Life as a Leach

If you've been following me for a while, you have heard me talk about the "Hurry Up and Wait" method that hospitals love to use to torture families.  You know, the whole idea where the doctors make something seem so urgent that it needs to be taken care of right away... and then ...you wait. Case in point:  Abby's back looks really different now.  There's a piece of the rod sticking up that is very visible under the skin.  She had a bad fall on Thursday, so I decided to contact CHOP to let them know that things weren't looking right and that she had increased pain.  After sending pictures of Abby's back on Tuesday, the nurse practitioner urged me to go get xrays right away.  By the time I talked to her, it was too late to go to Hopkins that day because xray would have been closed.  I took Abby there on Wednesday, got the disc, and contacted CHOP right away to let them know that the xrays were up in the system. Meanwhile, yesterday evening I shared ...

Yesterday was quite a whirlwind!  We left the house at 6:30 am and got to CHOP around 10:45.  Abby got Xrays and then we saw the team.  Basically, what has happened is an unforeseen complication where the hump that was supposed to be corrected by the long rods has been pushed further up the neck. (Kind of like pushing down a bubble on wallpaper, only for it to pop up somewhere else).  We are playing whac-a-mole.  Yay. Dr. Campbell is going to do something, but her "unique" anatomy makes it a challenge.  She got a ct scan today to give him more information.  He has an interdisciplinary conference next Friday and is going to discuss with the team to see if they have ideas.  In his words, "all of these kids are special and I've never seen the same problem twice."  So he has to figure out what he is going to add to fix the problem.  We know that there will be additional hardware added soon, but we will know more next week.  We are hopin...

This was just supposed to be a jaw surgery.  Abby would be intubated for 5 days to let the swelling go down, she would wake up, we would deal with pain, and then everything would be fine.  We would go home with our little girl and her fancy new jaw. PLOT TWIST!   Abby's neurological concerns are still there.  We have worked with OT and PT, as well as consulted with many doctors, and they all feel that inpatient rehab at Kennedy Krieger  is the best placement for her.  Our insurance company has already been trying to say she could get therapy at home, so the doctors are prepared to fight.  All my local friends know that there's nothing comparable to kki anywhere near us!  Neuro came in to do another exam this morning.  While we are seeing some improvements with the spaciness, she is still having a lot of trouble with her arms and trunk control.  She is also still drooling uncontrollably.  Plastics kept telling us it was from the surg...