Max got moved up to the rehab floor last night, after almost a week in the PICU.
Surgically, he has healed up wonderfully. But, as it goes with Max, he's had bumps in the road with a few seizures, a case of thrush from the antibiotics, prolonged fevers, and high heart rate. All those things kept us in the PICU.
As his need to be watched constantly changed, so did the nurses he was placed with. We laughed last night when he had his second pregnant...very pregnant...nurse working with him. Definitely no lifting has been going on. Which just means we have to make extra sure to be with him all the time.
We have just a few more hurdles to jump to get home. Getting him off of the IV medicines, and onto his home regimen. Getting him weaned down off of his seizure medicine that they doubled up on for seizure coverage while he couldn't take anything in his stomach. And convince the doctors that he will most definitely get more attention and care at home when we can be in charge of when he gets his medicine, and when he sleeps!
His surgeon yesterday said, first of the week as a going home date. One of Max's metabolic doctors stopped in to check on him before she left for the weekend. He was bright eyed and smiling at her...something he seems to only reserve for her when he's sick. He mustered up his voice and started talking very intently to her. Looking straight at her and saying, "aw uuh...oh ohhhhoooo". Which in Max talk means, "all done, go home!". Once Steve and I understood that's what he was telling her, we relayed his message. She had to apologize and let him know it wasn't her decision this time.
He stopped the smiles and went back to sleep.
Now that we're back on the floor, we're hoping to get him a bath today. He's only had wipe down bed baths since getting here last week because of the incision site. But now that it's a week out, he can have a proper bath...and boy does he need it!
So, that's where we are. On the downhill roll towards home. And then hopefully our summer can actually start in earnest and Max can get back to riding that bicycle!
dear, you have NO idea how much the picture of a boy and his dad staring intensely at each other does to me. it just melts my heart. miss you all.
so glad things are improving. Can't wait to hear that you are home. big hugs.
Just here and have been since finding out. Holding you in my heart. Thinking about everyone. :)
Rock on little man! Way to go!!!
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