Blogging about life and raising our five 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!"

Friday, May 20, 2011

The end of a very long day

Just like today, this  update may be long, but it ends good. ;-)

I'm not really sure where "Yesterday" ended and "Today" started. I guess logically one would say midnight, but somehow it was all just one long day. Since we are really pushing fluids into Axel right now, our schedule completely revolves upon the next time he needs to get to the bathroom, and weather or not he needs to poop. Since getting him to the bathroom is back-breaking work, it's important to get him up and moving on his own as quickly as possible without pushing him too fast. It's a very fine line to dance! Needless to say, sleeping at the hospital isn't really conducive to parental rest when it takes three people to get him to the toilet, and it includes much screaming and yelling.

I wish I had a video of a bathroom run, but I can't do that and be one of the three people it takes to get him there. The halo is only supposed to be about 7 lbs, but since it throws off the center of balance, making the person top heavy, you're also supporting their entire upper body which is FORCING itself forward. So for Axel, that's about 25-30 lbs that we're struggling to move forward yet keep upright while not getting impaled with the pins or posts. Once we get to the bathroom

The next thing I know it was 8:00 in the morning and the surgeon (and his entourage) was with him. I was snoring on the roll-away bed. Lovely. Pretty sure I was drooling too. And you should see my hair when I wake up.

Dr. Samdani is very impressed with how quickly Axel is progressing, and I have to agree. Once that visit was done it was time to get Axel to the toilet...again...only this time he must have listened to what the Dr. said about how well he was doing, and he did GREAT walking to the bathroom. Still with 3 people, but with much less screaming and crying.

That done, we got Axel into his chair and went down to the front lobby to wait for Papa and Angela to come. I wish my battery hadn't died on my camera! I could have shared with you the first belly laugh we've seen since Monday.



Later in the day it was time for PT. Since kids are really top heavy when they get their halos on, they have to re-learn how to stand up straight, and the older the kid the longer this takes. The little kids do it pretty quickly, the big kids try to overcompensate, etc. Anyway, when PT Mark came the first time he brought with him a walker which helped, but Axel was still really pitched forward. Later in the day he brought a reverse walker. WOW! Axel stood right up, nice and tall! He walked the 10 feet to bathroom without any complaint. When we sat him up I was able to get a picture of his fusion incision. His hip incision is kind of underneath the vest and hard to see. (which makes keeping it clean really easy. NOT!)

Angela had spent the entire morning wheeling Axel's smaller wheelchair around and around the 5th floor, and Axel had been up a couple of times and stressed out by various things, so by that time it was 2:00 and everyone was tired. It was time for a family nap! Axel took the bed, Angela took his reclining wheelchair,  I took the roll-away, and Dean found a couch somewhere in an empty playroom. Angela wasn't really excited about taking a nap, but all I had to do was turn on the T.V., turn off the lights, and out she went! LOL We all slept for almost 2 hours!

One of the girls on the floor had a surprise birthday party yesterday. We all went down to have pizza and cake, but Axel was still sleeping so he missed out. But, the party was a pirate theme, and we brought him stuff! Last night Dean, Angela and I all slept at Ronald McDonald house, so this is how we left the pirate last night. LOL Terri, if you're reading, do you see the chain of fiddles you sent him? His favorite is the barrel of monkeys to shake!

Today I'll try to get a video of him walking. He'll be discharged somewhere between tomorrow and Monday. Since Dean and Angela are leaving Sunday, I have to be able to do transfers with him myself.

3 comments:

Difference2This1 said...

Sweet video...love how he puckered right up for that kiss. I can't imagine how hard all this is to watch, but it is special as an outsider to see how much Axel has melted into your family. Thank you for sharing that sweet moment.

Prayers for all of you as you work toward the trip home. Blessings, Jennifer

Becca said...

I thought that kiss was soooooo sweet. Wow. He's such an awesome little boy. Hoping all of the transitions with his new situation go well and that he acclimatizes quickly!

racheal_stewart said...

I love the pucker for Papa. So glad Axel is recovering well and the potty trips are getting a bit easier.