Life as a Leach

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 ...