Dislocated

This morning started out with Peyton preparing to go up to the PICU to have her endoscopy that the GI doctor wanted done.  {They sometimes do procedures up there.}  We went up a bit after 10am or so.  The doctor was ready, as was everyone else, but there were technical difficulties with the endoscopy equipment.  Technology is great, but sometimes....

The procedure finally got underway around 11:30 or so.  I waited in the family lounge waiting area just outside the PICU.  When it was over, the doctor came out to get me and we went back to Peyton's bed, which was diagonally across from where she'd been on Wednesday/Thursday last week.  She was also directly across from the non-stop lullaby.  {If you follow me on twitter or facebook, you may have seen me post on Thursday that I'd been listening to Brahms Lullaby for about 15 hours straight at one point.}  Wouldn't you know it, the lullaby was on a continuous loop again.  Joking aside, it sounds like that child {not sure how old - closer to baby age than Peyton's age I think is having a pretty major surgery in the morning, so if you could say a prayer for her, I'm sure the family would appreciate it.

The scope went well and there was nothing major discovered, which is good.  It does seem that perhaps the "j" tube may be a little large and she will need to have the whole g-j tube changed out for something a little smaller and less likely to cause this irritation.

While she was recovering from the sedation up in the PICU, one of the residents came by and he said the radiologist had read the xrays from yesterday and she noticed that one of her shoulders was "strikingly" dislocated and she wondered if we were aware.  I explained to him that yes, Peyton's shoulders dislocate ALL the time.  I explained how we rotate her arm and get it back in or she manages on her own somehow.  She's just that loose.  After we were back up in Peyton's room, ortho came down to take a look.  Sure enough, at that moment, both shoulders were dislocated.  The doctor manipulated her shoulder back into place using the usual method of traction/pulling/rotating.  By the time he left the room, I think he re-set her shoulders 4 times.  They popped out that quickly.  He wanted xray to come and get images to be sure they were still in place.  Xray came...but I told them I'm pretty sure I can tell you right now without xray that both shoulders were right then dislocated.  They just dislocate THAT easily.

Peyton has been wearing her bipap day and night since Saturday's apneic event (that's what they're calling her "stopped breathing" event).  There's a possibility that they'll try to wean her off of it a bit starting Monday.  Normally she only wears it at night when she's asleep.  Right now it's day/night regardless of whether she's asleep or awake.  I can't imagine wearing it while awake!  Since it gives a breath if she does not breathe, that's why she's having to wear it.

I honestly can't think of what else is going on right now.  We're still in the PICU.  Moira's been home for the past few days.  I haven't seen her since Friday.  It's been a bit difficult for her this time around.  We still don't have any answers for anything.

Will keep you posted.

Things Are OK

I realize {after a few people questioned me} that it has been a long, long time since there was an update here!  I just wanted to take a brief moment to update you.

In a nutshell, there's really nothing noteworthy to report.  After Peyton's hospitalization in March, she had some continuing issues with a couple little abscesses in the area.  I finally got one to burst and drain and it has greatly improved.

Peyton continues to have a lot of respiratory issues.  She was sick over Christmas and is still not quite herself yet.  Nothing worth going to the hospital over, but definitely worth calling the doctors a couple times.  She'll run a fever for a couple days...then nothing.  She'll be exceptionally junky and sound horrible for a while.  Well, she still sounds bad most of the time, but I think it's improved a little.

Overall, Peyton seems to be holding her own, although from an orthopedic point of view, I might say that she's losing some ground.  She is constantly dislocating her shoulders {particularly the right one} but also her knees and her jaw!!  It is becoming increasingly difficult to dress/undress Peyton because of her shoulder.  It seems like she is unable to do things that she was doing a few months ago, but I don't know...it's hard to say if that's permanent or just because she's been feeling so poorly since the holidays.

Schooling continues to be a "joy".  She's on homebound, which means the service providers come to her.  Well, they didn't do her IEP until the school year started, when it should have been in place for her to start on DAY 1 of the school year.  She started 6 WEEKS into the school year!!!  And even at that, she didn't have a special ed teacher!  They already cut her back from 4 days a week {an hour each day} last year to 2 days, but to have no one just isn't acceptable.  She finally got a teacher and then when Peyton went into the hospital in October, we lost her and we were supposed to have another.  Peyton took a couple weeks after she got home to recover, and in that time, the "new" teacher decided it wasn't for her, even though she never saw Peyton.  We are still without a special ed teacher.  I am thoroughly unimpressed with the school's ability to follower Peyton's IEP this year.  Disgusted is more like it, but I haven't said much simply because Peyton has had a hard time lately.  The school technically owes her all that missed time, although they would never acknowledge it unless we brought it up.  I did and was told we could meet to discuss that.  Well, no...THEY have been unable to provide a service.  THEY should be working on the solution and doing everything THEY can to make sure she doesn't fall behind {too late!}.  Ok, I could go on for a while about how unimpressed I am with her school this year but I won't.

As for nursing, we still get only 40 hours a week, which simply isn't enough.  However, the government seems to think any more hours would be unnecessary.  It's a struggle to determine the shifts.  I hate it, actually.  We have two nurses and this is the only job for both of them.  I want to make everyone happy.  It's so hard.   I struggle at times to put Peyton's needs first, so I tend to schedule more around the nurses which isn't right either.  It's just not easy to work with 40 hours.  I tried to go 3 days with no nurse a couple weeks ago so that I could make things work out better for one of our nurses {i.e. give her more hours on days she wanted} and it nearly did me in.  I am constantly exhausted.  That has never changed.  I can't seem to get past this exhaustion.  Anyway, I decided for myself that it isn't fair to me to do that.  Sigh.  The only way to get more hours is for Peyton to wind up sick enough to be hospitalized...but with something that would allow her to get more hours when she gets out.  And that would only last a couple weeks anyway.  We got bumped up to 56 hours after her October hospitalization for 2 weeks.  It was so helpful, even if it was still significantly less than the 80 hours we had been getting.  It's a full time 24/7 job {I hesitate to call it that since Peyton is my child}.  I can't go on forever like this!

Anyway, that's it in a nutshell.  I haven't been writing here, but I have been blogging...a LOT over at The Fontenot Four which is my personal blog.  It started like a "family" blog, but it's really just my space to write whatever I'm feeling inclined to write about.  Almost entirely positive stuff with no focus on the negative side of life.  If you haven't been to my blog, I encourage you to have a visit!