Tuesday, July 25, 2017

Purple for Abby Tomorrow!

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!  It's time to give her body a break so it can heal!

Saturday, July 22, 2017

Puppy Love

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!

Wednesday, July 19, 2017

The Hard Things

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 little lung functioning.  At 25% functioning, our pulmonologist said she typically starts talking lung transplant with her cystic fibrosis kids.  Abby is at 15%...but she is not a candidate for a lung transplant because it's not a lung issue--it's her anatomy.  Giving her new lungs won't change that.

Our pulmonologist said she never expected to have this conversation with us because Abby had been doing so well for so long.  And yet, here we are.

But there is hope.  If Abby continues to decline, she could get a trach again and be put on a ventilator.   While life would change for our family, she could be stable and safe with a trach and able to have a relatively good quality of life.  And given the alternative, we will wholeheartedly choose a trach.

For many, a trach would be terrifying.  And in a way, it's still pretty scary for us to think that Abby could be heading that direction again after doing well for so long.  But we've done a trach and vent before, and nothing can squash Abby's zest for life!  She can still be her sassy self with a trach.  It's amazing to think that a tiny tube of plastic could save Abby's life twice.

We aren't there yet.  She is currently managing with bipap support.  Right now, our awesome pulmonary team is working hard to get us a more sustainable machine that can give more support than a basic bipap can, as well as a more portable cough assist machine and oxygen concentrator.  The machines we have now are large, heavy, not very portable, and don't have internal batteries.  They certainly aren't easy to take with us to appointments!  I think the insurance representatives should shadow us for a day before making any decisions to approve or deny any equipment or treatments.

We will continue with bipap at night and as needed during the day, as well as giving her some oxygen support.  Her respiratory treatments will continue 4x a day for the foreseeable future.  After this next hospitalization, Abby will have a sleep study and then another pulmonary appointment to check on her status and discuss the results of the sleep study.  Between now and then, we will be in close contact with pulmonology and were told to go to Hopkins ER with any further decline in respiratory status.

So, while this appointment included a lot of tough discussions, at least we walked away with hope and an option.  A trach and vent might not seem like good news, but it was in a way for us because we weren't sure if we had any options at all.

Thank you all so much for your prayers.  We will continue to fight for Abby and do whatever we need to do for her because we know she's not ready to give up.  There's way too much sass in her!

Tuesday, July 18, 2017

Pulmonary Appointment Tomorrow

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.  

Sunday, July 16, 2017

Abby Update

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 respiratory status, considering she averages 65 breaths per minute these days.

Abby doesn't seem to care too much about staying home, but Caleb gets bored.  I'm trying to keep it fun around here while also trying to get some things done during the time we are home.  My mom has been a HUGE help!

Lots of people have brought smiles, either with visits, texts, calls, or sending cards and packages.  We are so thankful!  Yesterday, caleb and I spent some quality time together at a movie and dinner.  It was fun to hang out with just him.

Unfortunately, the special template that was put on Abby's wound to stimulate skin regeneration started coming off of the staples a few days ago.  Despite contacting our surgeon, sending pictures, and doing exactly as he said, it came off completely 2 days ago.  It's disappointing because we wanted this to stay on until surgery to give her wound the best chance.  Our surgeon has us doing wet-to-dry bandage changes 3x a day now, and we are hopeful that this will work.  

This is tough, guys.  It's hard to see Abby like this and she is frustrated with her limitations.  We have a lot of decisions to make, and we are looking to our pulmonologist to give us some guidance on where to go from here.  Please pray for our appointment on Wednesday.

Sunday, July 9, 2017

Home Again!

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!




Friday, July 7, 2017

Here for a Few More Days

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 bag and aluminum water bottle, which we can always use!



This evening, they allowed Abby to get up and walk around a bit.  It was nice not being tied down by heart, lung, and CO2 monitors!!  We spent time in the playroom and sat on my bed playing games.  She really liked my new pillow, but got sassy when I tried to take her picture.  I caught her mid eye roll!