Life as a Leach

Abby had a pulmonary appointment today, and it was awesome! I shared all of the pulmonary data we collect each day, and showed her how her high respiratory rates are trending down.  Abby also did another Pulmonary Functioning Test.  For the first time in a year, she was actually able to do the entire test without getting too exhausted to finish!  Her lung volumes have increased to 30%, which is amazing!  (It's all relative, but 30>15!!)  After discussing with her pulmonologist, we decided that we could cut the morning bipap time and also reduce the amount of saline nebs we do per day.  This gives us SO much more freedom and makes her respiratory treatments so much quicker!! Our pulmonologist was just ecstatic about how much better Abby was doing!  We are so thankful! The icing on the cake was that Abby's blood draw was super quick and on the first try.  We were in and out in 5 minutes!  Side note:  A year ago today, Abby cam...

Abby continued to need bipap off and on today, in addition to her regular scheduled times.  It seems to be about 3 hours after treatments that she starts needing bipap.  But she was in a pretty good mood and loved her visitors!  Matt and Caleb came this afternoon, and then my mom and dad brought Anna and Lucy this evening.  Abby was excited and surprised! Now, she's enjoying Descendants 2 on Disney Channel and getting her treatments.  :) As is typical for the hospital, things don't get done as quickly on the weekends.  Pulm ordered an echocardiogram to check for pulmonary hypertension (always a concern), but only emergency echos are done on the weekend.  They want to talk to CHOP about her thoracic insufficiency, but that can't be done until Monday.   Pulm did increase her pressure support to the highest setting in hopes that putting more air in her lungs will help.  We will hopefully see a difference tonight. If not, there will be many ...

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...

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 ...

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 ...