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

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Tue, Sep 27, 2005 10:59 AM
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

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Fri, Sep 23, 2005 5:00 PM
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

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Thu, Sep 15, 2005 1:37 PM
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

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Mon, Sep 5, 2005 10:00 PM
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.

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