11/1/2011

We keep getting hit with new issues left and right with Liam's health. Yesterday he had blisters on his face. It turned out to be contact dermititus. They put some cream on it and it was almost gone by morning. Yesterday we had to lower his feeds from 24ml's per hour to 16ml's per hour because he wasn't tolerating the feeds. His heart rate and respitory rate were too high all night long the night before. We had put him back on oxygen that night and it didn't take care of the problem so yesterday morning we lowered the feeds and within hours his heart rate and respitory rate went back to normal. We started mylacon drops and tylanol to help with gas and pain. This morning the specialist came in and gave us more news. They said the radiologist looked at Liam's xray and it appears his left lung (repair side) was stretched out during his repair surgery. Thats not good. It's also the reason his left lung appears twice the size of his right lung when his left lung was his underdeveloped lung. I had asked that question many times since seeing his xrays here at Childrens. Now theyre trying to get ahold of Liam's xrays and CT from USCSF so they don't have to do another one. Theyre hoping the CT and xrays will help explain why and how this happened. Just when I think things are looking up, things go down hill. I'm really struggling with this whole situation. I know God only chooses strong parents for these babies, but the blow is still harsh. They say the first year is full of hard times. Struggles and hospital stays. Then after the first year things are supposed to be more "normal". We're only 3 1/2 months into this. If I'm struggling this much, I can only imagine how Liam feels. It's so hard being here at a hospital 24-7. So very depressing. I won't leave Liam alone for more than I absolutely have too. I feel like I have to be here with him. Going home for a day or two just isn't an option in my book. Home feels so empty without him there. It's hard having two kids when one is in the hospital. It's harder to choose who to be with knowing that the other one will be alone. I know Lanie is not alone but I know she needs me. She doesn't get near enough of my attention as she deserves. No matter what I do it feels like I can't win for trying. ......
The pulmanologist came in and she basically wanted to know if we planned to follow up with them or UCSF. I told her if we could follow up with them we will. She said ok because they were having issues with UCSF wanting to release Liam's medical records even though I signed the paperwork so she wanted to order a CT scan but refuse to do so if were just going to be following up with UCSF. Waiting for her to come back now to let me know. She wanted to know what the plan was for Liams high right side so I told her the plan was it had to be repaired. I also told her that Dr Jones said she could repaire it here at Children's. so our plan was to do it here. I just pray we can start having good news soon.