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

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Sun, Jul 31, 2005 11:19 PM
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.

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Thu, Jul 21, 2005 11:20 PM
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.

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Tue, Jul 19, 2005 7:37 PM
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.

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Thu, Jul 14, 2005 7:06 PM
Ally's surgery went very well today. She was supposed to go into the OR at 7:45 a.m., but did not make her trip until 9:15. Ally was in the OR for about 2 hours.

She came back awake, and even gave her sister a smile. The entire surgery went well. No problems. The tubes are finally out of her throat! Even though we have seen Ally before without tubes on her face, this time was much different. I guess it just feels good to know we won't ever see her have to have tubes and tape stuck to her face.

Now that the tube is in place, we have to make sure Ally does not pull the tube out of her stomach. If she does, it means we go back to the OR. The doctors said we need a least two months of healing, and if she would pull it out then, we could re-insert it ourselves. Needless to say, Ally was only back from the OR 10 minutes, and she got her fingers caught in the tube, almost yanking it out. We need to ensure she trys none of her tricks with this tube.

The results of Ally's bronch to check her airway for any damage, turned out great! They did not see any damage to the airway or vocal cords. They also think that she does not need a longer trache. So the hope is that with these results, we can get rid of the trache for good before fall.

The liver biopsie results just came back from the lab. That news is also great!! The docotor said her liver is doing just fine. Her liver function has almost reached the normal range. It must be from all those prayers you have been sending her way. Keep them coming!

As of now Ally has been needing some pain meds, and is wanting to just sleep. As would anyone. Maybe tomorrow she will be closer to her old self.

Speaking of tomorrow, we have a family meeting at 11 a.m. to dicuss the plan of attack going forward with Ally's feedings, both with GI and transplant. The hope is to start feeding tomorrow if Ally is ready. And maybe, just maybe, coming home by next Friday or so. We will see.

We will update again later tomorrow.

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Sun, Jul 10, 2005 10:43 PM
Well if you haven't been keeping up on the latest news. You have a lot of reading to catch up on.

After a very eventful Friday, things kinda of settled down by Saturday morning. So much so, that once Ally was ready to take her Saturday afternoon snooze, we took some time to visit the local Wilmington Ice Cream festival. It gave us a chance to get away, and also the opportunity to spend some time with Ashley. She had a blast! Face painting, cotton candy, games, and ice cream where what made being in DE fun for her that day. You can check out some of the pictures in the new album from this weekend.

After spending three hours at the festival, it was time to go back to duPont. When we got back, Ally was out at the front desk entertaining all the nurses and docs. It seems that she was lonely by herself after waking up from her nap. We spent the rest of the day and weekend just being a family at duPont.

After reviewing the results from Friday's monitor check, (the one that records Ally's heart rate, breathing etc.) it seems that it was only a second or two that Ally was not getting any oxygen. The only conclusion to what may have happened is that while Ally was sleeping, she pulled on her trache, only to pull it out half way, causing it to block her airway. She would have been better to just pull it out all the way. Because of Friday's episode, the doctors ordered an ultrasound of Ally's hepatic artery to her liver to check the blood flow. Just in case the lack of oxygen may have harmed the liver even more. Turns out there were no further injuries. We have also ordered a trache that will extended further down her airway, making it harder for her to pull out. Ally thinks its a fun toy to play with. I'm sure she will be up to the challenge of pulling out a longer trache.

The rest of the weekend things kept quiet. We will see what the rest of the week brings us.?

Please continue to keep Ally in your prayers, as this week will be one more hurdle to overcome.

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Fri, Jul 8, 2005 12:50 PM
Well, we almost lost Ally last night. But thanks to nurse Jen we still have her today.

If you don't know by now how things work with Ally, and how things change, boy would you be in for some surprises, just like today's update.

Last night Ally went to bed, all was well. That was until at 11:30 when all her alarms started going off. Nurse Jen came running in, only to find Ally a nice shade of blue, and not really breathing. Her heart dipped into the 30's. As they bagged her they realized her trache was not in. So they quickly did a trache change and started chest compressions. Ally quickly came back, and soon after sat up smiling and ready to play with toys. I think she thought the staff was all there for play time when she came back around. Needless to say it was another one of those nights.

This morning Ally had about twenty people in rounds today, trying to figure out what caused her to have a brady cardia attack, and also to decide where to go from here.

As of now, we have assured ourselves of not going home for a few days, before surgery. Who knows, surgery may not even happen now on Thursday. Ally's feeds have been turned off, but GI was just in and said we may run some small amount of formula just to keep the gut stimulated.

GI and transplant are going to sit down soon together to start with a clean slate, and try to figure out the plan of attack at getting Ally back to tolerating feeds and feeling well again.

So far Ally's cultures have been negative. Of course you always need the full 48hrs. to ensure no infection. As far as the vomitting goes, it may be caused from numerous things, being dehydrated, or maybe the immodium they had been giving her to slow her stooling down a few weeks ago. Right now there is still many unknowns.

What would a day be like, not to have so much excitement? Nothing surprises me anymore. And I'm sure if you've been following Ally long enough, you feel the same way.

As we find out more, we will continue to update daily. Just as you think not much is happening with Ally, you now have all these updates to read! :)

There's never a dull moment with Ally!!! Trust me.

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Thu, Jul 7, 2005 7:15 PM
Earlier results from the upper GI tests show that everything is moving through the bowel. Its not 100% approved yet, but sounds if it will be OK.

The doctors are going to treat Ally for an infection for the next 7-10 days. We may be able to come home on Monday.

Transplant was just in and said they are planning to do the g-tube surgery, and bronch next Thursday. So if we can get a few days back home, it will be a little bit of a break from the hospital. They also said that after the surgery we may need to re-evaluate the process of feeding and some of her meds to determine what is causing Ally not to advanced in weight. We could be stressing her gut to much since Ally hasn't gained any weight in the last year. I guess we will see after surgery.

That's about all for now. Ally has had a busy day, not much sleep since she's had about eight x-rays keeping her from taking her afternoon nap. She should sleep well tonight.

We will update again soon.

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Wed, Jul 6, 2005 11:00 PM
Just like it would figure! Ally's scheduled surgery has been cancelled for tomorrow. Instead we will be having an upper GI test done to test for a possible bowel obstruction.

We tried a few days, even a week in advance to let the doctors here know that Ally has not been doing well, and that she has been vomiting a lot, but no one listened or seemed to care until today. There's seems to be lack of communication between folks in transplant. So now we must pay the price by being here that much longer.

Ally was fine most of the afternoon today, but as the night has been progressing she is continuing to decline. We have started her on some more fluids, stopped her feeds and are now preparing for tests tomorrow. The good news to take away from tonight is that her labs for her liver functions are better. Will take that.

Who knows what to expect now? I guess we will see by tomorrow what the next step is. My guess is that even if she does not have an obstruction, surgery for a g-tube will not take place until next week sometime. Jill says we are not leaving here until we get it! She means it too!

So back to the all to familiar routine of living at duPont. To be honest it feels as if we never left.

We will update again tomorrow after the tests.
Say an extra special prayer tonight or Thursday for her, she needs them more than ever.

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Mon, Jul 4, 2005 11:30 PM
The weekend did not start off very well for us. Friday night Jill and I had a few hours to ourselves to go and eat dinner alone, while Aunt Jeanne and Mandy baby sat Ally and Ashley. When we returned, it turned out that Ally's blood pressure was extremely low. It continued to go down, leaving us only one option...calling transplant. We thought for sure the weekend was going to be at duPont.

As we waited for transplant to call, Jill called our friends the Maichers (John, Sandy & Al) to see if John had a hydration bag to get Ally's fluid level back up. Sure enough they did, and I quickly made a speedy trip to Pottstown to meet Sandy and Al to get the bag of solution for Ally. Thanks to both of them for not only saving a trip to Delaware, but saving Ally, and our weekend!!

After running the fluid, Ally's blood pressure seemed to stabilize. Saturday came, and Ally was still not herself. The last week or so, Ally has been vomiting a lot, and I mean a lot!! This is what was causing her to be so dry. Anyway, we still were determined to make our first trip as a family to the mountains, to spend a night with family and friends.

Sunday we made the trip. It wasn't without a lot of vomiting, but we made it anyway. After getting there we all had a good time. Ally had her moments, but like the strong little girl she is, even after vomiting, she went right on playing, smiling and laughing.

Monday we spent most of the day packing and driving home. Both the girls had a good time on the trip.

This week is going to be very long. We are planning to call transplant tomorrow, to let them know about all of the vomitting, to see what we should do. Our guess, is we could be looking at making our trip to duPont a day earlier than expected.

Ally will have her g-tube, bronch, and liver biopsie all on Thursday. Most kids would only be in a few days, but we expect with Ally and all that is going on right now, at least a few weeks in the hospital. Hopefully in time to make our next trip for a few days to the shore.

We update again soon, enjoy the pictures!

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