Life as a Leach

We are with Abby in the PICU.  We didn't expect her to come up here, but the team decided that a night of close monitoring might be a good idea.  Nothing bad happened during the surgery, so we expect she will probably be sent to the floor tomorrow.   She is in rare form with lots of funny anesthesia ridiculousness and yelling that we are all liars (including the doctors) because she didn't think her nasal cannula was in all of the way.  It was pretty comical!  She is starting to settle down a little now, thank goodness.  Her pain is pretty well managed with 2 IV meds and a pain pump.  Infectious disease is following her closely to make sure the infection is getting better. Tonight will be spent keeping her calm and comfy.  Thank you so much for all of your prayers today!!  

We just saw our surgeon.  Everything went the way he wanted.  There wasn't really a lot of infection, and the left side was ok, so he didn't need to remove it.  He removed the right side, but left the bottom part of the right side that was unaffected. The Plastics team did a muscle flap over the area, which is involved and she will have drains for it. But, he doesn't need to go back in again, so that is good. Overall, good news.  We are still waiting for her to get out of the OR right now before we can see her.

Abby is still in surgery.  We haven't gotten much in the way of updates, but Dr. Cahill is done his part.  We are waiting to hear from him.

Abby just went back.  She did well going to sleep and liked having her new puppy from Child Life with her. Surgery is scheduled for 3 hours or so, depending on what they find when they get in. 

Thank you all for your overwhelming prayers and support.  We are thankful for the love you are pouring out to our family.  This has been a really tough day and I certainly am struggling with blaming myself for missing this.   Abby's surgery will be tomorrow, although we aren't sure what time since she is last minute.  Dr. Cahill will remove the right rod with the hope that the left side can stay in.  If there is any bacteria on the left side, he will remove that as well.  He is very aware of what that could do for her kyphosis and doesn't have the answers for that right now.  Surgical options don't seem to be working for her.   Although a lot will depend on what he sees when he gets in there, he is expecting that it may take several different surgeries in order to close the wound completely.  This would mean Abby will be here for a while.  Abby is still coughing a ton and has a fever when she is without Tylenol.  They have her on Al...

This is a really difficult post to write.  We brought Abby to the CHOP ER this morning because she just didn't seem to be getting better from the pneumonia.  Knowing that the halo complicates things and other hospitals wouldn't touch her, we decided to just come here.  After checking out the X-rays, they determined it wasn't pneumonia.  Well then, what is it?   There was a lot of necessary coordination needed in order to remove the halo.  When they did, we found that about 3 inches of her rod is exposed and her back is very infected.  We had no way of knowing because the halo covered everything, but it is killing me that I didn't catch it.  Killing me. She will have surgery tomorrow to remove the affected hardware and clean out the infection.  We won't know how much of the hardware has to be removed until he is in there and sees it.  The halo days are over because of the infection and wound, which is not a good thing. We are still in sho...

Our pediatrician called today with Abby's blood work and one of her numbers was pretty off.  It's a marker for infection, but could also just reinforce the pneumonia diagnosis. We are going to CHOP tomorrow, so they can check her back carefully to look for signs of infection.   Unfortunately, Abby still has a fever, her ear is also still hurting, she has a horrible cough, and the culture isn't looking great. Dr. S isn't quite sure what CHOP will want to do, but he told us to pack a bag.  Right now, her oxygen levels look good and she is resting comfortably, so I'm ok with keeping her at home.  We are praying that she stays that way!