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!

Abby has had a lingering fever off and on for a week.  She only went to school for a day and a half last week, but then was fine over the weekend.  I sent her yesterday thinking that the germs were behind us (after using 2 cans of Lysol spray and a jar of wipes on our house!), only to get a call from the nurse saying Abby had a fever of 102.7.  Ugh. I took her to walk-in sick visits yesterday and was thrilled that our regular, amazing pediatrician would be the one seeing her.  (They are all wonderful--Dr, S. has just been our go-to for the last 6 years!)  He did a flu and strep test, which came back negative....leading us toward wondering if it was her incision.  Ugh. He ordered a chest xray and blood work to check for pneumonia and infection markers.  We got those done this morning.  The blood work won't be back until tomorrow, but he just called with the xray results...pneumonia.  The halo makes it difficult to see the lungs clearly, bu...

Our whole family has had crud of varying kinds this last week.  Now it's my turn, except that moms can't get sick! Chloe has been keeping me company, and Matt has been great about taking care of the kids!   I am feeling a lot better and am just waiting to be fever-free for 24 hours before I get close to the kids again.  So we prayed and sang like this tonight before bed!   I would LOVE to have a snow day tomorrow, but my chances seem to be slipping through my fingertips. :(

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.