Ally Heintz » November 2005 Journal Entries » AboutMyBaby - online baby scrapbooks, photo albums, videos, birth and pregnancy announcements

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Mon, Nov 28, 2005 5:30 PM
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.

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Sat, Nov 26, 2005 9:20 AM
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 :)

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Fri, Nov 18, 2005 3:00 PM
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.

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Tue, Nov 15, 2005 7:01 PM
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.

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Sun, Nov 6, 2005 8:22 AM
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.

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Tue, Nov 1, 2005 4:11 PM
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!

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