Sorry for the lack of posting yesterday -- I was just so tired. Yesterday was a very difficult day for me, I think it was probably because things just started to sink in. Gavin was very restless and uncomfortable all morning and would not even tolerate being held, which of course broke my heart.
On the infection front, we were certainly loosing. The cultures from two days ago began to grow a secondary infection, which often happens because when Gavin gets sick he tends to just get sicker and weaker and unable to fight anything off. The even worse news is that it grew fungus, which is our number one enemy and the even worser news, if that's even a word, is that he also grew out a fairly common bug, but one that has become so resistant that we are now on isolation.
With that said, the line is now out so we just need to pray very hard that the nasty bugs didn't make there way to any other part of his body. It's so hard to tell just how he is doing. He's not really mounting a response to these infections beside being in pain. He has not had a fever the entire time we have been inpatient -- but is obviously very sick.
Yesterday we also had another carnival of infusions, with Gavin receiving blood, albumin and IVIG. I asked that he only be given a small amount, due to the fact that he is so swollen and his belly will only hurt more after the blood gets trapped in his liver and spleen. I guess we will see what his counts do today.
Today will just be another day of managing his comfort. He is now on a high enough dose on the Morphine pump to be switched over to the fentanyl patch. I'm not sure if this is the plan or not. We also have been looking into lots of different hospice options. I was referred to a place that sounded like a prefect fit for our family with lots of creative therapies but later found out that we live out of their treatment area. All the other places just don't fit us -- even their web pages make me feel like I'm in a nursing home -- that's not our life. We are a young family - active and still full of so much life despite Gavin's illness. I'm praying we will find some type of program.
Thanks for all your continued prayers and support. In case you are wondering due to the rain I think our move in date to Gavin's House will be delayed -- I guess someone doesn't want to do electrical work out in the rain.
What's wrong with that?