Life as a Leach

Abby just went back.  Our surgeon is hopeful because he things the site looks good....so we are going with lucky #30!  🙏🏻 We aren't sure if she will go to the picu or the floor.  They have a bed reserved on both. 

We made it to our hotel at around 5 after having to call 4 different hotels before finding one that had a room. This is most definitely one of the hardest parts about not getting into the Ronald McDonald House.  They don't make it a simple process, that's for sure. But we are here, and the hotel is really nice and in an area with lots of restaurants.  We ate at a really good burger place (says the vegetarian!) with all natural, hormone-free foods and a great meat-free selection.   Our hotel is right across from Reading Terminal Market.  Abby doesn't have to be at the hospital until 11 tomorrow, so we plan to explore the market for a little while.  It's kind of fun to be in an area of Philly we haven't really visited before. As always, Abby loves to see all of the #purpleforabby pictures!  Tag me in it or post it to my wall so I can show her.  Thanks for all of your support!  We are seriously hoping that surgery #30 will be the LAST one for a while...

No skin graft today.  Her skin was only about 70% ready, and he wants it to be at 100%.  He cleaned out the wound today and put a special material on it to stimulate skin regeneration.  We will come back in 2 1/2-3 weeks for the skin graft and be here for another week or so then. At this point, she can go home when she is ready from a pulmonary standpoint. It's not the news we wanted, but we want the graft to work when he does it.  I haven't told Abby about the additional surgery yet.  I'm sure she will be thrilled.   I'm with her and she's as alert as she has ever been after surgery!  She looks great!

Abby went back at 10:15.  Surgery will be just a few hours, or shorter if he can't do the skin graft. 

I've lost count of how many times I've used the 🙄 emoji in my texts to family today.  It's just been that kind of day.   Things started out on a happy note.  We were told at 10 am that Abby would move to the Pulmonology floor today.  Yay!  Progress!  It all went downhill from there... At about the same time, I noticed a custodian dress in an isolation gown and mask to gather our trash. I checked for the sign on the door and found out that Abby's roommate had been put on precautions for a respiratory illness!!!!! 🙄  Even if you don't know a lot about medical things, you probably understand that putting a child with 15% lung capacity with a baby with a contagious illness is a BIG no-no.  I went straight to the charge nurse.  I was polite, but firm.  She "rushed" the baby's transfer to a different floor, which meant it took about 5 more hours. 🙄 I was a nervous wreck the entire time, impulsively wiping surfaces and using hand sanitizer. ...

Matt and Caleb drove up this morning, after hitting lots of beach traffic.  Abby was thrilled to see them!  She isn't allowed to leave her room because of the wound vac, but I have been reading to her a lot and we have been coloring.  Matt brought her wheelchair up and she sat in that for several hours, which is always better for her lungs and back than sitting in the bed. She has needed a fair amount of bipap during the day due to high respiratory rates consistently in the 70s and even in the 80s a few times.  Sadly, that may mean she will have to go to the pulmonary floor again instead of our beloved surgical floor.  Everyone on the pulm floor is super sweet!  Abby just missed all of her surg nurse friends.  The PICU doctor wanted Abby to stay there one more night before moving her, to monitor the bipap needs a bit more.  We will see what they say tomorrow. Otherwise, we are just hanging out until we get the results on Monday.  It's kind of...

Surgery today was pretty quick because our plastic surgeon was unable to find enough healthy tissue for a skin graft to work.  Instead he cleaned out the wound, took lots of cultures, and put a wound vac in. The skin graft will be done sometime at the end of next week.  It's amazing how quickly that wound got bad.   The culture very quickly showed something that hadn't been seen before, so that's an indicator of a more challenging infection.  We won't get the final results until Monday, but they put her on vancomycin to start killing whatever it may be.  It could very well be that these other bacteria were there the entire time, but they just weren't caught on that particular culture.  By our surgeon doing so many cultures, he had a much better chance of catching anything other than regular staph.  Looks like, he was right!  Because of all of this, her surgeon is going to do a longer course with the wound vac than he originally intended in order t...

We came to Philly last night for follow-up appointments today.  My dad came with me to help with Abby, and he suggested not checking out of RMH until after our appointments.  It was a good suggestion. The infectious disease appointment went well, but Plastics is concerned about Abby's wound.   He said the wound has opened and spread too much to close on its own and he needs to debride it tomorrow.  Since simply sewing up the wound isn't working, he plans to do a muscle flap and then a skin graft.  A wound vac will be placed afterwards.   He was going to admit her right then, but I asked if she could enjoy the evening at RMH before surgery tomorrow.  He understood and agreed.   She will be in the hospital for at least a week, and we will have to unfortunately cancel our vacation because she will be in no condition to go anywhere.  We got travel insurance for this very reason, but we had hoped we wouldn't need to use it. It's a rough day, but w...

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!!  :)  

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!!  

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...

What kind of physical therapist lets you shoot animals around the unit with Nerf darts?!?!  Our awesome Ms. Jo!  She always makes PT so fun. It was a very intentional game to get Abby to learn how to survey her environment with the halo on.  When she shot the animal, she had to feel it with her foot and kick it over to me--all quite challenging when you can't see it! It was lots of fun and she didn't even feel like she was working.   We also played Headbanz as a family today, which was fun.  Caleb's first question was, "Am I a mystical creature?" Which made us all laugh.  That's just so Caleb! Abby's wonderful teacher FaceTimed with her this evening, which brought smiles.  She is seriously the best!!   While we are hoping to transfer to rehab tomorrow, there are a lot of insurance hoops still to jump through because of the holiday.  It may not be until Wednesday.  Our insurance doesn't have a rehab benefit, but it has to be submitted and...

We had another good day today.  Abby is walking more--still needing a hand, but improving every time!  She was in a great mood today and loved having Caleb with her.  She pretty much wants him right by her side st all times! They each got to open a present this evening, as is our tradition.  Abby got some American girl Lego-type figures (they are AG brand) with accessories.  She was thrilled, of course!  Caleb got a Star Wars Death Star planetarium that projects either the Earth's solar system on the wall, or the Star Wars solar system!  He was pretty excited, but it requires a bit more set up than we can do here so he has to wait until they go home. Abby was also all about the crafts tonight!  She made a winter charm bracelet, a penguin, a jungle bell wreath, and a nativity scene (sent by American Heritage Girls!)   Tonight, we continued our tradition of listening to Paw Paw read "The Night Before Christmas" before bed by listening to his re...