Life as a Leach

We are going over the Bay Bridge, heading home.  The brace company made a bunch of adjustments to the brace so that we could access her ear better. We were also able to put there a piece of the Duradry fabric we have for her chin, so we are hoping that will keep the brace from rubbing.   I was able to clean the area and it is definitely infected.  We are hoping that the brace changes will allow the infection to air out and heal. We still need to go to our appointment at the end of the month because he wants to get X-rays at the 3 month mark and see how things are looking.   It's a lot of driving for one day, but Matt doesn't mind and Abby has been fantastic in the car.  Another successful road trip to our Philly vacation home! 😉

Sadly, Abby has had a fever all day and is feeling lousy.  She has no other symptoms and has been completely homebound, so we are pretty certain it's from the infection.  After lots of phone calls back and forth to our pediatrician and CHOP, ortho and the orthotists want to see her tomorrow. They will take a good look at the infection without the halo as well as make adjustments to the brace to keep this from happening again.  We are not planning on staying, but we have been around the block enough times to know to pack a "just in case" bag.  Road trips are a lot more fun when the destination is vacation.

It hit Abby last night that she's really kinda done with the halo.  Getting the news that she had to wear it even longer than originally planned didn't help much either.  But, we are all making the best of it and hoping that she is able to swim this summer.  She will be in a hard cervical collar for several months after this, but I'm hoping she can at least sit on the step at the pool and cool off.  This also means she will most likely still be in a cervical collar for our summer vacation. :( We are also going to have to change her scheduled intensive outpatient therapy at KKI because she will still be in the halo.  I'm hoping to call them today or tomorrow to push it back a month. As much as I try to plan things...lol!

Abby had a follow-up today at CHOP.  They are very encouraged by her progress.  The X-rays may have shown some movement of one of the rods, but it may also be the angle of the X-ray.  He wants to follow-up with her in another 6 weeks and do repeat X-rays.  But to be safe, the halo is going to stay on for at least an additional month, which means it won't come off until the end of April at the earliest.    We hadn't gotten our hearts set on a date for this very reason, so it's fine.  We figured it would happen, which is why we are just saying it will come off in the spring.  I'm glad he is erring on the side of caution. The orthotist changed the chin and forehead pads, as well as her brace shirt.  Everything was SO nasty!!  And there were crumbs all in her shirt!        I was able to gently wipe her down while the brace was off, but it was very painful because her skin is so raw.  I see lots of lotion in her futur...

Abby did well last night breathing wise.  She is miserable in the brace and everything hurts.  The pain button got pushed a lot!  (We requested a pain pump this time, since they didn't give her one last time.  It is definitely helping!) They moved a new baby in last night on droplet contact precautions.  The family was hacking away and the baby had a high fever, respiratory issues, vomiting, and diarrhea.  They said the whole family had it!  That is all Abby needs!  Plus, everyone was walking through Abby's side after being over there in their isolation gowns touching stuff on Abby's side.  It was totally grossing me out.  I could almost see the germs floating through the air and sticking to things! Matt and I pitched a fit and they moved us to a different room.  I think they decided it wasn't worth the hassle!  That was around 11:30 pm.  I honestly don't understand why they would put Abby with a kid like that in the first...

Abby is out of surgery and in the PICU.  Her pain seems to be well managed and she is pretty calm.  She can't tolerate sitting up yet, but she wants to watch cartoons.  Matt is holding the iPad over her head for her!   The brace is connected to the halo in the front and the back by a bar.  The straps are pretty tight, so she really can't move her head at all.  Her throat is sore from the intubation, so she isn't talking.  We are communicating through sign language and yes/no cards for now! The surgery went well and he was able to switch out everything he needed to.  Several of the screws were loose and everything was close to the surface, so hopefully this will work better.   The nerve specialist monitoring her function did notice almost immediately that her nerve functioning had changed since the last surgery and was affecting her legs (as we have seen!). Unfortunately, that didn't improve after he moved the hardware.  This also explain...