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.