Monday, August 14, 2017

Appointments, School, and Looking Toward the Future

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.  This is the long-awaited discussion about what the plan is for Abby.  We are hoping that they will know where they will go from here and be able to give us a timeline of sorts.  They avoided us for 3 admissions, despite us practically begging them to come, and we are pretty sure it's because they really don't know what to do.  So now we have made an outpatient appointment so that they have to see us and gave them 3 weeks to figure it out!

Abby is complicated and we get that.  I know they have exhausted most surgical options.  But we aren't ready to give up and we don't want them to be either!  I've been researching other methods, doctors, and cases like crazy in the past few weeks.  There has to be something we haven't tried.  Matt and I have decided that if we don't leave this meeting on Friday confident that they have a plan and are willing to keep fighting for Abby, we will pursue a different surgeon--most likely in Boston.  It's not ideal because if we travel to Boston half as much as we travel to CHOP, the airfare will be ridiculous.  Not to mention, there are a lot of factors involved in switching to another hospital.  It's not a simple process.  But we will do whatever we need to do to take care of our girl.

So this week, please pray that the surgeons have a plan and are able to discuss with us where they plan to go from here.  This will determine how our pulmonologist proceeds and whether or not we will continue to be seen at CHOP.

Also please pray for Abby and Caleb as the start of school draws near.  Abby is not going to be able to go to school for the foreseeable future, which is heartbreaking for all of us.  I'm not sure that she quite understands what this means, although we talk about it a lot.  She will be getting home/hospital teaching each week, in addition to what I will do with her, but we don't expect that she will actually go to school for quite some time--if at all.  For a girl that is as social as Abby, this is a tough pill to swallow.  Caleb has also had a hard time with realizing that Abby won't be there with him.  That boy sure does love his sister.

The main reason for her not being able to go is that our pulmonologist has said in no uncertain terms that catching anything would be very dangerous for Abby.  Couple that with her need for intermittent daytime bipap and an unstable respiratory situation and it's just not a good idea.  When I asked our pulmonologist about school, she flat out said no.

This will also mean, of course, that we are extremely careful about who comes to our house. Being healthy is an absolute must--if you think you have a sniffle, don't come. Everyone removes shoes at the door and gets hand sanitizer.  Frequent handwashing is a must.  Naturally, no one who has not had the flu shot will be allowed to come to the house this year.  Since our pulmonologist has already said that Abby really can't go anywhere unnecessarily (meaning basically doctors' appointments), we are hopeful that we will be able to keep Abby's exposure to germs to a minimum.  It will certainly make things interesting around the holidays, but at least family members (who are healthy and who have had the flu shot) can come here to visit.

There have been a lot of plot twists since May, and most of them we would not have chosen. But what I am learning more and more each day is that God gives us grace for the moment and He knows Abby's entire story.  Since we can't skip ahead to see how the story ends, we are simply trusting that He will take care of our sweet girl that He loves more than Matt and I ever could.

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