3:29 PM EST John is having a great day. Everyone is pleased with John's progress this week. His feeds are almost back to where they were 2 weeks ago and his drainage is down. Tomorrow is lab day so we will see what the numbers have to say. Word has it that on Monday it will be discussed when and how to get John home and when the rest of his surgery will take place. John has healed quicker than everyone anticipated. Granted with transplant things can change at a moments notice, but it's nice to be thinking ahead. Everyone knows that taking John back to the OR is not going to be an easy task.
Tuesday, June 20, 2006 12:02 PM EST John had a good night. Late yesterday afternoon they restarted John's feeds. They were started at a low rate again, but they also are using octreatide along with it. Octreatide helps to slow down the secretions. More labs were drawn today and his liver definitely likes being fed because most of the liver numbers came down just a little today. Dr. D was in to see John and told him he looks fantastic. Now the decision is to be made whether to take John back to the OR sooner or stick with the original plan for later. Everyone is still wracking their brains to try and come up with some kind of dressing for John's belly that will not leak.
Monday, June 19, 2006 12:45PM EST I wish I had better news to report, but John's liver numbers today were unimpressive. Both bili's stayed about the same and his AST, ALT & GGT went up. I questioned this and we get told it's not a big deal that the numbers are going to go up and down all the time. I mentioned that I thought it might be coming from the fact that John is not getting any feeds right now. They stopped his feeds on Monday or Tuesday of last week, and on Thursday and today the numbers went up. I was told it could be. The dressing changes have been interesting...seems I've taken over doing the dressing changes even though I was never trained. Only a few people know how to change the dressing and when they are not around, others do not know what to do so they look at me....so that is how it has come that I have been doing the changes.
Sunday, June 18, 2006 1:47 PM EST I hope everyone is enjoying this HOT summer day. We were going to take John outside but it's too hot for him. Another night with no leaks.....I'm not sure we can handle the quiet :) John feels good, a little more jittery since they lowered his adavan. We were told to watch this and if we noticed more anxiety and jitterness to let them know. Tomorrow is lab day and I am hoping for good numbers. I am also hoping that baby fistual has closed because John really wants the feeds to be able to start up again.
Saturday, June 17, 2006 9:42AM EST John had a good night....no leaks from the dressing. First time in a long time he did not leak overnight. The doctor said he looks good...in fact he said John is a little "hyper" today...haven't said that in awhile :) John said he feels really good. If we could just get the belly under control we would be in good shape and could be making our way home. We have been watching all of the World Cup soccer games....everyone who comes in the room always gets caught up in the games...and of course if they have any questions about the games John knows the answers :) He also is able now to work on school work, so he is going to gear up to finish the class he was in when we got called for transplant. John's teacher was kind enough to give him an incomplete for the class. Even though we are in the hospital it is nice to be able to do somethings that are not hospital or doctor related.
Friday, June 16, 2006 2:36 PM EST Can I just say how frustrating John's dressing changes have become. We no sooner get his dressing changed and new bags on when he starts leaking. Because John's belly is so messed up from previous surgeries it is very hard to get a good seal. I think everyone is running out of ideas. Other than the dressings John is doing okay. Everyone was again taking bets on what John's bili numbers were going to be on Monday. Today John has enjoyed the visits with his friends..which he so deparately needed. It has not been an easy week for him and he is getting so tired of being here and nothing working on controlling the output from the fistuals. Please pray for some patience for John and wisdom for the doctors and nurses.
Thursday, June 15, 2006 3:24 PM EST Well, the NG tube did not work and was removed around 6:30 last night. The hope was that by having the NG John would not drain as much from Fred Fistual... Today we are back to having bags on our belly and if we can get the fistuals under control we will go back to the orginial plan of sending John home and bringing him back later to close the fistuals when he is stronger. The ideal situation would be if the baby fistual could close then everyone could just concentrate on Fred and Freddie Jr. Liver numbers today have the total bili to 2.1 and the direct to 1.8...the GGT also came down a little bit today..however the liver enzymes were up a little so that is being watched.
Wednesday, June 14, 2006 1:34 PM CDT Can I say angry....frustrated.....exhausted. That is how our day has been. John had an NG tube put in today. The feeling is that if they can keep the bile from getting to the fistuals that his skin will heal. John's skin became raw over the weekend because the wound bag that was on was on too many days before it got changed. Because he puts out so much the plan right now is to get the skin healed and take him to surgery to try and close the fistuals....plans here change faster than I can keep track of them. Of course there is no guarantee that surgery would work, but they want to try. Why he is healthier now, after months of being told he needed more time to heal, beats me. I'm asking for prayers for strength. This has become so frustrating.
Tuesday, June 13, 2006 6:15 PM EST What a crazy and busy day in John's room. It all started at 8:00 this morning when John called to tell me that he was in intense pain. We had to call transplant and they ordered some pain medication for him. When I came over he was still in pain, so we put an ice bag on his side. I got him washed up and we went outside for about 1/2 hour. All of this tired John out and he slept for about 1 hour. When he woke up he was in pain again. Transplant was called and they decided to change the dressing again. When they took the bag off, they noticed that John's skin was more broken down than yesterday. So the plan was to stop the feeds for 24 to 48 hours and not put the bag back on but to use dressing pads and try to get the skin to heal. With John not getting the feeds he should not produce so much bile and it will give the skin a chance to rest. We no sooner got the dressing on, when he started leaking....so we changed everything...it only took another hour and then John went off to PT. When he came back from PT his dressing had to be changed again. It looks like his dressing will have to be changed every 2 to 3 hours. They are also going to try spacing out the fluid replacement again but this time he will get his fluid every 4 hours instead of every 8. So..it once again was a non stop day.
Monday, June 12, 2006 2:54PM EST Our precious Baby Cat died today. He will be greatly missed by all of us, especially by John. He was with us for 16 years and was a great source of comfort. I'm glad that John was able to spend some time with Baby yesterday. Transplant said John could get another cat after one year.
Sunday, June 11, 2006 5:39 PM EST John is doing okay again today...he looks really good. Tomorrow is labs day so we will see what is happening with his liver numbers. I want to thank Dr. M and the nurses on 3CS for helping us today. Our BabyCat is very sick. John's Aunt and Uncle brought BabyCat down to Dupont today so that John could hold him for a little while. This was very hard on him but also very good for him. BabyCat has been a part of John's life for 16 years and the bond between them is very tight. We are not sure if BabyCat will make it through the night, but John has asked for everyone to say a prayer for Baby tonight.
Saturday, June 10, 2006 3:35 PM CDT John is doing okay today. They had to go back to 24 hour fluid replacement because it did not work out just giving him replacement fluid 3 times a day. They stopped his fluids around 10:30 yesterday and he was not due to get any more fluid until around 4. About 2:00 when John and I were playing cards he looked at me with this strange look. I asked him what was wrong and he said...I don't know, I just don't feel right. So after having him checked out they decided to give him his fluid early and sure enough he bounced right back and felt much better. So today Dr. M put him back on 24 hour fluid replacement. The other day when John and I were sitting around I said..."John, no one has asked you this question yet because we've all been so wrapped up in everything else going on...How do you feel since you got your new liver....do you feel any different"?He answered me with..."I feel great, I'm not tired anymore, and I have more energy". I was so happy to hear that.
Friday, June 9, 2006 12:17 PM EST Not much happening so far today...bet you never thought you'd hear that one. The doctors played with some of John's tubes and that is it. They have started working on spacing out his IV fluids so that he is not hooked up all the time. Next they will start working on the feeds and try to give him time off of everything except the suction....however, when he goes to PT or for walks he is off the suction too. In PT they have him using weights to start building up muscle mass that was lost from being so sick.
Thursday, June 8, 2006 6:56PM EST Late post today...I was busy being a mom today...anyone for 500 rummy..or should I say unlimited rummy :) John's bili numbers were down again today....total bili is down to 3...remember we need to get to 1 or under. Transplant does not hesitate to tell us that even though we are working on getting John home, at anytime plans could change. They are working on trying to get the smallest fistual to close so they have put a much smaller tube in...however, the bigger tube was put in to block the fistual because the feeds were coming out through baby fistual....well you guessed it..with the smaller tube the feeds are coming out. I'm not sure what they are going to do about it, but it will be discussed in the morning. Plus the doctors watch the color of the drainage, they look for green because that means the liver to working and making bile, today John's drainage has gone back to yellow, with no green in it...like I said, things can change at anytime. They are also starting to train John and me on changing the dressing and cleaning the site....although most of the time John is telling them what to do.
Wednesday, June 7, 2006 2:43 PM EST John is doing okay today. They have changed the formula that they are giving him to try and get him some more calories and see if they can get the calories up enoughh to also give him a break off the feeds. They are also working on trying to schedule John's meds and fluid replacement so that he can have some time where he is not hooked up to something. He still has alot of pain on the right side where his skin is broken down and because of the open wound it burns everytime bile runs over it. Tomorrow is labs and everyone is anxious to see what the numbers are....we, of course are all hoping for lower numbers.
Tuesday, June 6, 2006 1:01 PMEST WOW, I can't believe this site has reached over 100,000 hits. To all of you who care so much for John to want follow us on our transplant journey....you have helped John get to where he is now THANK YOU!!! We are truly blessed to have so many people who care.
Monday, June 5, 2006 12:22 PM EST Good News today..... John's total bili, direct bili and liver enyzmes all came down. His total bili is down to 4.1 which everyone is pleased. Normal is 1.0 or less, so you can see we still have a ways to go, but we are getting there. Also today, the tube was taken out of Freddie Fistual because the tube was not being used. So we are down to two tubes now. Dr. D again said that eventually they are going to have to operate to close all the fistuals. Overall Dr. D said the big picture....John is getting better.
Sunday, June 4, 2006 9:11 AM EST Sorry for the late delay....busy day yesterday. John's temp went up again Friday night into Saturday. So they woke him up at 5AM to check him out and see if there was anything visibly that they could see. An hour later his temp was down and he has not had a temp since. The suction on this dressing got clogged which caused the bag to fill up and start leaking. We got that all straighten out and that made John a bit more comfortable. Dr. M said that if John's temp keeps going up and down that they may do another CT scan next week. We know that there is still some fluid between John's lung and liver that they could not get to it to drain it. I worry that he may have some bateria in that fluid that could be causing an infection. We'll see how today goes.
Friday, June 2, 2006 3:48PM EST John is doing better today. The new antibiotic seems to be helping. He has not had a fever so far today and the whites of his eyes do not look as yellow. Here's hoping that we can get past this and John's liver numbers will come back down with his labs on Monday. Still having numerous issues with the dressing on his belly. It hurts John so much when they have to change the bag on his belly because his skin is so irratated. It breaks my heart to hear him because I can't do anything to take the pain away.
Thursday, June 1, 2006 11:30AM EST John is still running a temperature. His liver numbers all went up except for one of the enyzmes. They feel he has bacterial cholangitis, which is an infection in the bile ducts and biliary tree and they are changing one of his antibiotics. John is really bummed out about this. Yesterday his chest x-ray showed that he still has some fluid in the bottom left lung, but the rest of his lungs look clear. The object now is for him to get up and move around as much as possible and continue to help move things around. Because of the temp he is feeling off again today. I hate to sound like a broken record, but I'm once again asking for extra prayers to help John keep improving and let the liver continue to work.
Wednesday, May 31, 2006 10:00 AM EST ****UPDATE**** 1:52PM EST
Tuesday, May 30, 2006 5:00 PM EST Quiet day here in John's room...it's nice to have one of them, it's been a long time since we had a quiet day. They changed John's dressing on his belly this morning since he started leaking overnight. Everytime he leaks it breaks his skin down and causes pain. John went to Physical Therapy today and they are now putting weights on his arms to help build muscle in his arms. Next they are going to start working on his legs.
Monday, May 29, 2006 12:05PM EST HAPPY MEMORIAL DAY!!!
Sunday, May 28, 2006 2:10PM EST John is doing okay again today. I saw Dr. D this morning when I was coming in and he said John looks good and is looking less and less yellow everyday. Tomorrow is lab day so we'll see what they show. Everyone is taking bets again. John is a little cranky today, he said that he did not sleep well last night. Maybe he'll take a nap today. Today is Albert and my 23 anniversay...I had given Al a gift certificate at Christmas for the Spirit of Philadephia so it has come in handy this weekend for our anniversary. Hopefully John will rest while we are gone and will feel a little less cranky tomorrow.
Saturday, May 27, 2006 12:18 AM CDT John's doing OK today. We got him outside in the sun and played several hands of cards. Dr. D was in and Transplant is pleased with Johnny's progress. No labs until Monday. Transplant has tried building up a "dam" on John's stomach using paste to prevent the bile from spilling out and burning and eating his skin away. Also, they've blown up the balloon that holds the tube in "Baby" fistula. This seems to be helping as John feels more comfortable and is not in agony. Please have a safe and enjoyable holiday weekend and thank you for all of your prayers and support.
Friday, May 26, 2006 2:25 PM EST Rough morning for John...I was sure everyone back home would hear him screaming this morning. They had to change John's dressing on his belly and after they got it done the first time, it leaked and had to been done again. His skin in some areas is so raw that the drainage just burns when it hits those areas. The doctors and nurses have tried many different ways to protect the skin, but nothing seems to be working. For the past few days John has been in agony with this burning. They are going to leave his feeds where they are at for right now since his body seems to be tolerating them and also keep him on the antibiotic. Granulation tissue is starting to form over the open area on his belly so hopefully soon we will be able to do something with the open abdomen.
Thursday, May 25, 2006 12:10PM EST Everyone is pleased with John's labs. His biliruben came down from 10.1 to 8.5 which is lower than any of the bets that we all made. All of his liver numbers have come down some more. John received 2 units of blood yesterday which bought his hemaglobin up over 10. He says he is feeling "spunky" today :) No temperature so far today, but they will keep him on antibiotics since he has been running temperatures. They had to back down on the feeds yesterday because John's body couldn't handle the extra amount. We plan on going outside for a bit today....No labs now until Monday...let's pray those numbers continue to come down.
Wednesday, May 24, 2006 8:46 AM EST ****UPDATE**** 12:16PM EST
Tuesday, May 23, 2006 1:30PM EST John is having another good day. He says he feels a little "off" today and I think he looks a little tired. They have stopped doing accu-checks for his sugar so his fingers are glad, and they have stopped the antibiotics. No labs will be drawn until Thursday so it will be interesting to see what happens with his numbers. They are not going up on John's feeds today because they want to go up slowly so that they do not have any problems and have to back down again. So it looks like John will have another much needed quiet day :)
Tuesday, May 23, 2006 7:21AM EST GOOD MORNING!!!
Sunday, May 21, 2006 11:35AM EST Praise God!! For the first time in quite awhile ALL of John's liver numbers have come down. This was great news for us to hear. They are all still high, but it was nice to see them trending downward. No fever since yesterday so no one is really sure what the temp was all about, but because John has a port and his belly is open they did start him on antibotics. Starting tomorrow John's labs will only be drawn on Monday's and Thursdays...another sign that things are going in the right direction. John's feeds were increased yesterday which is also going in the right direction. John feels good and today we are even going to venture off the floor and head to the gift shop. John said he's ready to start working on crossword puzzles again :)
Saturday, May 20, 2006 3:10PM EST John loves to stir up trouble on the weekends. Today we spiked a temperature. We are not sure what it is coming from but they are checking a few different things. His liver numbers continue to be stable with the GGT making the smallest jump it's had all week. Of course now with a temp it will effect the numbers and I expect them all to be up tomorrow. We are waiting to see the doctor to see if he is going to increase John's feeds. He seems to be tolerating were they are now, so I hope they increase them. We were outside again today for a little bit. Hopefully we can catch whatever is going on with John before it turns into something more.
Friday, May 19, 2006 5:20PM EST Sorry for the late post..time just flies in John's room. The doctors feel that John's liver numbers even though they are still high have stabilized and now it's just a waiting game to see how the body reacts to the feedings. It is still the hope that with feeding and no TPN John will respond and his liver numbers will come down. We were also told today that it will be months before they close John's fistuals...needless to say this was a disappointment to John. Both surgeons had a chance to view John's belly today and are pleased with how it looks and how the belly is doing some closing on it's own. John feels good and is working more on getting up and doing things. He has enjoyed everyone's postings on this site. When I go on to update he always asks me to read the messages to him. Thank you for your continued prayers.
Thursday, May 18, 2006 4:25PM EST Physically John is having a good day today. He went down to the PT lab and played air hockey with his physical therapist. It tired him out, but he enjoyed it. Then we walked around the floor and went and sat outside for some fresh air. Number wise....they all went up except for one. The did not go up alot, but they still went up. Transplant considers them about the same as yesterday. The feeds are going well and tomorrow they will probably go up on the amount they are giving him....anything to get him off the TPN. I am feeling better, but looking back over the weekend I believe I caught this bug from John. No one even realized with everything going on that he might have had a GI bug...but since I got sick we were able to compare symptoms and they were very similar. Please keep praying for John's liver numbers to get better.
Wednesday, May 17, 2006 11:34 AM CDT John's numbers continue to come down..all but the GGT which keeps going up. I asked about it and was told they are watching it to see what it does..it is usually the last to go up and the last to come down. John is going back to fluroscopy today to do some more work with the tubes. Transplant want's to try and do the feeds through Freddie Jr because Baby is too far down stream. Before they can do that though they need to recheck the tubes. Yesterday, John's friends came to visit, but as usual John was taken away for testing and it took up most of their visit. John was very upset about that...I'm glad since I was sick that his friends came to visit and hope they can make it back again soon. Me, I am still being banned from John's room. My GI track is not right yet so they said to give it another day. I called my parents and they are down sitting with John today and helping out in the room. Because of all the tubes John has now he says he feels like an octapus :(
Tuesday, May 16, 2006 4:31PM EST What a day...first mom had to stay away from the hospital because I got a GI bug which we all know John does not need. John, just never seems to get a break. The first call I got this morning was John complaining to me that they want to put him back on the TPN. When they got John's feeds up to 85cc an hour, John got the runs. Then he had all the trouble with the tubes over the weekend so it was decided today that because his numbers have come down again today that it would be safe to put him on a small amount of TPN and continue the feeds at a lower rate and take him up slower on the feeds to let his body get use to having to work. The second call I got from John was to let me know that after almost 2 hours in fluroscopy that he was back and now has 4 tubes. It seems that Freddie Jr has two holes so another tube was put in Freddie Jr, and they were also able to get a tube in the baby fistual. Now the plan is to feed through the baby. Needless to say..John is not happy about any of this because he feels like he lost alot of ground in one day. Transplant feels that because John has been off the TPN for a few days now and the GI track is stimulated that his numbers will continue to come down even with being on a small amount of TPN. Please continue to pray for John that we can get the feeds going properly, and that his numbers continue to come down.
Monday, May 15, 2006 2:17PM EST ****UPDATE**** 7:13PM EST
Sunday, May 14, 2006 6:06PM EST Happy Mother's Day
Saturday, May 13, 2006 11:27 AM EDT Good Morning. Some of John's liver numbers are down, the AST and ALT.. and the bili's are up again. Overnight John's feeding tube came out of Freddy Jr. They had to stop the feeds. Dr. M wants John to go to x-ray today to get the tube placed back into the right spot so the feeds can continue. The hosp. is not staffed as well on the weekends so this might have to wait until Monday. John might have to go back onto TPN until the tube can be put back in. John is not happy about this because he does not want any further damage done to his new liver. Dr. M said one or two days won't hurt anything. I asked how long they would watch his numbers and the Dr. said it's hard to say...but usually it's a week or two. All we can do is ask everyone to pray that the liver starts processing the bili and those numbers come down.
Friday, May 12, 2006 12:50PM EST Not much new to report today. Total bili and direct bili went up again today. One of John's liver enyzmes came down the other went up. The TPN is done and John is strictly on feeds through the fistuals. Now it is a waiting game to see what happens. Dressing changes are still a challenge, but John handles them like a trooper. It hurts me so much to watch what he is going through. He feels good though and is eager to do things but his body is hindering him. Prayers are needed to get that liver bile to start passing through so that John's bili comes down.
Thursday, May 11, 2006 11:41 AM CDT *****UPDATE*****6:30 PM EST |
