Friday, June 23, 2017

Last Day of Camp

In all honesty, I think Abby had more fun st Camp Leach than she would have at the real camp! Caleb and Anna didn't have as great a time as we had hoped and it seemed more like outdoor daycare than the real camp experience Matt and I are used to.  (Here's wishing we lived closer to Wananna!)

Today's camp activities included archery, dolls, and play dough.  Abby and her friend also decorated cookies,

 

And they painted more fairy houses and accessories!  Fun, fun times!
 

Abby was sent an awesome gift from a sweet teen we don't even know!  She mailed Abby one of her own American Girl dolls and an extra outfit!

 

It's been a fantastic week of Camp Leach, with one more culminating activity occurring this weekend.  The tie-dye kit didn't come in time, so we will tie-dye shirts this weekend!  This is apparently something Abby has been wanting to do for a long time, and we had no idea!  They did this at camp today, so Camp Leach will be tie-dying too!  

Abby was definitely showing her tiredness today.  Her respiratory rate was higher than it has been and her sats were lower.  I'm hoping she can relax tomorrow and SLEEP IN!  The girl has been waking up at 6 every morning!

Thursday, June 22, 2017

Another Fun Day

It was another busy day here at Camp Leach!  Another sweet friend of Abby's came to visit and the girls played so well together!  They both love dolls and has lots of fun with them.  We did chalk on the driveway and spent quite a while painting rocks for a new random acts of kindness initiative in our area.  So fun and cute!

 

 

After lunch, Abby and her friend enjoyed some Popsicles and Beauty and the Beast.
 

Matt's sweet cousin dropped off some ice cream (yum!!), and the kids thoroughly enjoyed their dessert!
 

I got Abby this little bubble blower at the dollar store the other day, thinking it might be fun respiratory therapy.  She did great with it and it made a ton of bubbles!!
 

Abby asked tonight if we could have camp next week too! :). Nope, this momma is pooped!  It's been a fun week though, and my girl has had a lot of fun.  That's all that matters !  

Wednesday, June 21, 2017

Surprise Visitors!

What a fun day!  Abby enjoyed spending time with a sweet friend from school.  They spent the day making bracelets, painting, coloring, and laughing...lots and lots of laughing!  Camp activities were a big hit today!

 

 

 


You should have heard the girls squeal when their teacher and Abby's one on one pulled up!!  We all enjoyed lunch together and then played an intense game of Uno Blast!  


It was a pretty fun day at Camp Leach!  Tomorrow promises to bring another fun visitor and new activities!  
 

Tuesday, June 20, 2017

Camp Day 2

Abby and Caleb both had a good time at camp today!  Caleb is building a fort in the woods and is enjoying the games they play.  It ended up that a friend from fencing is at camp too, so he has liked having someone his age that he knows.  Anna is having fun too!

Abby's mystery friend today was Lucy, and the two had a great time playing inside and outside today!  Shortly after this picture was taken, they got absolutely drenched. Or as Lucy says, "drunked!"  😃

 

The fairy houses are coming right along and we should finish by the end of the week.  I'll try to take a picture tomorrow.  

I have some new tricks up my sleeve for the rest of the week.  Abby told me that this week has been really fun so far--not as fun as the real thing, but fun! 😂. I'll take what I can get!

Monday, June 19, 2017

The New Normal

We are adjusting to our new normal at home.  Chloe is loving having Abby home and follows her around most of the day. She definitely missed her!

 

We are all very happy to be back together again.  Life is different though. Abby has lots of respiratory treatments and medicines throughout the day.  We realized very quickly that going up the stairs was too hard for her when she collapsed at the top of the stairs.  Now, we do everything that needs to be done upstairs before she goes down.  Then she doesn't go back upstairs until bed (and Matt has been carrying her).  She tires easily and coughs a lot. 10 minutes outside yesterday was too much for her and she was gasping for breath.  It's frustrating to her that she can't be as active as she was.

We are hopeful that it will get better and are trying to make things as fun as possible.  Since she's missing the camp she was supposed to go to this week, we are having camp here!  We did arts and crafts, water play, nature time, making fairy houses, computer time...all of the regular camp activities!  She loved it today.  For the rest of the week, she will have surprise visitors come to camp too!  She knows she will have visitors, but she doesn't know who.  I know she will be very excited!

 

 

Wednesday, June 14, 2017

And We're Outta Here!!

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!

 

Tuesday, June 13, 2017

Family is the Best Medicine

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 her respiratory system.

My germaphobic ways will be kicking into high gear, and we will definitely have to be even more careful with Abby. We are anxious to talk to the pulmonologist tomorrow to find out more about what this means for Abby.

Monday, June 12, 2017

Great day!!!

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 the new Beauty and the Beast movie and we are going to have a movie party! 

If Abby has another good day like this tomorrow, our time at the hospital could be coming to an end!!  🤞🏻🙏🏻

Sunday, June 11, 2017

3 weeks of CHOP

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 progress.  We are getting there, friends!  God is healing those lungs, slowly but surely!  Thank you for praying!

Saturday, June 10, 2017

Post op day 20

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 to get the right VEPTR put back in.  We believe that this is the key to her maintaining decent pulmonary functioning.  There's a lot down the road that could very well happen if Abby's ribs aren't able to expand properly, and none of it is positive.  It's just not typical for VEPTR kids to move backwards and end up needing bipap and such, so we truly feel that getting that right VEPTR back in is necessary.  But first, she needs to heal!

Friday, June 9, 2017

Post op day 18

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 knows her so well, she is really concerned that Abby is relying on bipap during the day.  There's a huge difference between using bipap at night to conserve energy and help you have enough for the day, and absolutely having to use it to keep your carbon dioxide levels down and be able to breathe properly.  This is where Abby is right now, and her instability is concerning and worrisome to her and us!

I'm really glad she spoke up about this and took control of everything.  We all feel that either they need to successfully wean her or find a definite cause for this sudden decline.

So, until one of those two things happens, Abby will stay here in the hospital.  We really aren't sure how long that will be, but we will follow her cues.  

We are making the best of it and lining up some visitors for the next week!  If you would like to send a card to Abby, I know it would brighten her day!  Her address is:

Abigail Leach
8 South Room 18
The Children's Hospital of Philadelphia
3401 Civic Center Blvd
Philadelphia, PA 19104

You can also send an e-card by going online to the CHOP website.  The hospital will print them out and deliver them to her.  This is the link:  http://www.chop.edu/patients-and-visitors/contact-patient

Thank you all for your support!

 

Thursday, June 8, 2017

Post op day 17

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 give lots of "I love you" signs!!  She was thrilled to see everyone, but it also made her really sad. Abby loves school and was so disappointed that she couldn't be there for the last day.  She definitely shed some tears today.  She is sad to say goodbye to her teachers, but has told many people here that she's glad her helper Mrs. D will go with her to first grade because, "She'll stay with me as long as I need her!" 💓. Abby absolutely adores her and so do we!!

Another heartbreaking issue that has come up is that Abby feels like the need for bipap is a result of her not trying hard enough.  When we put her on because of her breathing, she pleads with me that she will try harder.  😭. As much as I have tried to explain that it's nothing she does or doesn't do and that her body just needs a little extra help right now, she's been really down about it.  We had Child Life come in to talk to her too, but it's still rough.  We have had to hold her down to put her mask on during the day. 😔

Our pulmonologist at home has been in contact with me quite a bit and is concerned about Abby's decline....as are we!  She has known her since birth and has seen her progress and relative lung health, so this is very different for Abby.  Our pulm is not sure that Abby is ready to go home and would like to talk to the pulmonologist here to discuss the plan of care. I haven't heard the result of that phone call, but I'm really hoping we will hear tomorrow.   I fully trust our pulmonologist and we will do anything we can to get Abby better.

Things are tough right now.  I obviously don't want this for my daughter--having to be watched constantly for signs of respiratory distress, being tied down to a bipap machine multiple times a day...Abby is too spirited for that.  But today, even after a 2 hour lung break on the bipap, she only lasted an hour before needing to be put back on it again.  She got winded and couldn't catch her breath just walking halfway around the unit this evening. We just want to know why this is happening, and we want her to get better.  She's not the same girl she was when she came into the hospital, and that breaks my heart.

We would appreciate your prayers for Abby's emotional and physical wellbeing, and for our stress as a family.  We are thrilled to have the boys here this weekend and I'm looking forward to spending some time with Caleb.  This has been tough on him too.  It was good to be a family tonight. 💜



Wednesday, June 7, 2017

Post op day 16

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, Mr. Pawel!  She actually got a real ukelele lesson today and learned the two chords needed to play the chorus of "I'm a believer!"  She was so excited and was incredibly serious and focused the entire time.  I definitely see ukelele lessons in our future! 

 

She also enjoyed banging out a beat on the drum kit for a while! 😝

 

One of the things I really like about Pawel is that he totally lets Abby lead the session.  Sometimes when she has really been feeling rotten, he just plays quiet lullabies on his guitar.  During particularly awful times like dressing changes, he sings silly songs to distract her.  Other times they play copy cat on the instruments.  And then, like today, he actually teaches her some skills on the uke or keyboard.  He goes with the flow and is so great. Music therapy is so important in the hospital setting!

Abby and I are thrilled to see Caleb and Matt tomorrow.  They will come up tomorrow after school (the last day!) and stay for the weekend.  We have missed them so much!

Tuesday, June 6, 2017

Post op day 15

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 out!

 

We have been going to the library every day for a change of scenery and to read some books together.  Today she did some learning games on the computer too.  We are on our 3rd chapter book this admission now.  She's really enjoying being read to so much and it's a great alternative to watching tv all day!  We are reading American Girl books, so we have had a few history lessons too!  

 

Abby is so sad that she won't be able to go to the last day of school, but we have plans to FaceTime her class so she can say goodbye.  This has been a hard year, but her teacher has done SO much to help Abby feel accepted and loved!  We are so grateful!!

Monday, June 5, 2017

Post op day 14

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.


Sunday, June 4, 2017

Post op day 13

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 it was happening, so it wasn't like she over-exerted herself or anything. I'm trying to get her to recognize for herself when it becomes harder, so we talked about how she felt before and after the bipap was put back on.  We kept her on it for 2.5 hours and then took her off for dinner.  She went back on for bed.  I'm not sure what that will mean for her timeline, but I'm sure we will talk about it tomorrow at rounds.  The bottom line is that we want her to be safe going home.  If that means we stay longer, them so be it.

Tonight she was able to be put on her home bipap machine!  We want to make sure she tolerates that well before they send her home on it.  It's much smaller than the big one they have here!  And I also was able to figure out how to find the information I needed!  The girl said I didn't have access to that, but I do!  That will make me feel much better.

 

Thank you for your continued prayers!  Our girl has been through a lot during this admission, and her body is very tired.  It will certainly take a while for her to build up her endurance.

Saturday, June 3, 2017

Post op day 12

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.  She enjoyed a piece of pizza and a donut tonight!

 

We even went to the family library for a little while and read a book.  It was just so nice to be out of the room!

Tonight, she did some more coloring and we put the rest of her Lego set together.  Like her coloring position?!  Ha ha!

 

Her pain has been great today and she seemed to really enjoy being free!  Let's hope tomorrow is even better!

Friday, June 2, 2017

Post op day 11

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 pressures, but I do!  Abby isn't the typical kid on bipap.

Quite honestly, this "new normal" is a little nerve wracking for us.  Seeing Abby's respiratory status decline is scary and we wish she would have bounced back a little faster.  But after the first terrifying days, we are thankful she is with us and will be coming home soon!