Friday, October 31, 2008

0 for 8

Sorry for not posting yesterday, but it was a really busy day. Tyler woke up feeling significantly improved. His energy was up again, he barely used the morphine at all (1 pump all morning), and his voice was back. He was so relieved that the Ear, Nose, and Throat guys had taken a look at his airway and confirmed that he had a good clear breathing passage, although they saw lots of inflammation and lots of mucous clogging things up for his swallowing. The steroids they prescribed reduced the swelling in his throat and Tyler was finally anticipating swallowing real food again.

Since he awoke feeling so good, we allowed a few visitors to come in and say hi. He has to be careful still to not talk to much and to keep his mouth and throat moist, but all in all, it was a great day.

He was finally feeling good enough to get up and walk around the hallways, which is an important part of being inpatient. I even saw him practicing "the move" as he walked around the halls. I guess he doesn't want to lose his biggest weapon on the soccer field.

One of our goals for yesterday was to attempt swallowing again. The doctors tell us that thin liquids are actually harder to swallow than thick liquids, so they got us a jello cup to start with. Tyler was able to swallow the jello (8 times), but wasn't able to get the jello all of the way down. It ended up getting lodged in his throat halfway down and then coughed back up. It hurt quite a bit, so we called it good for day 1 of swallowing and plan to try again Friday.

When we met with the doctors, they told us that Tyler's transplant has been pushed back about a week with the delay in the repeated lumbar puncture. We estimate his new transplant date is 12/2. We expect to be at the hospital through Monday's LP, unless Tyler is swallowing nutrition and medicines again. He's been off his Tasigna for a few days, so we need to get him back to that medicine again soon.

Thank you all so much for encouragement while we were struggling earlier in the week. It helps us so much to have e-mails and comments from loved ones.

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