Tuesday, August 7, 2012

Tuesday Update...

It's Tuesday early evening, and I haven't updated since surgery on Saturday.  I am always amazed at how there is a warp time in the hospital.  One day turns into four in the blink of an eye.  That's also about as much sleep as we get, one blink in four days.

This the fourth surgery on Max's bowels since December 2010.  That's a lot of opening and closing of his little belly!  With those surgeries, and recovery times in our recent past, we're able to navigate this hospital stay a little differently.

That's not to say we are just kicking back and relaxing by any means.  In fact, the reason I think we haven't updated so far, is because we are constantly trying to get him the things he needs.

Max has been having fevers, and seems to be in more pain post surgery this time than he has the previous three times.  They had to cut into a new area, and the incision looks good...so say the surgeons.  It looks awful to me...but then, I can't see a bloody nose without feeling like I'm going to fall down.

We have really been proactive this time to try to get all our ducks in a row to try to avoid a multiple week stay.  Max's regular surgeon said this morning, "I don't know why Max always gets fevers like this after every surgery.".  We don't either, but that's one thing he seems to keep consistent about.

Before we signed the waiver for surgery on Friday night, we laid out the things that needed to happen post-surgery.  Max had to go into the PICU straight away post-surgery.  We've tried putting him on the floor before after these surgeries, and he ends up in the PICU because he needs to much attention, so we thought it would be best to just start there.  Max always gets stellar care in both places, it's just the nurses in the PICU are one on one with each patient, where on the floor they have a few patients to split their time with.

We also knew that once he was finished with his time in the PICU, he needed to come to the floor that supports him most.  The surgery team follows their kids on the 6th floor.  But, Max is way too involved, and while surgeons are brilliant at being surgeons, they are not metabolic specialists, or epileptologists.  So, we got on a team that usually follows him, on the floor that usually takes care of him, with nurses who are familiar with him.

The biggest thing that was keeping him in the PICU was the fevers, he's been having them daily since surgery, but we are seeing him be more comfortable with pain management, so he was moved up to the floor this afternoon.

It's so quiet in here now that I had to turn Max's music up to try to hush some of the clanging outside of his room.  The PICU is constantly beeping and buzzing and humming with some noise, so it's nice to have a little quiet.

We will hang out here until Max tells us he's all better.  I am guessing at the very earliest that will be next week sometime.  He's got a lot of goals to meet until we get the boot out of Camp Children's.  I just hope we get out of here before school starts!

You can follow along with more updates, photos and videos on Max's Facebook Page.


Danetta said...

It's good to hear that he is feeling well enough to go to the floor. I am guessing that means he met his goal for the day. Continuing to pray for a quick recovery and rest for all of you. Love you much!

Deana said...

Nope...still waiting for a poo.