Life as a Leach

Abby's surgery went well today.  Ortho removed the small section of the rod that had come loose (the length of my pinky) and plastics did another wash out and was able to close.  He did a special kind of extra suture to help take the pressure of the main incision, which sounded like a good idea to me!  I really like him and have been really impressed. She came back up to the PICU and it's been a crazy few hours.  Her blood pressure was very low and was making everyone rather nervous. They problem-solved and were able to eventually get it higher, although they did pull a dose of epi and have it at the bedside.  That was a little nerve wracking!  Thankfully, her hemoglobin is holding on after yesterday's transfusion.   Abby decided to show off a little more in the OR today, confirming that she would be keeping the breathing tube in tonight.  It was a little scary to hear about her antics, but she has been much better since being back in the PICU. ...

Abby just went back for surgery. She did really well going to sleep and was very calm.  The surgery should be about 3 hours.  There are a lot of unknowns, but this infection has got to go.  That's the #1 concern.

I spoke to the plastic surgeon this morning.   He spoke to Our orthopedic surgeon (who is already in surgery) and the plan is to remove all of the hardware, leave the wound open, attach a wound vac, and close later this week on Wednesday or Thursday.  They are concerned about her high white count and think the only thing that will get rid of this is to take out all of the hardware. :(. We will deal with the kyphosis later, but this is what needs to be done right now. Ortho has 5 cases today, so Abby will probably be last since she is an add-on.  One of the wonderful NPs came in to see us and cried when she heard the plan because she knows what a hard year this has been.  All this pain and suffering, only to have the hardware taken out.  I'm thankful she gets it. (She made me cry, of course!) Abby has gotten sick 3 times today and is feeling pretty miserable, so she's getting some anti-nausea meds and some pain meds to get her comfortable and hopefully make today...

Abby's incision is getting progressively worse.  We went to Plastics for a follow-up last Wednesday, and he changed some of how we do drsssing changes.  I emailed a picture Saturday night when we felt it was getting worse, and he increased the number of dressing changes each day and how they were done.  I have been SO diligent and careful.  Ridiculously careful!  Wound care is practically a sterile procedure in our house. Unfortunately, it kept getting worse.  I emailed more pictures tonight and the plastic surgeon wants to see her on Wednesday during clinic.  He is going to change her antibiotic and increase the duration (she was supposed to be done in a week).   Of course, we will pack.  We always pack when it's something like this.  Ugh.  

We got home last Thursday just 10 minutes before Caleb's show started!  We were all thrilled that we could be there to cheer him on.  He did awesome and I will post pictures soon.  In true fashion, we hit the ground running when we got home and haven't stopped since! Abby has enjoyed being home and is taking everything in stride as usual.  She's been doing lots of school work during the day to keep her skills up.  Her medicine schedule is finally starting to slow down a little as we are able to wean some of the respiratory meds. For a while there, it was crazy!  My alarms on my phone were going off constantly!  Now, we have it down to 6 a.m., 8 a.m., 12 p.m., 6 p.m., 7:30 p.m., and 12 a.m.  It's not great, but it's better than it was!  The reality of wearing the halo for 6-8 more weeks has set in with Abs.  She handles it amazingly well, but she does say rather matter of factly that she hates the halo.  I can't say I blame her...

Abby had a good day and is up and moving much more.  We went downstairs to play Doctor for a Day, to meet a therapy dog, and to play bingo!  She won a checkers game in bingo and had some impressive doctoring skills...she even used the Site Scrub to clean the baby's IV for the required 15 seconds! 😂 #medicalkid   As always, our nurses here have been great and we have gotten great care.  They did repeat labs a few hours ago and most everything is looking better.  Abby's halo has been adapted and is back on.  Much to my surprise and amazement, she didn't fuss or seem to care at all!  She has been perfectly fine with it on!     Abby is eating better, thanks to the Prednusone munchies, and she has really seemed to enjoy food again!  I'm hoping this is the end of the three week fast!   Funny story--I threw my hair in a pony tail this morning (who has time for hair and make up in the hospital?!). Abby pulled me in like she was going to gi...

I'm a little late in posting because we saw lots of doctors today!  She is quite popular!  (Not to mention that she's the star of the 4th floor with all of the nurse's doting on her!)  Abby was pretty lethargic and pale yesterday, with some continued respiratory issues.  I requested pulmonary come see her, and they got things rolling with neb treatments and steroids.  Blood work was also drawn. Hemoglobin was 8.0--a little low, but they are just watching it.   CRP (infection marker) was 3.2, up from 1.1. The infectious disease team doesn't like that the CRP is trending up instead of down.  They will draw more blood in around 48 hours to see if it is down.  The halo has been professionally cleaned in the same manner as surgical equipment, so it's officially disinfected!  The brace company is now making some adaptations to it, but it may take a few fittings to make it work.  This has never been done before, so it's trial and error. Her inc...

Abby had lots of desats last night, even with oxygen.  I'm going to get to the bottom of it and talk to the nurse practitioners today.   Her bandage was changed this morning and her back is pretty bruised, but they said it's ok.  She has lots of stitches.  Apparently, the plastics team loves stitches!  (And yes, just about ALL of this was open!) 😳   Her pain has been under control with meds and she has been in a pretty good mood.  She worked really hard at PT this morning and did 4 stairs.  Her neck is very weak, so we are concentrating on keeping her head up.  Her PT is pretty creative and fun, which definitely helps!  It sounds like she will go home with a picc and iv antibiotics, but I haven't heard that from the infectious disease team yet.  I'm waiting to see them.  If that's the case, the case manager will need to get rolling on nursing and equipment. Her picc dressing was changed last night.  It's supposed to be ch...

I went to the hotel with Caleb last night for some bonding time and a decent night's sleep. We enjoyed a movie and a game of Battleship.   Daddy and Abby had a sleepover without a lot of sleep.  Abby got sick in the middle of the night and Matt did laundry until about 3.  Poor guy!   When we came back this morning, Abby was all smiles!  She has been in a good mood this morning and worked hard with PT.  It definitely helped that our favorite CHOP PT Jo was here to play!!  She's the best!  Abby walked to the playroom and did some stepping up, sit-to-stands, and squats.  She is so tough!  Matt and Caleb just left, and now we are waiting for lunch after getting a bath.  Her hair is looking cleaner with every wash!!  :)  

Abby did really well last night and didn't require oxygen.  Her cough is much better now, so we are going to just do nebs if needed instead of every 4 hours.   We should be moving out of the PICU and onto our beloved surgical floor soon.  We love seeing all of our friends there! Thank you for all of your prayers.  Abby is doing so well and is as sassy as ever!  I have definitely seen some eye rolls this morning. :!

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 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...

Abby's PICC line is in and we are on our way home! I did the PICC training while she was getting it placed so that we wouldn't have to wait on that in order to leave.   Now that we have had more time to digest all of the information given to us yesterday, I wanted to share a little more about the actual surgery.  Dr. Cahill will be fusing 4 or 5 more vertebrae, this time going into her cervical spine.  She will have a total of 8 or 9 vertebrae fused now.  If this doesn't work, he will have to fuse her entire neck, which would cause her very limited neck rotation.  We are hoping this works!!! During the surgery, she will be placed in traction using a halo-like device on her skull.  This is to get her in the best position possible for the fusion and will be removed before she leaves the OR.     While she is in her halo in the coming months during her recovery, she won't be able to move her head or neck at all.  This will make walking challengin...

Today ended up being a lot more than we bargained for.  After getting to our hotel late last night, we took it easy this morning and got to the hospital for her 11:45 appointment.  After X-rays, we saw Dr. Cahill, who took one look at her back and was very concerned.  He had not been made aware of much of what we had been telling and sending the nurse practitioners.  There's a lot of blame that could be made, but that's not really productive right now.  At this point, I just want to make sure that doesn't happen again.  The important thing is fixing the problems from here on out. He's not sure what he will see when he gets in there.  If bacteria is covering the rod like he suspects, he may have to remove the rods until her body heals.  If that happens, she will be in the pinless halo for three months until she can have the big surgery to reinsert the rods.  Then she will be in the halo for another 3+ months after. If he can do the surgery now...

We head to CHOP tomorrow after school for pre-op appointments on Thursday and a PICC line placement on Friday.  Although they have in the past required that Abby be admitted after PICC placement, this time they said we could go home until her surgery on Monday.  Yay!!  We are thrilled to spend a few more days with Caleb and be able to attend our extended family party. The main event is next Monday, the 19th.  As always, Abby loves to see pictures of people wearing their purple!  It makes us smile while we are waiting for her during surgery too.  :)  Make sure you hashtag it #purpleforabby so that we can find the pictures easily!

A strongly worded email and many prayers from friends and family did the trick!  Dr. Cahill called me this afternoon to apologize for all of the miscommunication and trouble.  He offered us the 19th for surgery, which I eagerly took!  11 days...we can do 11 days. He talked with me at length about what the surgery would entail.  He is replacing the screws with hooks, and then fusing more vertebrae.  Sadly, that means more final height lost...but it needs to be done.  Basically, he is redoing the Shilla and we can expect that the recovery will be the same.  We are fully expecting that she will go to rehab again.  (Have I mentioned that we are still appealing the transport bill from her last trip to rehab?) It's going to be another tough surgery, but we have a plan.  She will be in another brace that is actually a pinless halo.  I'm sure she will love it even more than the last one.  :) We do appreciate your love and prayer...

I emailed the nurse practitioner last night to see if Abby's surgery could be moved up because of all of the issues.  She wrote back that there was no room in the schedule and she was actually going to have to be BUMPED until January 5th.  Dr. Cahill wants her to be his only case that day (last time, it took 9 1/2 hours to do this same surgery). There are 3 other cases on the 22nd, so Abby is being bumped.   I called the nurse practitioner after I calmed down and was able to speak calmly.  I voiced my concerns about waiting 2 MORE weeks when I was already worried about waiting 2 weeks!  I said if she popped 3 screws in one week, what would happen in another month?!?!?  She was going to talk to Dr. Cahill and see what she could do.  She was supposed to call me back today, but she didn't.   I've cried so much today.  I am so worried something is going to happen before she has the surgery.  I just don't feel right about waiting an...