Monday, July 31, 2017

On Our Way Home

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.  

Sunday, July 30, 2017

Sunday Funday

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 too!

Saturday, July 29, 2017

Good Day

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 will happen on Monday.

Other than that, it's been a great, easy admission!  Tomorrow we might explore a garden or two if the weather is better.

Friday, July 28, 2017

Just hanging out!

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.  πŸ˜

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 make the best of being in the hospital.  The wound vac should be taken out on Monday, so we are hoping the end of our latest "vacation" is near!

Wednesday, July 26, 2017

Surgery update 3:00

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.

Surgery update 1:20

Abby just went back.  Our surgeon is hopeful because he things the site looks we are going with lucky #30!  πŸ™πŸ»

We aren't sure if she will go to the picu or the floor.  They have a bed reserved on both. 

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!

No skin graft today

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!

Surgery update 10:25

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

Thursday, July 6, 2017

Hotel Night

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!

Wednesday, July 5, 2017

Camel Mary to the Rescue

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!"  πŸ˜‚. 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 thought about it while eating lunch, and I'm pretty sure the last time I took time for myself was in April when I got my hair cut. πŸ™ˆ So today was much needed! 

While I was taking a break, Camp Cam was in full force!!!  Oh my goodness.  This girl didn't just bring coloring books or a game.  She brought multistep crafts that included items like sand, glow in the dark puffy paint, sensory beads, "sea" themed animals, and food coloring.  Oh, and a laminator....because everyone packs a laminator for a hospital visit!! πŸ˜‚. They made an ocean bottle, played with sensory beads, made personalized "where's Abby" pages, treasure boxes, and made a firefly bottle.  So fun!  

It was such a nice visit!  Unfortunately, Abby's respiratory issues have increased and she needed the bipap quite a bit today.  Her respiratory rates have been higher today than I've ever seen them--over 100, and sustained in the 80s and 90s.  Her CO2 is being continuously monitored as well, and has been increasing.  We are unsure of whether this is due to the antibiotic she is on or something else, so they are drawing bloodwork first thing tomorrow to check a few levels.  In the meantime, I'm hoping we can stay here in our lovely, quiet single room instead of moving back to the PICU!

Tonight, please pray for decreased CO2 levels and slower, deeper breaths.  But I'm also thankful for a wonderful day!

Tuesday, July 4, 2017

Happy 4th of July!

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!

Monday, July 3, 2017

An πŸ™„ kind of day

I've lost count of how many times I've used the πŸ™„ 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!!!!! πŸ™„  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. πŸ™„ I was a nervous wreck the entire time, impulsively wiping surfaces and using hand sanitizer.  All I can do is pray that Abby won't catch anything.

The baby finally left, and we finally foundout at  4 pm that we had a room on the 8th floor....but they brought her a crib.  πŸ™„She hasn't been in a crib in 5 years.  Turns out, beds are a hot commodity there.  And they apparently can't take beds from other floors, so they couldn't take Abby. Crazy.  πŸ™„

Plan B:  Abby will go to the 4th floor.  She was thrilled to go with all of her old friends, but we are STILL waiting and it's going on 9 pm.  πŸ™„. Our stuff is completely packed up.  I reluctantly unpacked her bipap to hook her up and put her to bed.  πŸ™„

There was much discussion about what antibiotic to give Abby.  Plastics wanted to keep her on vancomycin because this has all been such an ordeal.  The PICU team said what grew is on everyone's skin and she shouldn't be treated at all.  πŸ™„. Infectious disease fell somewhere in the middle. I agree with Plastics--let's kill this once and for all.  

Everyone finally came to an agreement that a different, but still very strong, antibiotic that can be given orally is the best choice.  It comes with its own concerning side effects, which I have voiced.  We will keep a close eye on her.  

In my non-hospital life....someone apparently backed into our parked van the other day when we were at the zoo.  πŸ™„. We didn't notice anything (it's almost 8 years old, so it had a few scratches already!), but all of the sudden the back hatch wouldn't open.  πŸ™„. When you have a kid in a wheelchair and lots of suitcases, this is a bit of an issue!  

Matt took it today first to the dealership, where he was told they would have to destroy the entire hatch to get in there.  πŸ™„. AND, there's nothing wrong with the air conditioning that we have had problems with for a year now (we have taken it 3 times and they keep saying it's fine because it works when they drive it!).  πŸ™„

He went to an autobody shop this afternoon, where the mechanic was the one who noticed we had been hit and the hatch was jammed.  Thankfully, it doesn't appear that the entire hatch will need to be replaced, keeping the price fairly reasonable in the world of autobody repair!  It's frustrating that some dirtbag would back into a vehicle and not leave a note!  πŸ™„

Like I said...lots of πŸ™„ moments today.  Tomorrow will be a better day, where we will once again make 🍹out of πŸ‹.  

Sunday, July 2, 2017

Still in the PICU

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!

Saturday, July 1, 2017

Post op Day 1

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 good that the waiting period happened over a weekend when not as much can get done anyway. 

Tonight I'm at RMH with my favorite little boy.  We played some air hockey, listened to music, watched part of a movie, and played on the computer.  We also brainstormed some ideas for our staycation.  :).