Sunday, August 19, 2012

Third Weekend...

I've counted it up and I think I've got it right that this is Max's 8th major surgery.  And although it seems like we've been here forever, it's still not the longest amount of time we've spent in the hospital with Max.

Today we are ending day 17 in the hospital.

He was moved up to the 8th floor from the PICU late Saturday afternoon.   We have a good plan in place for ramping up his feeds, using the J part of the GJ tube.  He's tolerated his feeds, and even his medicine in his GJ Tube well.

Now that we're starting to give him medicine in his stomach/intestines again, it will be a process to get him off of the IV medicine so he can go home.

Home...who knows, really, when that will be.  As the next couple of days come along, we will get a better idea.  But as of right now, if we follow exactly the way it's written out for Max to wean off of the IV medicines here at the hospital onto his home medicines, that would mean another 15 days in the hospital.

None of his doctors will want that, so it may mean going home on some IV medicine given through the PICC line, and then have the PICC line taken out once he's back to his home regimen.  But, again...we'll see what all the doctors say in the next couple of days.

Max has been feeling a lot better.  When he's awake from the anti-nausea medicines that make him so sleepy, he's happy and interactive.  The more he wakes up, the harder it is going to be to keep him in a bed, when he'll just want to be kicking around and playing!

Today, while the nurses were changing out his bed from a regular hospital bed to an air bed to prevent pressure sores (since he's been laying so long), we got him in his chair and went for a walk around the hospital and outside.

Max thought he was really pulling one over on everyone as we got into the elevator...
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Quick...let's make a run for it!
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He's still pretty weak from laying for the past 17 days, but he wanted to touch the tall grass, and be in the sunshine.
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He stuck his feet out to touch the hairy grass every time we passed some.
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(Those are Heelbo Padded socks on his feet to protect his ankles from his wild kicks, and pressure sores from laying so much.)

And his batman shorts made an appearance!  He's all about batman right now...how age appropriate!
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He was starting to slump a little, and a couple of his pumps were going off, so we headed back in after just about 20 minutes outside.
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He slept while Aunty Angie, Uncle Dan, and Cousin Addie came up for a visit.  But woke up for the sun to set.  As soon as the sun went behind the mountains, he went to sleep again.
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That 20 minute walk wiped him out!  We'll have to work him up to being outside more!  And hopefully we can get him up in his chair more tomorrow.  It's not exactly an easy task with all the wires and cords he's got attached to him right now.

Here's hoping to a quiet night, and lots of rest for us all.   Abbey and Steve are at home, since Abbey starts HIGH SCHOOL tomorrow!  Now the real shuffling begins.  We really really are ready to get home!


1 comment:

Elizabeth said...

It was wonderful to see him in the sunshine -- I'm glad for all of you. I just can't imagine how weary you are and hope that rest comes ALL your ways very, very soon!