Life as a Leach

Today, my sweet friend Betsie made the 3.5 hour trip up to spend the day with us!  Her last name is Camilliere, which is hard to say, so Abby calls her Camel Mary.  :). 🐫 Cam is one of those people who is just so full of life and energy that it's contagious!  She has been there since the very beginning with Abs, cheering her on and encouraging me.  Abby adores her.  True to form, she bound into Abby's room lugging a HUGE bag full of fun surprises!  Abby was THRILLED!!  She then promptly pointed at me and then the door, saying "Goodbye Mommy!"  😂. She's a bit possessive over Camel Mary! Since I was kicked out (not really--Betsie and I had discussed it ahead of time!) I decided to actually take a little time for myself and get a pedicure at a nearby place.  It was wonderful!!   Cam even sent me with mindless magazines to read during my pedi!   I grabbed some lunch after and just enjoyed a little time out of the hospital.   I t...

Today was a much better day!!  We were moved mid-morning to a private room, which I was really grateful for after listening to our roommate's dad cuss out his ex-wife (the child's Mom) right in front of his kid.  That poor little girl.  Abs and I did a few 4th of July crafts and played several games.  Here are the glasses she made!  We hung out in the playroom quite a bit today.  She's walking well and doesn't fight me about taking walks around the unit.  Facebook Filters are also a fun way to kill time, and she cracked me up with her poses! We are grateful for our freedom and are looking forward to fireworks tonight!

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. ...

Abby is in the PICU for another night because she is getting her wound vac changed tomorrow and will be sedated.  They want to make sure she is safe with the sedation.  We've been hanging out and said goodbye to another roommate today.  She's still not allowed to go anywhere and most of the playroom toys are locked up for the weekend, so it's been lots of tv time around here...not my favorite, but hopefully we will get some toys tomorrow from Child Life!

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...

We are on the road and heading home!!  We had a bunch of stuff to get through today, but it all got done and we are outta here!!  Soooo excited to go home!  

Abs had another fun day with her cousins and Aunt Amy!  They played in the playroom for much of the day, played s very silly frog eyes game, and also watched the new Beauty and the Beast that Aunt Amy brought for Abby! This afternoon, Abby went to the pulmonary clinic for a pulmonary functioning test (PFT). Abby has had many over the years and is very used to these.  She has been holding strong at 40% lung volume for several years, the last test being at the end of March. Abby worked very hard today during her PFTs and was fully cooperative.  Unfortunately, her lung volume was at 16% today.  The respiratory therapist felt this was a very valid test.  We haven't talked to the pulmonologist since the test, but we know that having lungs this weak will make her even more susceptible to germs and that a little cold could make her very ill.  The resident attributed this sudden decline to the combination of the right VEPTR being removed and the sepsis attacking he...

Today was a fantastic day for Abby!!  They decided in rounds that they would see if she could make it 12 hours (our goal) today...it's currently s few minutes after 7 and 7:45 will be 12 hours!!  She has had a great day!!!  😃🎉 I attribute much of that to her cousin's and aunt being here to visit for a few days.  She has perked up so much since they came this afternoon!  It was awesome to see! They spent some time playing with the toys here, including a new Frozen set a sweet friend sent to her.  She also sent her an adorable personalized Frozen book bag!   Later, we took the girls to the gardens we have discovered. They had a bit of fun in the various fountains!  Lucy was absolutely drenched, but the hot sun dried her quickly.          The girls had a great time exploring and it was so nice to be out of the room!   I took this sweet one of Abby.   We have more fun planned tomorrow!  Aunt Amy brought her th...

I love CHOP.  Don't get me wrong--I really do!  But we have officially been here too long when I'm counting in weeks instead of days! 🙄 But the good news is that Abby had a great day today and was able to be off the bipap for TEN hours today!!  Our goal is 12, so she is almost there!   In addition to Matt and Caleb being here, Abby also had another special visitor--a really live beauty queen!  My cousin's friend Ashley has been following Abby's story for a long time and we were finally able to meet today!   She brought Abby a bag of goodies, including her own crown and a pair of sparkly bedroom slippers!  Abby was in heaven!   Abby really enjoyed seeing Ashley's fancy crown.  She kept commenting on how sparkly it is!   It was a great day, with lots more fun in store as my sister and her kids visit, and then my parents later in the week!  They will all be welcome distractions and motivators, for sure! I'm so thankful for the progres...

We are so far away from the surgery at this point that it seems silly to count it as post op day ------!  Starting tomorrow, I think I'll have to come up with some better titles! It was a fun day today visiting with some great friends of ours who brought their family up to see us!  Abby and Caleb are close friends with their two boys, and the 4 played as if nothing had changed at all!  Abby was the happiest and best breathing-wise that I have seen her!  We were having such a great time chatting that I didn't even take any pictures.  :) Thank you to all of you who sent e-cards!!  What an awesome surprise to receive 11 in one day!  Abby loved all of your notes!   We are on the slow and steady plan, but we are hopeful that Abby will be able to come off of bipap during the day.  This happening will symbolize her return to relative health and stability!  Please also pray that her incisions continue to heal and that she will eventually be able...

Abby was still fairly rotten today, but I let Matt handle must of that!  Tag, you're it! 😉. They kept her Valium levels the same today, since she had such a bad day yesterday. We all played in the play room quite a bit and also went on a walk/ride to the rooftop garden again.  It was a beautiful day!       We found another garden as we were looking down from the rooftop garden.  There were some really cool water sculptures there!   My pretty girl loved all of the flowers!   We were a bit frustrated with the pulmonologist here, who just barely made an attempt to contact our Hopkins pulm yesterday...it was a feeble attempt at best!  I got her a different, more direct number this morning, and she still hasn't called at 4:30!!!!  Knowing that it was Friday afternoon and CHOP was planning a discharge of Monday, we really wanted the two to talk.  She finally called Hopkins and they were able to talk. Because our pulmonologist at Hopkins ...

I'm not gonna lie.  Today was rough.  Abby was withdrawing from the Valium wean they are doing, and was in an awful mood today!  She spent most of the day yelling at me, along with having several other withdraw symptoms.  The doctor decided to go back up a little on the Valium so as not to go too fast.   I did have to take a little break for a while.  Hospital life isn't easy and her attitude didn't help.  I reached my breaking point today and had to walk it off.  I also may or may not have asked the nurse if there were any bottles of wine stashed in the supply room!  😳. Luckily, a great volunteer came to do a craft with Abby and gave me an hour off!  Her timing couldn't have been better! (I'm wondering if the nurse called her, figuring maybe this was the next best thing to wine!) 🍷 One great point of the day was getting to skype with her class one last time.  She was able to say goodbye, sing some of the favorite class songs, and...

Thankfully, Abby was able to make it until her 7:30 goal tonight, with her 2 hour "lung break" built in after lunch.  I'm hoping this continues and we can start cutting the lung break back.   We are also actively weaning her from her Valium.  She's been on a pretty hefty dose around the clock and our pulmonologist wants to make sure the wean doesn't affect her breathing.  We have been watching her carefully for withdrawal symptoms, but so far so good! She spent some time in the playroom this morning, as usual!  One of the positives of being on a floor where most kids are on precautions is that you pretty much have the playroom to yourself! 🤣   We have been fortunate to see lots of VEPTR families while we have been here!  It's always nice to talk with other families who get your life.  Neither of these girls were feeling picture time, but we did it anyway! :)   The highlight of Abby's day was getting a visit from her favorite music therapist,...

We went a different angle today and the doctor tried planning to put Abby on the bipap after lunch for 2 hours before she started working really hard to breathe.   During lunch, I noticed her working really hard and would have put her on then anyway, so she definitely needed it.  After 2 hours, we took her back off and she lasted until 7.  She started working really hard again and we put her back on.  It sounds like she will very well go home with this plan, which is disappointing.  It will also slow down some of our summer fun.  Her body just isn't ready to be without some extra support. We don't want to keep her in the hospital where she can catch something else, so it seems like this is probably the best option. We did have some good fun today though!  She spent lots of time in the playroom.     We visited a new garden that just opened.  It's over 3 acres on the 6th floor of the outpatient building and has lots of fun things to check ...

Unfortunately, Abby was unable to make it a full day today.  They wanted her to make it until 7:30 (her typical bedtime), but she started struggling around 3:00 again.  The doctor came in and felt that she needed to go back on the bipap.   I really like the pulmonologist, and she knows our home pulm very well.  They are similar in approach and I appreciate her caution.  She just doesn't think Abby is quite ready to wean all day yet and that she just needs a little more time.  After going back on her bipap, Abby fell asleep for several hours--a very deep sleep!  It was obvious that she needed the "lung break," as we have started calling it. So we will just keep plugging away at the weaning and praying that she can make it all day soon. Once she goes all day for 2 days, we can come home. We will get there.

Well, we have been here 2 weeks now (post-op day 13).  I've been trying to keep Abby busy and moving as much as possible.  We went on lots of walks around the unit, including one that focused on keeping her head up and straight (for short periods--that is very difficult and painful for her!). We also "escaped" again and got a few things in the CVS downstairs and picked up a sandwich at Jimmyjohns across the street.  (She was REALLY unsure about that being ok!  Lol!) Abby has also continued to do lots of crafts, as usual!  She painted a keepsake box for a friend at school.       We also spent a fair amount of time playing in the Batcave, fighting off the bad guys and being protected by our guard dinosaurs.  😂   Abby started out great with her all-day sprint, but she needed to go back on around 3 pm because she was working so hard to breathe (in the 70s-80s!) and she was retracting quite a bit.  She was also just sitting in bed when ...

Today was a really good day!  Abby did two 4+ hour sprints, meaning that she only had her bipap on for a few hours today.  She never took a nap either!  It sounds like we are going to try keeping her off all day tomorrow and see how it goes!  Grammy and Pop came to visit and they brought Caleb with them.  They had a great time in the play room and watching a movie.  We took a walk around the unit, which still isn't easy for Abby, but necessary.  Abby did some crafts with Grammy too, which have been fun.   We were also finally able to leave the floor this evening!  After two weeks of not being able to go anywhere, it was nice to have a change of scenery!  We even went outside for a little while!  Abby kept asking if I was sure this was ok! 😂  (I had her portable pulse ox on her the entire time and she did great!) We picked up a food voucher from her nurse that allowed her to eat in the cafeteria instead of ordering a tray. ...

It was an exciting morning here!  Abby's wonderful teacher Skyped her in so that she could participate in the Author's Tea they had for their families!  Abby was able to read her story to her friends and hear some of theirs as well.  She was thrilled to see everyone, and told anyone she saw today about skyping with her class! Abby also had a special visitor today, just in time for her bandage change!  Tarot got in bed with her and let her snuggle and hold a paw through the pain!   She was able to sprint for 3+ hours twice today, but she did sleep pretty hard this afternoon.  We will see how she does tomorrow.   The bipap machine we will have at home was brought today.  It's pretty small and compact, but we don't have access to the information that I would like to have.  It is sent by Bluetooth to the homecare company, but we can't access it.  I'm sure a lot of people on cpap or bipap don't care about respiratory rates and inspiratory pre...