Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, May 18, 2011

Sitting Up

Today was a day of changes for Axel. First, our surgeon Dr. Amer Samdani came in to see how Axel was doing. Because we started getting Axel up to pee yesterday afternoon (since he refused to have anything to do with the urinal) that put him slightly ahead of schedule in the recovery process. We'll just have to see if he stays ahead or ends up discharging at about the same time as the other kids.

As you read the rest of this post, know that every.single.step involved much screaming and crying. Some related to pain, and some just about the fact he now gets mad as soon as anyone walks into the room and he anticipates being messed with. He's still living up to the "spider monkey" nickname! Man, can he reach around behind him when you *think* you're holding his arm!!!

So, the first thing we did was remove the bandages on the main surgical site on the back of his neck. The incision is about 4 1/2 inches long, and sure looks sore. OUCH!

Next was to remove the drain from his hip where the bone graft was taken from. This was probably the worst thing of the day. Adults who've had this procedure done say that hip feels like it's been cracked in half. Between the fact they have to move and REmove muscle from the bone in order to get to it, plus they cut a hunk out of it, I can only imagine the pain! Then there is the nerve pain on the skin near the incision. Oh, and pulling the stitch that holds the drain in place. (Renee, the internal portion of Axel's drain was only about 3-4 inches long.)

After that was all removed, a lidacaine patch was placed over the top. This stayed on for 12 hours, then is removed for 12 but maintains it's effect. Another will be applied tomorrow morning. The purpose of the patch is more localized pain relief, allowing him a *slightly* easier time walking.

Next came pin care. Lovely. Cleaning the pins. They're not supposed to hurt, but there is definetly pressure. Axel's crying was much more pissed off than anything else during this fun stuff. Oh, and it was two nurses-in-training learning to do this so they got a lesson in "turning off" your emotions when doing difficult stuff like that.

We also ditched the oxygen he's been getting when he sleeps, and disconnected his I.V. narcotics, switching him to oral morphine instead.

So that was all done by about 10:00 this morning, and with all that screaming and crying he was ready for a NAP. So was I. :-)

At 1:00 PT came in. I can tell you that Axel does NOT like Mark, because Mark makes him do stuff. Like stand on an incredibly sore hip. But today was better than yesterday, and with three people holding him we were able to get him to the toilet to pee. (last night we were just using the camode by the bedside.) One discovery I made: My back is a MESS! Yesterday, the first time we moved him, I realized my back cannot handle bending over him, supporting him. That and in the airport in Minneapolis I managed to do something to my repaired wrist, and it's still not back to normal. So we've been trying to have staff do all the lifting, but I'm a control freak and sometimes it's just easier to do things myself than try to explain it to someone. I know this is bad, and I'm trying to just give it up so that my back is in good shape for when he is discharged and I'm on my own.

After the field trip to the toilet, Mark brought a special treat: A wheelchair! Axel was able to see this place he's spent the past several days, and even got to go to the giant playroom with Dean and Angela.
He stayed in the chair for about 2 hours, dozing off and on before we brought him back to his room for a much needed nap. Just like getting into the chair, getting out includes the same screaming and crying. Oh, and when he's standing and having to "walk" (because it is so not a "walk" at this point.) even though that hip is killing him he's able to stomp that foot in anger! I think I've mentioned his foot stomp before. It usually annoys me, but in this circumstance it kind of cracks me up because we can see his spunk coming back.

Axel did get one surprise tonight. Dean, Angela and I went back to Ronald McDonald house for a few hours so I could get a good nap (slept like a ROCK for two hours!) and dinner, haircut for Dean from a visiting salon, etc. When we came back to the hospital at 7:30 Axel had eaten dinner and was back in his wheelchair, sitting at the nurses station. But he didn't look very happy and wasn't smiling. I went to the room and took out something I'd been saving for a moment just like this. When he needs a favorite something from home.

You know those Signing Time videos? Axel not only watches them obsessively, but he LOVES the little booklets that come inside each dvd case! He has collected them, and at home keeps them all in a nice neat stack which he carries around the house with him. He ADORES these things! So, when I brought them out from behind my back his face lit up for the first time since Monday. OH HE WAS SO HAPPY!!!!!! He kissed the picture of Rachel, made the nurses look at the booklets, etc. He fell asleep tonight holding them. I don't know what we're going to do if these things ever fall apart.

Here's a picture of Axel having a very awake moment in the chair. I had just given him his Signing Time booklets. He was sound asleep again a few minutes later.

Tomorrow proves to be another big day. He'll be getting his vest and halo adjusted so it's straight. They have to wait to do it when he's able to stand up straight, bearing equal wait on both hips. For those who asked, no he cannot bathe with the halo & vest on. The vest does NOT come off except in extreme choking....The purpose of the halo/vest is to keep the bone graft 100% still so it can graft together and heal, and the halo is held in place by the vest, which is fitted to the body.


Mel said...

Leah, he looks awesome!!! I'm so sorry that he is so uncomfortable though. :( Poor lil guy!! Take it easy, and while you have help, USE IT!! Thinking of you all and praying for peace and healing!! Hugs!!

Nance said...

Hey Leah! We are thinking and praying for all of you! What a trooper that Mr. Axel is!!