Life as a Leach

What an awesome day!  The weather was beautiful with low temps and humidity, which meant Abby could be outside!  We took full advantage of this today!  Her cousins were staying here, so they played in the water table, laid out on the hammock, and played with the fairy houses on the deck.   Later, some friends came to visit and we sat on the deck and ate had popsicles and played with light sabers.  There was a lot more hammock time too!  They all had a great time running around. In the late afternoon, we took a rare trip out of the house to our local beach!!  There were only a few families as far as we could see, the weather was gorgeous, and the kids had a great time playing in the sand, collecting shells, and getting their feet wet.  (Getting truly wet is a big no-no for Abby for several reasons, so we just told everyone not to go in any farther than mid-calf.) After a while, sweet Abs was so tired that she laid on the beach blanket!  She ac...

We saw Dr. Campbell this morning.  He took one look at Abby and said, "Well, we've gotta get that VEPTR back in!"  We wholeheartedly agreed!  When we asked about the opposing opinion we had before, he noted that in this case, being old equals having more experience in these situations.  He will talk to the other surgeon to let him know the plan. So what is the plan?  Well first, we have to get this wound healed up.  Nothing surgical can be done until it's closed.  When it is closed, we can schedule surgery.  The good news is that the wound shrunk a centimeter in both length and width in the last week!!!!  This is fantastic news!   The kyphosis still needs to be dealt with, but the ribs (well, the lungs) are the primary concern right now.  We may still go to Boston for the kyphosis, but we are going to take care of this first.   He also LOVED her shirt and took a picture of her to use in a slide for a presentation he is doing fo...

We had a pulmonary appointment yesterday where our Pulmonologist stressed the need for a plan for Abby from CHOP.  She echoed my frustrations from a medical standpoint.  We are really hoping that tomorrow will give us answers, but we have also gotten an appointment for Boston and are pursuing those plans.   We keep detailed data about her oxygen levels, respiratory rates, and necessary interventions.  I took it in to our pulm and she was very happy to have it.  After examining the data and the trends, she decided that it is best for Abby to be on bipap twice a day during the day.  She reiterated the big concern for germs and the danger of her catching even a slight cold.  We have decided that Caleb will change his clothes from school as soon as he walks in the door to hopefully keep those school germs out of our house.   So, as we already knew, no school until there are some big improvements.  Our pulm also helped us to create a plan for Abby...

This week is going to be a busy one around here.  Abby has 2 appointments in Baltimore on Wednesday.  She needs her hearing aid mold redone (it squeals constantly!) and she has a pulmonology appointment.  Not too much has changed with her breathing--she is usually still requiring daytime bipap, and sometimes needs it twice during the day.  There doesn't seem to be a rhyme or reason to it, except that it is always in the afternoon.  We have kept the temperature in our house lower in hopes that heat will not be a factor, but the weather has really been pretty mild anyway.  I don't think our pulmonologist will change much at this appointment, since there really haven't been improvements.  I have a feeling we will just "stay the course" with daytime bipap as needed, respiratory treatments and airway clearance 4x a day, and inhaled steroids 2x a day. On Friday, we have appointments at CHOP with the infectious disease team and our orthopedic team.  Th...

Here's me being wide awake at midnight because I drank too much caffeine today! 😳. I will pay for this tomorrow. Abby's appointment went really well today!  Our surgeon was pleased with the progress of the wound using the wet-to-dry dressings, despite the failed skin graft.  Her wound has shrunk nearly a centimeter since surgery.  He really thinks that this method will be best for Abby, even though it is the longest and slowest of the options.  The curvature of Abby's spine fights everything else he has tried, so this is now our best chance.  It is going to take a while, but it will eventually close.   I can't say enough about our surgeon.  He has been SO diligent and truly cares about Abby. He knows this has been a long road and he is not willing to put Abby through more surgeries without positive outcomes.  His goal is to keep her out of the hospital for a while, and we are hoping that too!  He really is a great guy! So, my theory was prov...

Well, I've been reluctant to say this, but it's official now...Abby's skin graft failed.  We pretty much knew it had just a day or two after getting home, but it fell off completely last night, leaving us with no hope.  She has an appointment on Wednesday at CHOP, so I guess we will see what the next steps are then. We were so hopeful that this would work, so it's a big let down.  We really aren't sure what we will do from here.  We are continuing with bandage changes 3x a day until we see him on Wednesday, but I'm guessing we will eventually try another graft. Abby is also needing bipap much more these days.  Most days, we have to put her on twice a day.  She is still happy and playing, but she is starting to recognize much more than she is having trouble breathing.  Several times, she has asked me to check her breathing because she can't catch her breath.  I'm glad she's becoming more aware of her body, but I wish she weren't needing the bi...