A better time, but a rough time

We've been moved to Complex Airway, out of the PICU, which is great! But poor, sweet Ike is having a tough time coming off the smack. Right now is the first time he's been asleep for longer than a few minutes in over 36 hours. It appears that while the Ativan helps tremendously with the shakes and his mood, it also makes him crazy manic hyperpants. He only gets it every six hours, but the crazy manic hyperpants lasts pretty much all the time. At least during the first few hours he's happy. Sometimes.

Today has been especially hard because he's obviously not happy and frustrated. He wants to be walking and playing, but feels terrible and can't get his legs to work. He had just a minute or two of walking behind a push toy while I held on to him and he was thrilled, but then his legs buckled and it was back to sitting or laying – not his idea of fun. Everyone says it's a matter of time


I had to stop writing then because he woke up after only 20 minutes. That was 4 hours ago.

We just put a trach mist collar on him, hoping that will help. More familiar. Now his scar is getting nice and misty.

My husband and I have been trading nights at the hospital, so at least one of us gets some sleep. Now if only Ike would get some sleep, too.

6 thoughts on “A better time, but a rough time

  1. What a good idea about the mist collar! Thanks for the updates; your family is on my mind and I really hope everyone gets some restful and healing sleep.


  2. Poor kidlet – but this is not, fundamentally, something that’s wrong with Ike himself, just a leftover! That is such a huge step forward. Hang in there, all of you.


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