Life as a Leach

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 c...

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...

Yesterday proved to be a bit much for Abs.  She fell asleep at 6 pm and I had to wake her up at 10:30 am!!  She also, unfortunately, got sick last night and lost her entire feed.  It was sad. :( Her respiratory rate was also really high all night, so the team took these 3 pieces of info and decided that maybe we pushed Abby too far.  They decided to step back a little to two 2-hour sprints today.  She did really well today and was able to stay awake all day for the first time.  I'm hoping we are headed in the right direction. Abby enjoyed lots of arts and crafts today!   She made a red panda craft,   And a picture of Poppy (with a little help from the art therapist!)   She also finished this lovely stained glass project from a fellow VEPTR family!   She spent a lot of time playing with Model Magic too.  We made snakes, a bird nest, eggs, a bird, flowers, and a butterfly.  It's pretty fun! We also did quite a bit of walking toda...

It was a much better day today!!  Abby did a 3.5 hour sprint and 3 hour sprint off the bipap!  She also went to the playroom twice with therapies and was cleared to be able to get up and walk around the unit without a continuous pulse ox.  This makes both of us very happy!  🎉 The other good medical news is that she is cleared to eat what she wants now.  🍩  They are still pumping her full of extra gtube calories, but I'm hoping that will decrease as she eats more.  I thought she ate a great lunch, but the dietician wasn't impressed.  She obviously doesn't know Abby's eating habits!!  Tonight, she drank lemonade and ate 4 packs of butter.  😳   She took a nap in the early afternoon and is also currently asleep.  She always seems to fall asleep right after her sprints because they just wear her out.  I'm not going to let her sleep super long because I want her to sleep tonight...although, that probably wouldn't be an issue ...

What a busy, traumatic day for poor Abs!  She was awoken at 6 am by the plastic surgeon residents removing her dressing (not very gently!). Then she had a repeat ultrasound of the blood clot in the arm that took over an hour and wasn't overly comfy because they had to look at the deep veins.  The clot is still there, but I haven't heard anything about what they want to do about it.  I expect that I will hear tomorrow during rounds. A little after the ultrasound, her plastic surgeon checked her back and noticed a bit of skin breakdown from the special stabilizing sutures he put in, so he took them out. Her incision was cleaned and rebandaged. Abby hasn't been able to "go" since before her first surgery, despite quite a few interventions. They pulled out the big guns today, resulting in a painful hour or so! PT came soon after that, and Abby was able to walk to short distance across the hall to the playroom--albeit screaming and crying!  She had just gotten settled ...

Look who has moved on up to the pulmonary floor!!   We are thrilled to be in a corner room close to the playroom and laundry!  It's really quiet here and she has a nice, big room.  I think we will both sleep much better here!  But most importantly, we are thankful that she is well enough to no longer need to be in the PICU! I'm still processing all that transpired in the last week.  My girl was so sick and we were terrified.  To see her now, being sassy and demanding, is such a gift.  We are so, so thankful.  Today, I let out a huge breath I didn't realize I was holding.   In other news, this boy enjoyed his first (coffee-free) Starbucks today!  It was a hit!   Matt and Caleb headed home today.  I'm so thankful Matt was here during the scary stuff and that Caleb was able to spend the three day weekend with us.  We miss them already!

Woo hoo for another good day!  Abby was able to be off the bipap for 3 straight hours and did great!  She did another 2 hour sprint before bed tonight.  This one wasn't as smooth because her ribs were really hurting and it took a while to get that under control, but I was able to distract her some by reading a few chapters in a new book.   She still has a ways to go before she can get out of the PICU, but we are hoping that will happen in the next few days.  Today's success was very encouraging! We did find out that Abby will be on antibiotics for a very long time:  for as long as she has hardware.  Since the veptrs are needed in order to hold her rib cage open and expanded, she will always have hardware.  This would mean she will have antibiotics for forever.  They have very good reasons for this, so we trust them.  It wouldn't be my first choice, but it's the best choice for sure.   Caleb and I enjoyed some wonderful time together...

What a difference a day makes!  Abby is doing so much better now.  She had some great awake times where she watched cartoons, played on the keyboard, and even talked a bit!   Abby ended up not getting the PICC line because everyone felt there was too much danger in putting her under anesthesia again.  Instead, we worked hard to switch her to oral pain meds and antibiotics, after making sure she tolerated her feeds.  So far, so good!   I'm spending some time with my boy at RMH tonight.  We played games and did a craft, and are now watching a movie.  I love my boy!  I will be nice to get a good night's sleep too.