Life as a Leach

For those that are not friends with me on Facebook, our visit to CHOP yesterday included cultures of the wound and new twice-daily cleaning and debriding procedures.  Since we live in a rural area with limited access to home nursing resources, this lovely job will fall on me.  Every morning and evening, I have to remove the bandage, wash the wound with soap and water that stings, and then dig out any infected tissue using sterilized scissors, tweezers, gauze, and applicators.  This is a painful procedure that Abby naturally hates, and her screams and cries break my heart every time.  I feel awful for having to hurt her.  But by stripping her body of the infected tissue on the outside of the wound, she can heal from the inside out.  I have to cause immense pain in order to help my daughter to finally be rid of the infection that has caused her so many hospital stays and surgeries.  What a hard thing to put a six-year-old child through. But then ...

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.  

 Caleb officially had his school musical acting debut in The Little Mermaid!   He was Grimsby, Prince Eric's servant and confidant.  Caleb opened the show singing, "Fathoms Below" and also sang part of another song later in the show.  He sounded fantastic and looked so confident up there!  We were so proud of him and thrilled that he seems to have found his "thing!"   This was taken on the first night when the lights went up at the end of the show and he was able to see Abby.  He wasn't sure if we were going to make it home from the hospital in time, and he was thrilled that we were in the audience!   The talented cast of 4th and 5th graders! Caleb and a princess :) Caleb and Ariel :) We are certain that there will be many more musicals in his future, since he's already looking forward to the next one!  I think I'm officially a theater mom!

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. :!