Day +19

Well today started off good. Henry's bilirubin dropped to 4, as long as it continues to drop the Doctor will be alright, otherwise I think he's considering treating it as VOD. I have to let you know we just switched Doctors today as well. Most of the Doc's are trying a two week round, some still do the 31 days. It's so hard to transition to a new Doctor in the middle of everything. They don't know Henry, except for what is written down or what the other Doctors say, but they haven't really experienced Henry, and with out that you can't really know how to treat him. I'm trying to be patient and allow the Doc to do his job, and perhaps he'll have some good insight the previous Doctor did not. The pathology report on his liver biopsy hasn't come back yet, might take a few more days. He plays for a few minutes every now and then, and I worry constantly about his loss of strength and muscle, just laying in the bed all day. So I try to get him out of the bed for small bits of the day, but most days he's too uncomfortable. Those of you with young ones, measure the size of their belly in cm...now extend the measuring tape to 63cm...and that's how big Henry's little tummy is just to give you an idea.
So this evening Henry was interested in his toys and was a bit more alert. So we played with his 'Pooh & Tigger' balloon that has helium in it. He was laughing and smiling and having a great time. It was so good to see. We try to keep him active and playful like that as long as we can. However tonight he started having a bad coughing fit and was dry heaving.. and unfortunately it was so violent that his NG tube, that usually goes into his nose, came out. Well actually it was a good thing. The IR doc's that put his NG tube in during surgery put it too far in; it was coiled up in his stomach. They had it in at 53cm or something and it's only 32cm to his stomach. So it may have been causing more irritation to his stomach. The nurse was checking placement, which involves using an empty syringe to draw out the contents of the stomach to make sure you're in the stomach. Anyways she got a ton of mucus to come up, which means it was definitely in the right place and it explains why the poor little guy is puking so much mucus. Ugh. So at the end of his fun we had to replace the tube which was not a happy occasion! He is getting too strong, he can shove my hands out of the way a lot easier. I guess he can't be losing that much strength!! We're so hopeful that his graft will start to grow and that his liver will calm down and be fine. One bad choice can cause major complications so I'm a bit nervous to say the least! Sorry all the posts are at 1am! Henry has odd sleep hours, not that it matters when you are in patient.
Oh yeah and Happy Birthday to my baby girl, Elizabeth!!!! She turned 3 today! She called me and told me on the phone that she was "a country girl." Twang and all. Sooo cute! She was asking my mom what Grandpa's name was, so my mom said "Larry" well I guess Elizabeth started laughing and said "Larry?!" And kept laughing. She seems to be doing alright, keeping busy and having fun being a country girl. Can't wait for her to get back. Miss her so much.