Ally Heintz

Happy Birthday Daddy!!!

Ashley and I didn't get a chance to update yesterday so sorry it is a little belated. It was a busy day and plus Ashley wasn't feeling very well. Poor thing, she has very bad ear infections and I can tell she is feeling exhausted.

Anyhow, Daddy I wish you could've had a better birthday. I know you didn't get to do anything since Ashley was sick and I didn't have a nurse but we can hope for things to be better for your 2006 birthday.

Mommy said it is okay because she has a surprise present for you but it won't be here for a couple of weeks. I wonder what it is. If Ashley is feeling better today we will have a pseudo birthday party. Ashley will sing and I can eat all the cake!!! Plus we got you some presents and Ashley wants to give them to you.

Mommy , Ashley and I love you very much and we appreciate so much all that you do for us. This will be another difficult year but hopefully we will have everything resolved by December 31st 2006 and than you will have the best birthday ever.

All our love,
Ally, Ashley and Mommy

Before I forget, if you want to keep following my progress you need to send my mommy and daddy your email address and include in that how you know about me. Beginning January 5th you will need a password to access my website. The people that already emailed us should've received the password in an email my daddy sent out yesterday. So if you haven't please let mommy and daddy know. All emails should be sent to aajsheintz@yahoo.com

Thank you,
Love, Ally

We hope everyone had a joyous holiday weekend. We certainly had a few busy days ourselves. Nothing we are not used too. The girls had a great weekend. It was the best present we could have received, just to spend time home as a family! Of course the girls received way too many presents and toys. Ashley had a visit from the Grinch Saturday morning! He returned her DVD player that he stole while in Pittsburgh (be sure to see the photos of this in the new album).

Ally has been doing well. Mostly likely because she is not receiving any feeds as of now. Pittsburgh called the other day to let us know Ally's PELD score is now 28. They also want her to have a motility study done because they want to see if she really needs a stomach in transplant. I wish they could just make up their minds on organs and scoring!

Thats's all for now, we will update soon with any new information. Enjoy the new photos!

Yeah, we finally made it home!

Ally came home yesterday afternoon with a new central line and a new G-J tube. She had both of those placed Wednesday in the OR. They had no problems placing either one.

Last night the girls were busy playing and I think both of them were just really enjoying being at home again. We have plans to go for a Christmas tree later today.

Ally was officially listed for transplant on Wednesday. Her PELD score for the liver is a 40 which is sthe highest it can be. She received some exception points for the continuos line infections, previously having a transplant and for a needing a multi-visceral transplant. We are not really sure what the 40 points means though because we were still told to expect at least a 6 month wait but in theory the call could come at any time.

For now we are setting all the transplant stuff aside and are planning for a wonderful Christmas weekend.

Happy Holidays to everyone and we will update sometime next week.

Jill

Ally is back at duPont and resting from the long trip to Pittsburgh

The week was long for everyone, but we survived. In the begining of the week it looked as if they were not going to accept Ally for transplant. They thought with a good liver and bowel length maybe all she needed was some more time to feed. But as Friday approached, things started to change. By Thursday she made it on the list as a status 2. All that gives you is time on the transplant list, not much more. When Friday came, they did an upper GI and seen first hand what we had been telling them all week. I guess they needed the proof themselves. Ally's stomach was slow to empty, and when the contrast got to her bowel it just flew right on through. They took more blood to do testing for some other things, and still want us to have a motility test completed in the upcoming weeks.

The final results; Ally is now on the transplant list as a Status 1. She is listed as needing a multi-visceral. She will need a small bowel, liver, stomach, and pancreas. She will get all these ograns because it will give her the best opportunity at survival.

As for the next few weeks, we are still going to give the feeding issue one last try. Yesterday we tried placing an ND tube (nasal feeding tube) down Ally to start trying feeds again. This is somewhat of an issue, because with her stomach exposed, the tube tends to come out her abdominal region, not bypassing the hole in her stomach. Pittsburgh wants at least 4 weeks of feeding before they would accept any organs for her. The wait time for transplant is expected to be 8-12 months.

So many of you ask what it is you can pray for. I will tell you. Pray for the family of the young child who is healthy and enjoying life today, and at sometime next year will die of a sudden trauma or accident. Pray for the parents to make the life saving decision to donate their childs organs. Pray that Ally stays healthy enough to recieve those organs to not only live her life, but to share life with the young child you has passed. This is what we pray for. Just for a chance at life!

Enjoy all the new photos.

REMINDER: we will be placing password protection on Allys site starting Jan. 1st. Please know this is for good reason. If you want to continue to follow Ally, please send us your name, how you know Ally and an email address so we can send you the password. Forward your information to aajsheintz@yahoo.com. We will put this reminder on every update from here until the 1st.

We all made it back from Pittsburgh safe and sound. However Ally and I did have a delayed take off so we are a little exhausted. Just wanted to let everyone know that we made it back okay. We will give a full update with pictures sometime tomorrow or Sunday. Sorry for the delay we are just to tired to write.

Jill

I'm not even sure how to start this update...but by saying that it was extremely long day with not a very happy ending! Read on.

Tuesday morning was slow, we played with Ally and Ashley up until about 10:30 a.m. Then, Jill and I met with Bev from transplant to go over the small bowel procedure and everything that can be expected. The class was great! Not only did we learn much more about the bowel, but we had the experience to see photos of kids from the time they were transplanted up to 12 years later. For the first time, we felt as if we were not the only ones going through this. Seeing the end results of determined childeren survive such obstacles was amazing! It proved to us that Ally will do this, and be one of those stories of inspiration.

After the 2 hours of class we went back to Ally, had some lunch, then spoke with Deb a behavorial social worker. She was there to find out more about Ally and our family and to offer any services of help we may need during our stay. Then at about 5 p.m. 10 doctors entered the room to discuss a plan for Ally.

Plan is that they are not completely convienced that Ally needs a small bowel transplant. They feel that with a healthy liver (as of now), plenty of bowel length, that we just may have never had a real chance at feeding her and pushing her gut to the limit because of all our set backs. While this is somewhat true, we do know however that when Ally does feed, food passes through quickly. So when we told them about how she has not gained any weight this year, they then recommended us for a bowel motility study. The problem Jill and I think is that her gut while it has great length, it just doesn't move food through. We agreed for the motility test. However, the test can only be performed in Columbus, Ohio. So we are planning in a few weeks to maybe take a trip there.

As for any other things done to Ally today, nothing happened. Just alot of talking and planning. Tomorrow will not be such a good day tfor Ally. She will have an ND tube placed down her nose into her bowel, and an upper GI will be performed. This most likely will give them a better understanding of her motility issues.

So stay tuned. Sorry for being so brief but its late, I'm exhausted, and the rest of the story will explain more.

As for the rest of the night, it was not so good. We did however get a visit by a friend of a friend named Lynn. She was so nice. We decided to go out for dinner with her, and we found this small restaurant with great food and had a good time. That was until we walked out to our car. As I approached the car I noticed the rear window had a hole in it. Sure enough our car was broken into! Someone stole Ashley's portable DVD player off the back of the drivers seat. I tell you if this black cloud would ever leave us for a second it would be a miracle. That was all that was stolen. Of course Ashley was very upset, and did not understand why someone would do this. Of course we were just happy no one was hurt or involved. The cops came took report, and we drove back to the hotel with no window. Cold ride for everyone in the back :)

Ashley and the others just went to bed, and I may not have a chance in the morining to update. I will be busy calling the insurance company, finding someone to fix the window, buy Ahsley a DVD before we leave to come home, worry about Ally and all her tests, and on top of it we are expected to have a huge ice and snow storm tomorrow. Sounds like a great day, huh?

Stayed tuned. This trip is really testing the limits of our strength, and abilities to handle all this stress. Someone really likes to see just how much our family can handle at one time. Good night!!!


REMINDER: we will be placing password protection on Allys site starting Jan. 1st. Please know this is for good reason. If you want to continue to follow Ally, please send us your name, how you know Ally and an email address so we can send you the password. Forward your information to aajsheintz@yahoo.com. We will put this reminder on every update from here until the 1st.

Tuesday was an extremly long day. Ashley and our mothers spent most of the day at the PP&G building looking at the different holiday decorations and ginger bread houses. They had fun. Jill and I arrived early at the hospital, and spent the morning playing with Ally. It was a tough morining mentally. It took us back to the days of the NICU at Bryn Mawr. Reason was since its an open setting, you get to bear witness to everyone else's pain and suffering. Today an young boy just cried, and cried in pain. It's hard enough to deal with our own issues, but when you witness others, it makes the day that much harder. Ally didn't seem to mind the comotion. It's funny to see her in a new setting with all new people. She has adjusted amazingly well to her environment. Ally really does have an infectous smile!! In two short days, she won the hearts of the entire unit. People couldn't get over how happy she is. She just smiled that smile, and melted others hearts. It truly was a site to see!

The morning was long, and by noon, Ally had echocardigram done, an ultrasound of her liver, bowel, other abdominal organs, and we had the opportunity to re-live Ally's complete medical history by reciting it to her new GI doctor. It's always fun when you start back at; Ally was born at 33 weeks, Gastroschisis... you know how the
rest goes. No way am I going over it again today!
At 6 p.m. she was moved to the floor where she has her own private room. Hopefully tonight she will get some much needed sleep.

Tomorrow, Jill and I have a two hour class from 10 til noon to learn about small bowel transplant. Most of which we probably already read about. Sounds like fun. I really think by now we should have some degree earned with all this GI knoweledge, right? The rest of tomorrow we are not sure what is planned. We will update again later.

Thanks for all the emails wanting to continue to follow Ally. Look for the password closer to the 1st. Its going to take awhile to compile the mailing list. Our email was flooded with responses today. Its great too see you are all praying and keeping with us through this fight!Please don't panic if you miss the password, just contact us. There is a really good reason for this. Once the site is secure, we can let you know more.

REMINDER: we will be placing password protection on Allys site starting Jan. 1st. Please know this is for good reason. If you want to continue to follow Ally, please send us your name, how you know Ally and an email address so we can send you the password. Forward your information to aajsheintz@yahoo.com. We will put this reminder on every update from here until the 1st.

We finally have a chance this morning to update you on the trip so far to Pittsburgh.

Sunday morning, Ashley, our mothers, and myself left home at noon to make the trip by car. It was an uneventful trip until we got closer to Pittsburgh, and then we got hit by a blizzard!! On top of that we got lost temporaily in the city.
We finally made it to our hotel by 6p.m.

The hotel is nice. We want to thank everyone here who has sent or dropped off food and gifts for Ashley and ourselves. It has helped out greatly.

Monday morning, Ashley and the rest of us made a morning trip to the Kids museum of Pittsburgh. We spent about 3 hours there, playing and having a fun. Ashley really enjoyed herself!

Jill and Ally were delayed in their take off so they never made it to the hospital until about 1:30. Ally is currently in the IICU which is a n intermediate intensive care unit. However this is an open room setting so Ashley is not allowed to visit and Ally is not getting any rest. Hopefully today they will be moving her to a room on the floor.

As far as testing goes so far Ally has had only a couple of x-rays taken. We are headed to the hospital now and Ashley is staying with both of her grandmoms. We will update when we get a chance again.

As a final note; we will be placing password protection on Allys site starting Jan. 1st. Please know this is for good reason. If you want to continue to follow Ally, please send us your name, how you know Ally and an email address so we can send you the password. Forward your information to aajsheintz@yahoo.com. We will put this reminder on every update from here until the 1st.

Thankfully Ally has made a quick turn around since they pulled her central line. We will be heading to Pittsburgh on Monday. She is still on the vent more than she used to be but bascially back to her old settings.

We will update as soon as we are back from Pittsburgh or maybe while we are out there if we find some computers.

Ally has been keeping us busy with worry over the last few days. Over the weekend Ally started to get pretty sick. On Saturday her hemoglobin had dropped considerably so she had a blood transfusion and we had hoped that would make her feel better. Unfortunately she seemed worse on Sunday and was having more difficulty breathing. She remained on her vent all day and her settings were increased a little. By Sunday night she seemed happier and more playful, so we were hoping she was feeling better.

During the night Sunday Ally was not able to keep her oxygen sats up so they had to switch her to a critical care ventilator. She had a chest x-ray done that really doesn't look that great and looks even worse today. Also her abdomen was very distended so she had a CT scan. Thankfully that didn't show anything.

Ally is still on the critical ventilator but she seems to be acting more like herself today. She was out of the bed a played on her mat for a little while. She is napping now and having another blood transfusion because her hemoglobin dropped again. The docs are not sure why this keeps happening they think it is just because she is sick right now and her body can't make the red blood cells as fast as she is needing them.

As of now we aren't sure if Ally will get to Pittsburgh next week. She will need to be off the critical care vent and infection free. As of now she is still having positive blood cultures from her central line and from peripheral blood cultures. Later today they are going to pull her central line a place a temporary PICC line. Than hopefully get a new line at the end of the week. Probably by Friday we will know if we are going to Pittsburgh or not.

Please pray that Ally's infection clears and that she makes a speedy recovery so that we can travel to Pittsburgh for this evaluation.

I will update towards the end of the week unless something changes.
Jill

Well, we are still at duPont. Ally will be staying here until we go to Pittsburgh which won't be until December 12th. The team out there said that it would be better if Ally waited until her line infection clears. They said that the evaluation process is very intense and it would really wipe her out if she also had to battle an infection.

So now she will fly air ambulance to Pittsburgh and than at the end of that week she will be flown back to duPont. Hopefully she will be able to be discharged shortly after coming back to duPont. More than likely she won't be home before December 19th.

Ally's G-J tube is still out and they are not going to place a new one until we come back from Pittsburgh. They think she more than likely got this last line infection because they had to manipulate her bowel too much when they tried to put the G-J tube back in and she translocated some of the bacteria into her blood. They are afraid that if they try again she will get another infection and will have to miss her appointment in Pittsburgh. For now she is just getting TPN and receives her meds through a
G-tube.

They have weaned her oxygen and her vent settings, hopefully next week she will be back to her baseline of just CPAP and minimal oxygen. She has still been very happy. We brought in some toys from home so she has been busy playing her piano alot.

Ashley went to see Santa Claus the other night and she actually loved it! He even sent something back for Ally. Now the girls have a countdown calendar in Ally's room and tomorrow Ashley and I are going to decorate Ally's room with some Christmas lights.

Have a nice weekend and we'll update next week.
Jill

Surprise, surprise, is what Ally had in store today. Ally the last few days has been running a temp. and not feeling so well. So this morning, Jill and the nurse had an appointment to bring Ally to duPont for cultures, and a new tube placement. However, on the way, Ally started to destat into the 40's, and just as Jill was about to change her trache she came back, and did not look so blue. A few minutes later, things proceeded to worsen, the oxygen tank started to leak and they could not get oxygen to Ally. Jill had to call an ambulance to come get Ally. Till the ambulance got there things were under control and the tank was working but there was not enough oxygen left to take Ally to duPont. So, Ally went to Pottstwon ER they did cultures and stabilized her. They then transported Ally to duPont.

So here we are, yet again. Hotel duPont!! Looks like Ally has another line infection. We spoke with transplant today to see if Pittsburgh would move up the date to seeing us. We are scared that if we waste anymore time with all these infections, that we won't get the chance to get on the list to have her transplanted in time. There is definitely a sense of urgency. Transplant is planning on calling Pittsburgh tomorrow because they agree that she needs to be listed as soon as possible.

Right now Ally is resting comfortably she is still requiring quite a bit of oxygen. They also put her ventilator on a rate so now that is delivering some of her breaths. We will update tomorrow hopefully with more info.

Hope everyone had a very nice Thanksgiving. Our day was busy as usual. Of course it did not go a smoothly as planned. We started the day with Ally's GJ feeding tube coming completly out of her belly. We called the hospital, and they said that we did not need her to come in that day, but would need to come in Friday.

So the rest of our Thanksgiving day went on as planned. After two dinners, some running around, and tube popping incidents complete, we made it all home with full bellies. . .well all except Ally of course.

Friday, we took Ally to duPont to have her tube replaced. Again, things just never go as planned. They were not able to get the tube placed in radiology. Every time they tried to advanced the tube into Allys bowel, the tube would coil back into her stomach. This was because they did not have the correct length of tubing. So they placed just a G-tube into her belly, and for now Ally will wait until next week to have a scope used in order to get the tube back into her bowel.

After a 5 hour trip to the hospital we were able to come home. It would be a miracle if we could go just one week without having to go to the hospital. Oh well, I guess that is just our lives for now. The good news is we are home today, and plan to stay home, and just settle here and enjoy a quite day.

We will update again as soon as things change or happen. Don't worry, things are always changing in the Heintz family :)

Today was yet another long day. We had a family meeting today with both GI and transplant to discuss Ally's future health, and the decisions that are ahead of us. We are now clear, that without no doubt, Ally will need to be transplanted with a small bowel and liver, (possibly even a stomach, which remains to be determined by Pittsburgh) in order for her to live.

We had this meeting to figure what life would be like if we choose not to transplant her. We learned that life for Ally would be filled with continuous infections, and possible liver failure from her TPN again. In fact some of the infections most likely at some point would kill her. We also learned that even though Ally has enough bowel length to absorb nutrients, the fact of the matter is that her bowel just won't work. This was most likely caused in utero. Therefore transplant seems to be the only option.

In the meeting we also discussed a plan of how things work between both hospitals, and the risks of the surgery. Hearing all of this information, is not only overwhelming, but has shown us what exactly lies ahead of us. Next year is going to be the most challenging year of our lives. We were told to expect at least a 4 month stay if not more in Pittsburgh. Some good news from the meeting is the results that have been achieved these past few years tranplanting the small bowel, have been great! Those things are always good to hear, knowing this is the road for sure that we will travel. Many other things were discussed, but I will wait to fill you in more once we have everything from Pittsburgh.

Oh by the way, Ally just arrived home!!!! They cleared her infections, and she was able to come home this evening. If anything changes we will update again soon.

Since our last update things had been going pretty well. That was until Ally started running a temp Sunday afternoon. The highest it went was 101.5 but we can't take any chances with Ally because of the central line.

Yesterday we did labs like usual and I called the hospital to let her docs know that she had a temp. They asked me to get a blood culture so we took that to Phoenixville Hospital yesterday. Unfortunately transplant called me this morning and said that the culture was positive for two different organisms. We won't know the species until tomorrow.

Ally has been acting fine other than the temp and needing a little bit more oxygen nothing else is going on. We are hoping that this is not the same bacteria that grew before that was antibiotic resistant. The docs said all of this bacteria is from her gut because it gets bacterial overgrowth and than she translocates some of that bacteria to her blood system. Nothing will probably keep this from happening except a new small bowel.

We are hoping to get out of here on Friday. They will do another culture tomorrow if it stays negative till Friday they will let us go home. We will update with any news.

Ally went to the OR on Friday and had a new central line placed. Everything went well. So well, that Ally was able to come home!!

Ally has been doing fine and is enjoying being able to spend time with Ashley and all her toys.

We finally have a date to make our trip to Pittsburgh, it will be for December 12th. We will leave the day before and will spend one full week there having evaluations done.

Thats all for now, we will update again soon if anything changes.

Happy belated Halloween! Shane and I are hoping to go home tomorrow night so if he has time maybe he can put up some pictures of the girls in their costumes. They of course were adorable. Ashley was both Belle and Cinderella and Ally was the cutest Minnie Mouse!

Not much has been happening since the update last week. Ally's PICC line has been working pretty well and they had taken a culture from it last Thursday. The culture has remained negative and the plan is for Ally to get a new central line on Friday and than to come home on Saturday.

I had the chance to speak with a transplant coordinator today from Pittsburgh. We set it up for Ally to go out there for consultation on Monday December 5th. However, after that conversation I told Shane the date and he has a course he is scheduled to take that day in Philadelphia. So, tomorrow I am going to call out to Pittsburgh and see if Ally could come the following week.

We are trying to stay very positive about our trip to Pittsburgh. We have had a lot of ups and downs with Ally since the transplant and I think in many ways everyone is very frustrated including her doctors. We are looking forward to a fresh perspective on things.

Thanks for all the prayers and hopefully Shane can put up the Halloween pictures soon!

There has been a lot of developments with Ally in the past couple of days, which is why we decided to wait until today to update. I'll try to start where we left off.

Today Ally had a PICC line placed which is a peripherally inserted central catheter. This was placed in her arm and is held in place by a dressin not a suture like a central line. It was placed with ultrasound guidance and they obtained access fairly easily. Now she will have her central line removed. Since the bacteria Ally had never grew from trache cultures they had to assume that the line was the source of the infection. She will now have this PICC line for approximately one week and than hopefully they will be able to place a new central line.

Of course all of this depends on her cultures for the next couple of days. They will draw a new culture from her PICC line. If this would grow the same bacteria than they would have to begin treatment with an antibiotic and hope that they find one that will kill the bacteria. Again, Ally has still not been acting sick, she has been just as happy as always.

Onto the heavy stuff! On Sunday we had a lengthy discussion with Dr. Casas, one of the transplant surgeons here at duPont. She informed us that she feels Ally is in a chronic state of sepsis (infection) and that it would be in her best interest to be taken to Children's Hospital of Pittsburgh for a consult on a small bowel transplant. This is the news that Shane and I have feared all along. The small bowel is the most difficult organ to transplant and they haven't been done long enough to even see long term survival rates.

Currently there are only three intestinal transplant centers in the United States and Pittsburgh's is the world leader. We are hoping Ally will go sometime in November for her consult. This is a week long stay with Ally as an inpatient and she has numerous tests performed. Shane and I will be meeting with tranplant coordinators, surgeons, social work, and psychologists. We are hoping maybe our parents can go to so that they are informed and can help us take Ashley.

I am adding a link for Children's Hospital and you can read more about the transplant and there facilities. The docs there were informed of the bacteria that Ally has and said that they would still consider her for transplant. We hope to have the date for her consult later this week. As for now Ally will remain here at duPont until they are able to place a new central line and until they have cleared the bacteria or at least have exhausted all attempts of clearing it.

Please pray for a miracle!

I just read Shane's most recent update from Saturday, and I felt I needed to comment further although at this point we don't have to many details. Everything with Ally has definitely taught me that Shane and I hear and deal with things very differently. Which is good because it keeps us balanced. When I have a down day he is up for me and when our troubles get bad and he is down I stay positive. This balance is part of the reason that we have made it this far and that we still have a marriage left.

So to get back to the reason I am writing. It is true that Ally has had some cultures that grew a rare bacteria ( it is actually a mutated form of a common bacteria) and it can be antibiotic resistant. This was more than likely the reason Ally spiked her most recent temp and probably the reason she has been needing oxygen for the last month or so. I want everyone to know that Ally has been acting fine. She is just as active as ever and of course just as happy.

There is an antibiotic that has been effective in some cases. A sample of Ally's particular bacteria was sent to Christiana Hospital and they will try to use this antibiotic on it. If it is successful they will then begin to give this medicine to Ally. Also no one has said that this will be terminal. We were told that in many cases it can be terminal and they are concerned that is possible with Ally because she is so immunosuppressed due to the rejection meds that she takes for the liver transplant. Again the fact that Ally does not act sick makes me very hopeful. I am hoping to get more information tomorrow and I will try to update again tomorrow night.

The good news Ally's liver functions have come down. They have been treating her with yet another antibiotic to decrease the inflammation in the bile duct. It seems to be working which means they hopefully will not have to place a stent in her bile duct. The transplant docs are hopeful that Ally will come home this week. She has not required any additional support from her ventilator and as long as she has no more fevers. I'm not sure if the PICU staff and the infectious disease docs are ready to discharge her yet.

Shane was right about this being the hardest thing we've ever faced. I am unable to think about Ally not being here, even though the thought has always been in the back of our minds. I am especially having a hard time dealing with the fact that Ashley would not grow up with her sister. I hope this update clears up some of your questions. I think when Shane writes the updates that he writes exactly what he is feeling or thinking. When I write the updates I edit my feelings and fears, mostly because I don't want to alarm anyone and I don't want people to think the worst. No matter what we need to stay positive and we must never give up hope. As many of you wrote in the guestbook, "miracles do happen" so please pray for Ally to have one.

Jill

If there was ever a time Ally needed you, it is now! Please say a extra prayer for her these next couple days. On Thursday we were told of a bacteria that may be developing in Ally's lungs. This bacteria has no know cure and is terminal. It has not yet been confirmed as of yet, and could take a week to be sure, but all the symptoms point in that direction. We were told of some drugs that are being used in Europe, and that a doctor in Wisconsin has had some success with these drugs to combat the bacteria, but there is no guarantee.

On top of all this, Ally's liver functions have gone up and it seems one of her bile ducts is enlarged. They are treating this with medicine and as of now are not planning anything else as of now. The thought is she could have a stricture of one of her bile ducts. This is yet another hard blow to deal with.

Finally, if things could not be worse, Ally's GJ tube site is just about as bad as ever. So bad they had to stop her feeds because the drainage was so much. This will have to be addressed ASAP.

So as you can see, this week has been our most difficult time ever. To hear that Ally could be taken from us is a feeling that cannot be explained in words. There are so many things running through our heads right now. We've have worked so hard, and spent so much energy fighting, that to hear Ally could be taken from us from a bacteria, is not fare! We will not give up, and we will continue to fight just as Ally is doing. As long as there is hope, we still have the faith she will be ok.

Sorry for such a short update, with little detail, but our time has been very limited and much of it will be spent with our girls at the hospital these next few weeks. The hope is to get Ally home to be with us as a family. Please pray for Ally to make it through these weeks ahead, she needs your prayers now more than ever.

As you all might have guessed Ally was admitted to duPont yesterday. She is in the PICU of course and she even has her old room. Thankfully she is doing well and has not run a fever since yesterday morning.

She has had the full run of tests. Yesterday they took a chest x-ray, did blood and urine cultures and drew labs. Today they did another chest x-ray and said that they saw some ares of haziness so they decided to do a bronch and get some specimens from her trache and lung tissue to see if there was something brewing that they just haven't caught yet. The bronch looked good so we will just have to see if those cultures grow anything.

Onto the liver. She had an ultrasound done today because her liver functions were elevated a little, especially her GGT so they wanted to have a look at her bile ducts. As usual they couldn't see them real well on the ultrasound so tomorrow she will have a CT scan to check the bile ducts.

She also had an EKG done today because her heart rate has been averaging around 160bpm and only going as low as 140bpm when she is asleep. We'll find out the results of that tomorrow. I am not too concerned about this because she has done this in the past and it has never turned out to be anything.

Dr. Katz came by to have a look at Ally's G-J site. She said that there is no simple fix for this and she will definitely need surgery to repair it, the question is when. First Ally will need to be off steroids and she is on the lowest dose she has ever been on so hopefully she will be done with those soon. Then they would prefer to wait until springtime so that Ally is not in the hospital in the winter and exposed to all the respiratory viruses that occur than. We can wait until spring if we come up with a plan to control the drainage from the G-J site which is causing her skin to breakdown and could lead to more wounds.

To top the day off Shane's parents were supposed to come visit and bring Ashley down to me to stay for a couple of days. By 7:45 they weren't at the hospital and I was getting worried. At 8:00 they called to say they were not coming. They had been borrowing one of our cars because last week they had hit a deer with their car. Needless to say right before they got onto the highway the engine and brake lights came on and the car started to smoke and smelled like it was burning. The were unable to steer the car but there was a garage right where they were so they got out and the mechanic looked at it. Thankfully everyone was safe and hopefully the car will be fixed tomorrow.

We settled for talking to Ashley on the phone and looked to the bright side which is, since Ashley isn't coming until tomorrow afternoon I will be able to go with Ally for her CT scan.

Our life has been crazy lately or maybe for the past two years, but we are trying to stay positive. It is definitely hard though and today was a tough day for me but than there is always hope that tomorrow will be better or maybe at least we'll win the powerball!!!

Take care, and please pray that Ally's CT scan goes well and that we can hopefully come home again on Thursday.

Jill

This past week things have been extra difficult. Last Monday Ally started not feeling well, and ran a low grade fever. When the transplant team found out about the fever, they wanted Ally brought down to the hospital to be admitted to the PICU. Jill refused. Ally was at the time happy. Why should she sit in the hospital for a low grade fever? Needless to say, they said she could stay home, as long as the fever did not get worse. Ally did stay home all week. However, liver functions were up a bit throughout the week and her stomach does not want to stay in her belly. More labs were drawn for the liver, and cultures for the fevers. On top of all that is going on with Ally and her cold, Ashley now is now sick!

It just never stops. This morning at 4 a.m. our nurse called for us saying Ally had a temperature. As the morning went it only got higher. Ally has an appointment today, so we will see if this week she gets to return home, after missing out on a week at duPont last week. If I know our luck, we will get to spend the week there.

I know we use to say, no updates or news means things are good. Well I was wrong. The reason for lack of updating is we can never get a chance to stop and breathe for a second. The saga continues...

If you have a chance check out the Interview with God on Ally's list of sites. After reading it for the first time, I felt as if it was reading my mind, they were all the things I've either learned or have felt with having Ally in my life.

What a busy week. If it can happen, it happens to us. Ally had two visits to duPont this week. One was scheduled, and one was not.

The first trip it seemed things finally were going our way. Ally has continued to gain weight, and for the second week in a row we have been able to reduce her TPN amount. Last week we went down to 14 hours a day, this week we reduced more calories from the TPN. We also were able to reduce the amount of steroids she gets since her liver function has been so great. We also went to full strength formula which will give Ally some extra calories per hour.

Now some of the bad news.

Ally has continued to have healing issues with her GJ-tube area. We tried to cortorize it some more, but that has not worked out so well. Some of the bad news earlier in the week was that the doctors thought part of her bowel along with her stomach was now sticking out of the hole in her abdominal area. This meant surgery, and more set backs on feeding. Then later in the week, the transplant team took a look at the GJ area, and said that it was not her bowel, but just stomach tissue. They said we could not do anything until Ally was completly off steroids. Stopping the steroids then would help the healing process. One reason why she now doesn't heal as so as it is. Surgery then could be done maybe in the spring if the area does not heal by then. The questions that remain are, can we still use the same site for a feeding tube...? will we need to go back to feeding tubes down Ally's nose...? or will we need to create another hole in her stomach.

All of this has created a lot of stress for all of us. Just when we think we are making progress, we get knocked to our knees. Someone sure likes to set the challenges high for both Ally and us. Through it all, Ally has continued to grow and keep that smile. She had changed so much in the last few months. She understands everything you tell her, and is even learning some sign language. Physically she is also stronger. She still does not walk, but is thinking about crawling. For good reasons, I think she is afraid of falling on her belly. I would too, if my stomach was hanging out. Anyway, she continues to try and grow as best she can. We do not push her too much.

We also have been trying to get out of the house as much as possible with the girls. Yesterday we took a day trip to the aquarium. Ashley of course was afraid of the dark hallways and music, while Ally was loving every minute of it. Seeing her watch the fish and other animals, makes it all worth it. She was all smiles!! We want to give Ally as much exposure to life as we can, as long as we can continue to have the strength as parents to keep up with all the work around us.

Continue to pray that Ally's wounds heal, and feedings continue to increase. Also be sure to see the new photos.

If I thought last week was crazy this week certainly topped it! Ally came home from the hospital on Thursday afternoon. But as luck would have it she had to go back down and spend the day there on Friday too. Right now she is sleeping comfortably here at home.

Luckily Ally never seemed too sick from this past last line infection. She had one positive culture on Monday and everyone since than had been negative. So, we were all set to come home on Thursday. However, Thursday morning when Ally's day shift nurse came on she found Ally asleep in bed with a small puddle of blood beneath her. Somehow her central was cut all the way through and she was bleeding out onto the bed. Her nurse quickly clampled the line off and called for some help. Because of the amount of blood they figured the line was cut for about an hour. The were able to repair the line and Ally seemed to be unaffected by the whole thing.

Since there was a tear in the line they decided to do another blood culture since the line was open and laying on the bed it could have been exposed to bacteria. Like I said as luck would have it we left the hospital Thursday afternoon and Thursday night around 9:30 I got a call from the hospital telling me that Ally's blood culture that was done after the line had torn had grown bacteria which means another positive blood culture.

Friday morning we headed back down to good old duPont to have another blood culture done and to start a new round of antibiotics. It was another long day there, we sat in day medicine for 3hours to receive a half hour dose of medicine. But thankfully Ally didn't have to stay.

Otherwise things have been okay. Her G-J tube site is still a mess but we are working on it and I have to beleive that it will get better. We had a birthday party tonight for Ashley so Shane will update with some pictures soon. Shane and I and Grandmom and Grandpop got the girls a swing set. It was kind of birthdays/Christmas gift. Anyhow they both love it and I think we will be spending every day outside on it until it snows!

Take care and pray for a calm relaxing week for everyone!
Jill

Anyone who was at basket bingo will be shocked to read this but Ally is back in the hospital. Monday morning she began running a temperature and was admitted yesterday afternoon to the PICU. She seems to be acting okay. We are still having a lot of problems with her G-Jtube so hopefully we will get some of that resolved while we are here. I just found out she grew gram negative rods from her central line culture but her peripheral culture is still negative. We also think she has something going on with her GI system because the drainage from her G tube has a very strong odor. Hopefully we will know more soon! Ashley got her cast off yesterday and seems to be doing well with her arm. I will update again tomorrow or Thursday.
Jill

This was one of those weeks where I felt like there was a big black storm cloud following me! Ally is doing fine now and she is at home but nothing seemed to go right this week.

Monday I took Ally's labs to Phoenixville hospital. After dropping all of the vials in the parking lot. 15 minutes later I located all of the tubes and took them inside. Than I drove like mad to get to work even though I was already late. When I got inside I found out my first three patients had cancelled and I didn't even have a patient until 10:45. At least I had some time to chill out. Unfortuantely Ally's nurse called soon after that to inform me that Ally's G-J tube had popped out again. This had been happening daily and we have been lucky that we keep catching it before it comes out completely.

Monday night I'm putting Ally to bed and when I change her diaper I notice that her G-J tube dressing is wet so I decide to change it. I pulled of the dressing that we have been keeping taped down so that the tube doesn't just pop out. Well just my luck I pull the tape off and Ally decides to cough and the pressure causes the tube to pop out and fly across the room. This is not an exaggeration, it almost hit Shane in the head! Of course this is at 8:15 and Ally has yet to recieve her 8:00 meds which means with the tube out I now have no way to give her any meds including her rejection meds!

So I call the hosptial and give them my information and they page the doc on call which is actually Ally's primary doc. After waiting for a call back for 45minutes I decide to call the hospital again. The operator says "Oh yeah you called earlier I messed up you phone number so I didn't call the doc yet." Finally I get a call back. She says to try and put the tube in but we aren't sure if that will work because now it has been out for an hour. Thankfully it went in and Ally slept through that. I had a difficult time giving the meds because the tube must have coiled in her stomach, so decided to just give her rejection and her high blood pressure meds.

Tuesday afternoon we headed to duPont to have a new tube placed. Prior to placing the new tube they took and x-ray and now Ally's tube was in her esophagus so thankfully she wasn't getting sick and now damage was done. After working on it for an hour they finally got the tube in the right place. Ally was very upset because she had to be strapped down to the table so she could not move her legs and I had to restrain her arms. We were both worn out but we had to head over to the GI department to see if there was anything else they could do to help the tube stay in place.

Well if I thought Ally was mad in radiology she was really mad in GI because they decided to use silver nitrate to cauterize some of the excess tissue to try and help the hole get smaller. The also gave us some special ointment to keep on the area and a special type of dressing.

Wednesday we got to go back to duPont for a regularly scheduled checkup with her primary GI doc. We couldn't see him on Tuesday because he was away at a conference. ( the bad luck keeps continuing!) Todays and fifty dollars worth of gas later Ally's G-J tube site looked even worse. However her overall GI checkup went very well. She has gained a significant amount of weight in the past month so they are backing off on her IV fluids and are allowing us to increase the concentration of her feeds. This of course is fantastic because she needs to get off of TPN!!!

Unfortunately they needed to re-cauterize some of the tissue so again Ally was very upset and they did a lot more than they had done on Tuesday. We finally made it home Wednesday night around 8:30 with a very exhausted Ally. Her tube site is looking a little better but still pretty sore. Plus because it has been draining so much the skin around it is also sore. We go back down next week to have it checked again. We also do labs again on Monday, last weeks labs looked great so we got to decrease some of her steroids. She has been on these ever since transplant which was a little over seven months ago. They typically like to get kids off of these by three months post transplant but we just haven't been able to yet because of all the fluctuations in Ally's liver functions. Hopefully we will get there soon.

So to sum things up it was a very long week however we did have a pretty relaxing day today. I swear I should write a book because some of this stuff is pretty entertaining.

There is going to be another fundraiser for Ally this weekend. It is a basket bingo on Sunday at Bally Fire House. Doors open at noon and there are still about forty tickets available. For further information contact Mary Kay @ 610-367-6693. I am hoping to bring Ally and Ashley at least for a little bit of time but than again that is two hole days away so who knows what could happen! Take care and I'll update again sometime next week!
Jill

Sorry for the long delay in updating, but as you all know the girls keep me very busy. Ally had a great week last week and a wonderful check up last Thursday. She had even gained about a pound since we had left the hospital two weeks earlier.

Friday morning Ally ran a temperature in the morning but was acting fine. I decided not to call the hospital and to wait and see how she was later that day. The rest of the weekend she was fine until late Sunday evening. She began to have some difficulty breathing and I had to give her an extra breathing treatment. Also her stool had an offensive odor which sounds dumb I know but remember Ally does not eat food so I change in stool is a big deal. Sunday night Ally struggled with her breathing and by Monday we decided it was best to give her some oxygen.

With the oxygen in line she was fine and was requiring no change in her ventilator settings. We drew labs and took a stool sample Monday morning and I dropped them off at Phoenixville on my way to work. Then I called her docs and informed them of what was going on. Once Ally had the oxygen in line she was active and played all day and only required a 1/2 liter of oxygen. When I got home from work Monday transplant called to say that they wanted Ally seen and a chest x-ray done. So Ally her nurse and I headed to duPont around 3pm.

The chest x-ray looked fine and Ally was sounding better too. While we were there they drew some additional lab work plus took a blood culture from her central line just to make sure there was no line infection. Tuesday morning Ally sounded a 100% better and we were able to turn the oxygen off later that day. Unfortunately I got a call saying her liver functions were up and that she had bacterial growth on the blood culture. However, since Ally seemed to be doing better no one was overly concerned and we think the blood culture might have been contaminated. So we repeated labs this morning and took a new blood culture. The labs looked better today except Ally's white blood cell count has gone up which always means possible infection.

The stool sample the other day was negative for C. diff and the blood culture taken this morning we will know about tomorrow. Ally has been happy the majority of the week and continues to amaze me by how much she is able to endure. Ashley has been doing great with her cast and hasn't complained at all about that. She began Sunday school this past week, she is growing up so fast!

Please pray tht Ally's blood culture is negative and that she gets through all of this most recent episode without a stay in the hospital.

Jill

This weekend the plan was to go to the mountains to enjoy some time with family away from the hospital. Just our luck, we would not miss a weekend without an emergency room visit.

The weekend did not start off so hot. Thursday night at midnight, Ashley woke up with 103 degree fever, and had thrown-up all over her bed. After spending hours cleaning and taking care of her, we finally got to bed by 2a.m.

By Friday afternoon Ashley was feeling better. I think she had a 24 hour virus. Since she was feeling better we decided to make the trip to the mountains to spend Saturday and Sunday there.

Saturday we were having a great time with family. It wasn't until we got to the county fair when things got to be exciting. Ashley and Ally were having a great time. Ally finally had the chance to go on her first ferris wheel and merry-go-round ride. She had a blast!! (Be sure to check out the new pictures). Then just as we were having such a good time, our luck ran out. Ashley fell on the moon bounce ride. That's right, not Ally but Ashley this time!! We quickly decided she needed to be seen by a doctor. She was holding her arm and not allowing anyone to move it. When your up in the mountains, there are not too many choices of hospitals around, plus having Ally along we needed to go back to the cabin first to get all her meds and TPN ready before making a trip to a hospital. Poor Ashley had to wait an hour or so before we could even get to leave for the hospital.

We finally decided to take her to the Towanda Memorial Hospital. She never once cried as they examined her. Things for Ashley could not have been worse though in the ER. You see, Ashley has a huge fear of Santa Claus, or any man that looks like him. Wouldn't you know it, the doctor on call came into the room, and he looked just like Santa, long white beard and hair. If you could of only seen Ashley's face. She handled it all very well. It made me realize just how strong my girls are when it comes to pain or fear. Dr. Becker came back later after examining the x-rays, and said that she had a break just above the wrist. They put her in a half cast for now, and then later this week she will have to have a full cast put on.

As for Ally, she was surprised when we got to the hospital that we were not sending her back to the ER room. She did however have a fun time with being away and seeing the mountains, and riding on the rides. We came home Sunday afternoon, we all need some rest and we were glad we had a night nurse.

This week Ally will have labs drawn, and will make a visit to duPont for a checkup. Pray that we can advanced feeds, and continue to keep her at home with us.

Enjoy the new pictures, Shane.

Being home is so nice! Ally's baptism was great and the weather even cleared in time for the picnic. It was so nice to see so many of our friends and family. It was especially nice because so many people that were there had never had the opportunity to meet Ally before this time.

Otherwise things are going well. We drew labs yesterday and I dropped them off at Phoenixville hospital on my way to work. Her labs were pretty good, that means we will be able to start adding a special powder to Ally's formula which increase her protein and calorie ingestion. Hopefully if she tolerates this addition they will be able to decrease her IV fluids a little. She is still receiving IV antibiotics for her most recent infection. They should be done on Saturday.

We are planning a few days away in the mountains this coming weekend so I probably won't update again until next week. Hope everyone has a wonderful weekend and a great holiday.

Ally made it home yesterday. Her trip to the OR went well. They had tried to first place the new central line in her right side of her chest, but could not find a good enough vein. So the line is now in just about the same place as the old one , in her left chest. The poor girl has so many bruises from trying to get the line placed, and from all the IV lines placed while not having the central line.

As always though, Ally handles it all with a smile! She is now at home resting comfortably.

We look forward to seeing you all at the baptism, and if you RSVP at the picnic. Church starts at 10:30. My suggestion would be to get there early, it seems we could have quite a turn out.

Don't forget to check out the new photos. Enjoy.

Ally will be going to the OR in the morning to get a new central line. The infection in her old line would not clear, so they had pulled that line yesterday. She has had some peripheral IV's placed so that she can receive IV fluids. If all goes well tomorrow we should be allowed to come home tomorrow afternoon.

Ally had a big milestone today! She was out of her crib playing on a mat that we put down on the floor for her. She was sitting in front of the crib and grabbed onto the bars and pulled herself up into a standing position. She was very proud of herself and continued to stand and play at the crib for a few minutes!!

Anyone who is planning to come Sunday to the baptism or picnic please do not bring anything along. The food has been taken care of and remember NO gifts!

We will try to update tomorrow night to let you know how Ally made out. Pray for a good trip to the OR and that Ally gets to come home tomorrow.

Just a quick update to let everyone know that the Baptism and picnic are back on for this Sunday the 28th!

I just got done talking with the surgeon and she said that if Ally gets two negative cultures(another culture was taken last night and one was taken this morning)than they will let her go home on Thursday with antibiotics at home. If those two cultures are positive than they will pull her central line and place a new one on Friday. In which case we would go home Firday afternoon or Saturday morning.

Ally has not run a fever since Sunday and she has been very happy and is busy keeping all the nurses and docs entertained.

Anyone who needs information about the baptism can e-mail or call me. Please try to RSVP by Friday. All the information for times and location for the baptism and picnic are listed in Ally's update from August 17th. If you have questions or need to RSVP the best place is to e-mail at aajsheintz@yahoo.com. My cell number is 610-698-3181 you can leave a message there, and our home phone is 215-234-9686.

Thanks again for all the prayers, we hope to see everyone soon!

It looks like Sunday's baptism will have to wait. Saturday into early Sunday morning, Ally started with a temperature. Needless to say she has been re-admitted back to duPont on Sunday morning.

Ally's temperature went has high as 104.8 We sent for cultures, and the first one came back positive for infection in her central line. They are going to treat Ally for 7 days on antibiotics, and then next week, there is talk of pulling her central line and placing a new one.
They are going to do this because she has had numerous repairs to the line, and the line has been in that location now for 9 months.

This morning Ally was resting comfortably, and hadn't had a fever for a few hours. So hopefully the infection will clear soon. A line infection can be a very serious issue, especially with how things go with Ally.

So, it looks like another few weeks in the hospital and living in Delaware. Sorry to anyone who had changed their plans to see Ally's baptism, but we are going to try to see if there is time in September to try again. We will continue to let you know more about how she is doing, and what the plans are for her baptism and picnic soon.

Yet another eventful day!!! It was actually a very nice day up until about 6pm when Ally's G-tube balloon came out. Luckily the whole tube did not come out!

Let's rewind a little so you all can get the full effect of our fun evening. On Monday I had Ashley at the park for a little bit of mommy and Ashley alone time. She told me she thought we should have a picnic in the park. What a great idea, we can have it on Wednesday night and we'll invite Gram and Pop too! So we made our plans and Ashley had been looking forward to her picnic ever since. More importantly she was looking forward to an evening of playground fun.

We arrived at the park around 5:45, we set up in our picnic area and Gram and I took the girls to the swings while the guys were grilling. (Don't forget to check out the new videos of the girls swinging.) Around 6pm Ally started to cough a little and then I heard a funny sound coming from her belly. I picked up her shirt and saw her G-tube was hanging out with the balloon still inflated. Panic set in!!! I rushed down to Shane to get the car keys because we only have one syringe for the G-tube balloon, which of course was at home in Ally's room.

On my way home I called the hospital and talked to the on call doc for transplant. He said to deflate the balloon push the tube in and re-inflate the balloon but just inflate it a little. Well the tube stayed in for about 5 minutes. Needless to say after an extensive tape job the tube is now staying in place. This means we are off to duPont tomorrow to have Ally's tube checked in interventional radiology. Hopefully we can have her labs drawn while we are there so that we don't have to go back down on Monday.

Ally of course was a trooper and laughed and played through all of this. Ashley was a little upset because Mommy left so suddenly but after dinner she got to play for a while on the playground and the night seemed to turn out okay even after all of that!

On to some good news. We have finally made plans to have Ally baptized. Anyone who is reading this and who has followed and supported Ally's progress is invited to attend. Her baptism will be Sunday August 28th at 10:30a.m. at St. John's Lutheran Church in Boyertown, PA. Afterwards we are planning a celebration picnic at Green Lane Park at 2:30p.m. This is just a picnic, please NO gifts for the baptism. Ally has not been able to attend many other events that have been held for her and we just thought a picnic would be a nice way for people to get to meet Ally. I am listing the addresses below, please use mapquest for directions or when you call to RSVP ask for directions.

Baptism: St. John's Evangelical Lutheran Church
45 North Reading Avenue
Boyertown, PA 19512
Sunday August 28th @ 10;30

The picnic will take place at Green Lane Park, Deep Creek Lake, 2144 Snyder Rd. Green Lane, PA 18054. You can enter the park through Snyder Rd, which you can turn onto from Deep Creek Rd. The iron bridge that enters the Park from Rt. 29 is closed. When entering from Snyder Rd. the picnic will be on your left hand side in front of the playground. There is a small pavillon but plenty of shade.There are plenty of picnic tables but please bring lawn chairs if you would like. If you are attending both events and need something to do to kill time in between, there is boating, biking, hiking, and fishing at the park . For more info and further directions you can visit www.Montocopa.org/Parks.

Please call our house to RSVP for the picnic or for further directions. 215-234-9686 you can also email to aajsheintz@yahoo.com. Please RSVP by Thursday August, 25th.

Sorry this is such short notice but, that is planning with Ally! Remember NO gifts allowed.

Not much news to report since being home. We are still trying to get settled back into our home, after being in the hospital for 5 weeks. It was beginging to feel like our home was actually just a summer house to visit.

Ally has being doing fine. We sent for labs the other day, only to have them messed up by the lab in Tennessee. So this morining JIll made an appointment with Phoenixville Hospital to have our labs worked through them. We'll see how this works out. Yet one more hospital to add to our list. Other than that, Ally has being enjoying herself and her time at home. She currently is still at 8cc/hr. on the feeds, which hopefully we will be able to advance this week.

So you are all aware, Ally's next benefit is approaching fast. Sorry for the delay with posting it to the site, I know many of you already have your tickets, but if you hurry, I'm told there are still a few left. Most likely to be sold out this week. Heres the information:

Basket Bingo for Ally, September 25th 1 PM at Bally Fire Co. for tickets and directions call LuAnn at 610-367-0363. 

Thanks again for all the help and prayers you continue to send Ally and our family!!

Yeah!!! We finally made it home!!! Around 3pm this afternoon Ally, Ashley, Grandmom and myself, left duPont and headed straight home! Of course this was all after some more exciting events.

Shane last updated on Saturday so I'll pick up where he left off. Saturday evening we had come home to spend a night at home. We had Grandmom lined up to visit Ally Sunday morning so we didn't have to be back at the hospital until Sunday afternoon! However I wasn't thinking and decided to go grocery shopping Saturday night since we had no food in our house! This was obviously the jinx!! Sunday we got up early and went for a bike ride. When we got back home I called the hospital to check on Ally only to find out that she was very unhappy and that her liver functions had gone up yet again.

Not wanting to waste any time the docs decided to start Ally on high doses of IV steroids, again. When I arrived Sunday afternoon she was back to her normal happy Ally. Monday morning rolled around and yeah, her liver functions had started to come down again. Unfortunately they told me that they would be giving Ally a complete dose of IV steroids which meant we would have to stay until Friday. I expressed that I was very unhappy with that and after thinking things through the docs decided it was best to get Ally home and would allow me to do the steroids and IV antibiotics. This meant Ally could come home on Wednesday.

Yesterday, I arrived at the hospital, met by the transplant team informing that Ally's one liver function had skyrocketed over 1000 this was obviously concerning, however, her other two liver functions had continued to come down. This all meant that Ally needed an ultrasound to see if a bile duct had become constricted. That would mean Ally would need to have a stent placed to keep it open. Of course they could not see anything on the ultrasound so she need to go for a CT scan. The problem with a CT scan is that the patient ( if a child) usually needs to be mildly sedated or asleep so that they lie still for the scan. Ally does not sedate easily!

After her 4th dose of 2 different kinds of mild sedation meds it became apparent that Ally would not go to sleep. Now the big guns were coming out and Ally would definitely go to sleep with a little Propofol. Finally asleep, they began to inject the contrast which is used for CT scans, through Ally's central line. What should happen?? That's right, Ally's central line ruptures!!! Now we need to clamp that off and hope that it can be repaired, yet again. Also now Ally needs to have an IV started so that they can complete the CT scan. Needless to say she was now awake again and was letting everyone know that she was not happy with the many sticks that it took to start an IV.

Finally the CT scan was completed and her central line was repaired and the best news of all, the biled ducts looked okay!
Go figure, I guess we just needed a little excitement. So for now we are home and Ally is resting comfortably, We have to draw labs tomorrow but we are not scheduled to go to the hospital until August 22nd. If we make it that long! I have not gone more than 5 days without a trip to duPont since January 3rd, so I'm really looking forward to this 10 day break!

We'll keep everyone posted on any news, I shot some new video of Ally the other day so hopefully Shane can put that on the computer soon. Thanks for all the prayers during this last hospital stay it was a very long five weeks!

Ally continues to keep things interesting. Wednesday Ally had an upper GI test done to see why things were moving so fast through her bowel, and not allowing her to advance on feeds. Much to our surprise, Ally has a loop of bowel that is dilated. When the contrast moved through that area everything slowed up, then continued down through the rest of the bowel. This dilated portion is above the area from last year where she had this problem before. That was the time she had the STEP procedure done. This portion is much smaller, and the doctors are not sure what will need to be done with it. This could mean yet another surgery. Dr Dunn is still discussing a plan of what he thinks needs to be done. We know that touching Ally's bowel, could mean more time of not feeding well, and an extended amount of time in the hospital. All the things she just does not need right now.

Thursday, Ally then started with a temperature. They started the meds to bring down the temp. It seems to them that the loop of bowel that is dilated, could be creating bacterial overgrowth casuing her to spike a fever. Also Thursday night, we started Ally on meds to control the amount of bile her gut is producing. This is one of our last options to help Ally advance in her feeds. So far it seems to be helping. The last day or so she has had less output, and better looking stools. I know that doesn't sound so great, but as Dr. Katz once said "Stool is my life". And is ours for sure right now! If things continue to move in the right direction, we will advance feeds. Right now Ally is still at 5cc/hr. 3/4 strength formula. I think the next move is to go to 5cc/hr. full strength. Then move on to whatever she tolerates from there. Hoping the whole time her liver can sustain the full strength TPN.

These last 5 weeks have been the toughest weeks yet for us since Ally has been born. Maybe its because we have not made any progress yet since having a new liver. Maybe its because we made the decision for this last surgery. Maybe its because we may have to make more tough decisions to help Ally through all of this. Or maybe its because we are afraid of what might happen next. There are so many things that could happen, and we know we can only control so much. To explain everything that we feel is impossible, and to expect anyone to understand is just the same. Thorough all of this, we will continue to keep forging ahead giving Ally every possible chance at a happy life. To give up on her when we learned she had gastroschisis was not an option then, and to give up on her now is just the same. The only difference between now and then is we are a much stronger family, knowledgable, and understand what it means to have friends and family that support us through tough times. It truly makes you aware of who is really there to help when you need it most. To this day, our parents still have not yet waivered a day in supporting us, Ally and Ashley. I guess this is were we get most our strength from. Of course there are also those few, who once were strangers, and are now closer than family.

Well enough of that, Nurse Karen said she never liked when I wrote these types of things.

Our hope is that Ally will be coming home Tuesday. I guess we will wait and see until then.
Continue to pray for Ally and her feeds. Your prayers I'm sure are being heard.

Well, this past week was a very busy week. We spent last Saturday at the hospital with Ally, and that evening drove 2 hours with Ashley to O.C. Maryland to stay over night with Jills family. Sunday, was a great day at the beach. Ashley had fun, but refused to go near the water. Later that evening, Jill and I drove back to Wilmington to spend the night with Ally. Needless to say, before we left to go back to the hospital, we had received news that Ally's liver functions had sky rocketed and her wound around her GJ tube was getting worse. So much so that you could see Ally's stomach. The hole was about the size of a quarter. We were not very happy to hear this all happened it such a short amount of time since we had left.

Once back at the hospital Sunday, we played with Ally, and she of course was nothing but smiles. I still can't figure why she thinks all this is such fun. If I had that wound, I would not be near as happy. Anyway, Monday came and Jill and I spent most the day at duPont. Ashley stayed with Grandmom and Pop at the shore. As Monday progressed, we had a morning meeting with the surgeons to discuss why and what steps needed to take place in order for Ally's wound to heal. After some talking, it was decided that only one person a day, clean the wound. That would either be the surgeon or Jill, no one else. This way Ally would get consistent care to the wound. So far it seems to be getting better. It will take some time to heal.

Monday evening, Jill and I went back to the beach, and spent all day Tuesday there. This was only Jill's second whole day without ever seeing Ally. Tuesday was fun, but it was difficult to have to much fun, knowing Ally lay in the hospital with that opened wound. I don't think it was totally possible for Jill and I to completly relax knowing Ally could not be with us. And to make things harder, seeing others with their entire family at the beach, only adds to guilt and hurt you feel being there without Ally. We did our best to show Ashley a good time, but by Wednesday, it was time to get back to our reality, and travel back to duPont.

Wednesday, Ally was so happy to see us. In fact we couldn't go to dinner until 8:30 that night, because she was scared we would not be back.

Thursday and Friday I went to work while Jill stayed with Ally.

This Saturday, Ashley came back from the shore and spent the rest of the weekend with us at the hospital. She was so glad to spend time with Ally. She really did miss her.

So as you can see the week was busy.

Now for how Ally is doing. Wednesday when we first seen Ally, we were a bit disappointed to see she was only feeding at 5cc/hr. Before Ally had the GJ tube surgery, she was at 20cc/hr. It now seems that Ally's bowel does not want to tolerate the formula as well as before. Why? Who knows. If I knew I could probably solve this all on my own. Ally the past 5 days has had stool after stool. Her poor little bottom is getting to be so sore and broken down. The good news from this is that things are moving through, and she is not having any drainage back up into her stomach and out into her g-tube bag. The bad news is that things are moving so fast, that her bowel in not absorbing the nutrients like it should, causing us not to be able to advance feeds. This is very bad!!!! And is causing alot of stress for both Jill and I. We know what this could mean. As long as Ally can't advance feeds, her TPN (IV fluid or feed) stays at a higher dose, with all the amino acids in it which destroy the liver. This is what happend before. Dr. Dunn said today that we will continue to hope things move in the right direction, the liver holds up, and we can move forward. But it will be slow. If Ally's liver starts to fail because of the TPN, she will then need a liver and bowel transplant. Which means the odds of survival are not good. We also would be spending time out in Pittsburgh for that procedure. Making everthing that much harder on all of us. To think that we haven't been able to sleep in our own beds in weeks, if we had to go across the state it would be much longer than weeks from home. Lets hope we don't have to go that route!

Now you can see why its hard to take a break and enjoy things. Its because of issues and stress like this. Please pray that Ally's bowel starts to tolerate her feeds and she can continue to take the steps forward to recovery from her wound.

Enjoy the new photos.

As usual there is some good news and some bad. Ally's liver biopsy looked good and they figure her liver levels only went up do to the stress of the surgery last week. The bad news, she got a hold of her g-j tube and pulled on it hard enough to make it start to leak around the insertion site. So now we are dealing with trying to get the hole to close a little and finding the best way to control the drainage.

Unfortunately Ally will not be making it to the beach this year. We were planning to head there this coming Wednesday instead we are hoping Ally will be heading home. Shane and I will be traveling back and forth from duPont to Ocean City Maryland on Sat, Sun and Monday. Ashley of course will be headed to the beach with us and will stay there with her grandmom and pop when we travel up to duPont. We already have Ally's nurses lined up to keep her busy and her Gram is going to come down and keeep her company.

Also yesterday Ally ran a temperature so that meant urine, trache and blood cultures. She was off antibiotics for one whole day but they had to restart them because of the fever. If her cultures are still negative till Saturday than they will be able to stop the antibiotics.

Feeds are going pretty slow, right now that and the g tube drainage are what is keeping us here. However, Ally had a great day today and we were able to turn off her oxygen tonight so she is on room air again. Unfortunately due to all the recent set backs we were told that Ally will have to keep the trache in until next spring. In the grand scheme of things this is really minor. We already have dealt with it this long a couple more months is no big deal. Plus having her off the vent makes things so much easier.

Hope to update sometime over the weekend, if not we will update early next week maybe with some beach pictures.

The last two days have not been going to good for Ally. Yesterday we had the hardest time just getting a smile. A clear sign that something was going wrong.

Yesterday her liver function levels have gone up quite a bit. Ally also had a hard time keeping her SATS (breathing) up. She just was not happy yesterday.

Today, we had a meeting with GI and transplant to go over a plan. It has been decided that one of the docs will be our primary doc and that is who we will call with problems. She will then direct that info to whichever specialist she needs to. Also they said the earliest Ally would go home would be Friday.

Ally also had another liver biopsy today because her liver functions had gone up again this morning. The biopsy was not done till this afternoon so we will not have the results till tomorrow. Tonight they are starting her on some IV steroids which starts treatment for a possible rejection episode. We will know tomorrow from the biopsy results if this is true rejection. If so that means Ally has to get a full dosing of IV steroids which means we are here until about next Wednesday, we'll see what happens.

We will put an update on tomorrow when we know some results.