Monday, September 12, 2011

Post from the PICU

Still in the PICU... after arriving early this afternoon, I am happy to report that Will has not had any more vomiting since the x-ray earlier today. He has, however, been very lethargic. Around 5p tonight, he was a little alert and interactive with me. The PICU has a rule that no one but the patient is allowed in the bed, but I broke their rule and hung out with Will in his bed. He seemed happy, kind of sheepish, and responsive but a little delayed.

The moment didn't last long, and he went back to being asleep. The nurse comes in to do neurological tests every two hours. She checked him at 4p and 6p - sleeping both times. Of course it didn't work out that she saw him awake! When she would do the neuro test, she would try to wake Will up by first talking to him, then kind of tickling him, then touching him more roughly, and finally shining a flashlight in his eyes. Most of the time, he barely responded. Obviously this is bothersome.

Around 7p, Will was soundly asleep when Nate came to the hospital with Luke and Matt to take over for the night shift. We decided that since Will was sleeping and little kids aren't allowed in the PICU, we would have dinner together in the cafeteria. Nate and I got choked up several times when Luke would ask where Will was. We tried to explain that Will wasn't feeling well and that he was in the hospital to make sure everything was ok. He didn't like this answer. He told us that he wanted to see Will. Tried to explain that he couldn't. He got upset, and said that he wanted to play with Will, and check on him. And kiss him to make him feel better. Oh, my boy.

We were able to diffuse the situation eventually, and Nate went up to the PICU. I took Matt and Luke home - they were asleep in the car quickly. I was so tired on the drive home that I missed the exit for 540. We're all exhausted as you can well imagine.

I got everyone inside, dressed for bed, made lunches and am finally sitting down for a couple of minutes. Nate just sent these photos from the PICU - they have Will all set up for his video EEG. Will was awake for a while with Nate, but is back to sleep again. Unfortunately Nate just said that Will vomited while sleeping just a couple of minutes ago. This is all very odd, definitely not a cut and dry event, obvious path for us or Will's doctors.

Tomorrow they are planning to do the special tracer shunt test that I mentioned earlier today. That is the last diagnostic test to run before making some serious decisions on whether Will needs a shunt revision. Thanks for all the positive thoughts, prayers and messages coming our way. Please keep them up!

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