Life as a Leach

We are on our way home after waiting most of the day for our surgeons to see us.  That didn't happen despite many emails and conversations.  It's frustrating and it feels like they are avoiding us.  We made an outpatient appointment in a few weeks when we already had other appointments scheduled, so now at least they have to see us.   At any rate, we are thankful to go home, armed with new wound care supplies and 2 new respiratory machines.  Here's hoping we will STAY home for a while.  

Today was our last day of hanging out until Abby gets her wound vac out tomorrow.  Matt will be here around lunch time to pick us up! Today, Abby and I went for a walk around the gardens. It was such a beautiful day with low humidity that Abby could finally spend some time outside! Abby was ecstatic to find 21 Kindness Project rocks in the garden!!!  We found one and started hunting until our bag was full!   We brought them back to her room, added some embellishments, and Abby picked out her 3 favorites to keep. A little later, we rehid the rocks all around the outside of the hospital property--and found 3 more Kindness rocks!  It definitely brightened our day and we hope they brighten someone else's!  If you're not familiar with the Kindness Rocks movement, look it up on Facebook!  We have been painting and hiding rocks all summer in our county and it is SO much fun!  Painting rocks is so relaxing and therapeutic.  The kids have really enjoyed it...

Abby was in a good mood for the majority of the day! We played with some new friends in the play room, went to the library and read books, visited the atrium, and perished the gift shop.  She also spent a good amount of time doing math and reading practice on this program called IXL.  There's an app for my iPad, so it makes doing the skills very easy.  She enjoys it and earns virtual keychains for mastered skills.  A little extra practice never hurt anyone! :) The plan is for Abby to go home on Monday after the wound vac is removed! She has had no additional respiratory concerns, so that shouldn't hold us up this time.   We are still actively trying to see our surgeons to discuss the long-term plan for Abby's chest wall, but it's proving to be more difficult than it really should be. We will be staying in Philly until we can see them! We simply have to have a plan for her. Her lungs can't take not putting the VEPTR back in.  Please pray that this meeting wi...

Abby had a good day today!  She has been feeling pretty good as long as she gets Tylenol and Motrin regularly.  The "donor site" (her bottom) is sore, but she is in otherwise good spirits. Today, she made a shark with the craft group and had music therapy.  As usual, she giggled over Mr. Pawel (her first crush!) and loved playing the ukulele. Yesterday, Abby and Matt were able to meet the Minions and go to a special hospital showing of Despicable Me 3!  Abby was thrilled to see it!! I loved seeing this sight as I walked down the hall!  The Minions were waving to kids on the oncology floor who were unable to come downstairs to meet them.  If you look closely, they are lining the windows.  😍 While they were at the movie, I was trained on Abby's new machines by our homecare company.  These will both fit our needs much better.   This is me taking our new vent/bipap for a walk.  Lol! For the weekend, we are just hanging out and trying to mak...

The skin graft is in!  He said the wound looks a whole lot better than it did 2 weeks ago and he thinks waiting was a good decision.  Now we are praying for the graft to take!  She will have a wound vac for 5 days and then we will see how it looks.  We should know by then if it is going to take. So, step 1 is done!  We are waiting to see her.

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...

Abby loves anything related to baby animals.  She's a sucker for the YouTube videos showing baby animals, likes looking at pictures, and is beside herself when she sees baby animals in person!! An opportunity came up for us to meet some brand new lab puppies in person.  After thinking a little, we figured out a way for Abby to see them while still maintaining her safety.  We drove to the person's house and brought a few of the puppies out to the car to see Abby!  She was beside herself all day until it was time. As you can see, she was ecstatic when she met them! There are silver, chocolate, and yellow labs.  Caleb loved the chocolate, but Abby and I adored the silver named Luna! They are the sweetest little things and Abby is already asking when we can go see them again!

We went into this pulmonology appointment today so nervous and anxious about what would be discussed.  As you all know, Abby's respiratory status has really declined with no indication that it is going to improve.  It's more obvious to us every day that the rib-to-rib VEPTR is the key to Abby's lung volumes improving, but that won't be able to be done for quite some time because her body has to heal from the trauma of the last year.  We discussed that today with our pulmonologist and she is hoping that she can provide support to Abby as a bridge until the rib-to-rib VEPTR is able to be put back in--whenever that may be. The question is, how much support is Abby going to need?  She's needing additional bipap during the day now and seems to decline after every surgery...and she has another one next week.  What will she be like after that?  The bottom line is that we aren't sure how much more her little body can take, or how long she can continue with such l...

The questions are written, the pulmonary data is collected, and the CHOP records are in a stack.  Physically, we are ready for tomorrow's pulmonary appointment. Emotionally, we are a wreck.  Tomorrow will hopefully answer a lot of questions, but it could also involve some really difficult conversations.  We are anxious. Thankfully, today was full of visitors and fun! This morning, Abby's teacher and assistant came for a tea party and they even brought a craft!   We all made very fancy hats--even Caleb!  Later, her friend Facetimed her from Sweet Frog to get her order, then delivered!  They had a great time playing and I got to spend some time catching up with my friend (her mom)!   Abby's appointment is at 12 tomorrow.  Please join us in praying for lots of answered questions and positive news.  

It's hard to write an update, but I'll try.  Abby is pretty much the same.  She gets worn out really easily, can't go outside in the heat, and her oxygen levels go down when she walks up the stairs.  She is getting nebulizer treatments and is doing the cough assist 4x a day, she gets wound care 3x a day, sometimes needs bipap,  and then medicines are on a different schedule, so I feel like I'm constantly doing something medical!  We are also keeping lots of documentation of her various numbers and when she needs to go on bipap so that we can prove to the insurance company that she needs a more portable bipap with a battery (the one we have right now doesn't have a battery, so it isn't portable.) I've been in close contact with pulmonology and we have an appointment on Wednesday.   Our pulmonologist doesn't want us taking Abby anywhere except doctors' appointments, so that is what we have done.  She's pretty concerned about Abby's respirator...

We headed home this afternoon!  We are all thrilled to be back under one roof for a few weeks.  We have added a few more treatments and I have lots of medical phone calls to make tomorrow.  But tonight, we are together!

Abby woke up really well after surgery and was watching Mary Poppins in the PACU.  We were happy to be able to go back to our room on the 4th floor instead of the PICU!   We are here for a few more days while we figure out Abby's breathing once again.  It's been mentioned that this respiratory rate of 80-100 breaths per minute might be the new normal, which I can't accept!  I didn't even like the new normal of 60 bpm!!  If her rate increases after every surgery...well, we can't have that. The pulmonologist reiterated the concern of her catching a minor cold being very bad for her.  Looking at her tiny little lungs on an X-ray today was disheartening. Caleb was able to go down to the atrium today for Video Game Day with Microsoft.  He was pretty much in heaven playing Minecraft for 2 hours!  I was shocked that there were open gaming systems the entire time we were there!  I thought it was going to be packed!  He also got a nice drawstring...

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. 

Caleb and I are at the hotel tonight (they didn't get into RMH).  I've been feeling like I might be coming down with something.  I got some NyQuil and I'm going to bed early tonight.  Caleb has had a great time in the pool and dinner here was really good.   Abby's surgery tomorrow is at 10:30.  Our surgeon isn't sure that he will be able to do the skin graft tomorrow.  He said it is 50/50.  He has a plan B that will involve us coming back for another surgery in 3 weeks.  We are hoping that the graft will be able to be done tomorrow, but we also want optimal conditions so that it will work! Abby was on the bipap off and on today, but we are hoping that the respiratory rate will improve when she is offof the antibiotic.  It has a side effect of messing with the respiratory system, and we think that what is happening.  I'll post about how things go tomorrow.  Thanks for praying!

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...