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!"

Tuesday, May 17, 2011

A Very Rough Day

The morning started out pretty good. Axel was "de-intensified" (had his arterial line, catheter, one of his IV's and oxygen cannula removed) and he was moved back down to a regular room.

About 3:00 he was complaining and pushing on his belly. They scanned him and found 400+ mls of urine in there (about double what his capacity should be.). He was wearing a pull-up, but you know...he's TEN and not gonna pee in it. We tried a urinal, and that got him making his noise he reserves for the most annoying situations. Although he wasn't due to start moving until tomorrow, we decided to try getting him to the toilet tonight. That took four people. Lots of crying and screaming because the hip where the graft was taken was very painful! Got him to the toilet but he just couldn't settle down. Finally we gave up, put him back to bed (more screaming) and used a catheter to empty his bladder, removing 475 mls of urine. Poor baby.

Two hours later he was distended again. We scanned him and he already measured 200+ mls. That's what happens when the kid is doing great with drinking! So we brought him to the bathroom again, and this time he WENT on his own, which was a huge accomplishment. But when we stood him up (four of us crammed into the TINY bathroom area!) his belly was still distended. We scanned him while he stood there and he was still at 200. UGH! We sat him back down and I sat in the bathroom with him balancing him for about 1/2 hr. Still nothing. We finally gave up. We'll try again in just a little bit but if he doesn't go, we'll have to cath him since his bladder is so distended, which makes his pain management difficult.

Moving him to the bathroom right now is a huge ordeal, and my back does not like it one bit. Once he gets his IV out it will require one less person, and once he understands that he has to stand up straight (and not KICK those helping him) it will be even easier. I'm sure Axel feels like me, that life would be great if he (and I) could just blink and these next few days would be over.

3 comments:

Amy L said...

Poor little guy....I'm praying that he feels better real soon! Bless him!

Mel said...

Awwww... Praying for things to get easier... hang in there Leah (and Axel too!)!!

Christina said...

Praying for you both Leah! Poor Axel! Praying his pain management is working! xo