August 4, 2009

Today was a strange day. It didn’t exactly go as I had hoped and now Shannon and I feel scared. This morning his chest x-ray was still not looking great. His left lung is still collapsed and his right lung didn’t look that great. The pulmonary team came in and told us that they were recommending that Gabe get a CT as soon as possible. The biopsy of his liver is now taking a back seat. They had previously said that they didn’t see any structural issues during the bronch that they could see. However, that only went so far into his lungs. They want to do a CT to make sure Gabe doesn’t have any other lung disorders that we may have overlooked. They also mentioned that they may need to do another bronch after the CT. Then they discussed the possibility that they may want to also want to do a lung biopsy as well! The doctor mentioned that she wanted to see if they could get the two different surgical teams in the same operating room to perform one procedure after another so that Gabe wouldn’t have to go through it two separate times. To me that sounds like a lot for a kid who is just having trouble keeping his lungs open at this time.
The next scare for me came when they started tossing around the term chylothorax (probably spelled that wrong). Basically this is a condition in which fluid from his lymphatic system leaks into his lungs. They have been apparently finding lymphatic fluid in his chest tube drainage. Then I found out that they had tested for it and I had no idea. This made me a little frustrated to say the least. Apparently it is debatable whether or not he has this condition. I won’t get into that. What I can tell you is that for it to be considered a chylothorax, the percentage of lymphocytes out of the chest tube must be greater than 60% and Gabe is at 97%. Also the percentage of protein in that must be about 1.6 or something and he is at 3.7. We flat out asked if he has this or not and they still will not say. I won’t get into the whole entire thing, but I will tell you that basically everything he is dealing with is all tied together somehow. However, we don’t know what started what. It’s kind of like what came first, the chicken or the egg?
Then the day nurse gave me a little three page information packet about what hydrops is and everything about it. This was just the topper that sent me into worry. It wasn’t exactly fun to read and left me feeling very scared and depressed about what little Gabe is up against. Shannon and I will be very strong, but sometimes it catches up with us and we have our moments. But then we pick ourselves up and start the next day getting to see our beautiful little man.
As I left the NICU tonight Gabe was resting comfortably being taken care of his wonderful nurse “L”. His eyes were open and he was watching me as I talked to him. I even got to change a poopie diaper, which was my first one. I guess you can say this is good news, since they were worried that things were not moving through him. But he is related to me, so they should start really moving. The poor little guy has another IV in his coconut which always makes me feel bad. They have also been unable to start another ART (arterial) line in him which he desperately needs. They have been trying for almost two days now and when I left they were going to be trying again. I hope they have more success tonight.
Tomorrow is another day. Please continue to keep little Gabe in your thoughts and prayers.
GO GABE GO!!!