Afternoon Update – Dec. 21

2 days left. That’s the big update.

In other big news, our chair lifts are delayed because of parts and holidays. One should be installed the second week of January, but the one going from the basement to the second floor hasn’t even been scheduled since they are waiting on one of the parts. We talked with PT and OT about this and PT started Megan on “stair bumps.” Basically she sits and then uses her arms and leg to lift her up one stair at a time all the way to the top. This is as draining as it sounds, but Meg has been doing great at it in the two PT sessions where she has practiced.

We had a discharge meeting today where we went over upcoming appointments with various doctors as well as medications and other things we need for discharge. I’m glad we had this meeting if for no other reason than the neuro-ophthalmology appointment was 5 days after her first cardiology appointment post discharge. This isn’t terrible by itself, but we need an MRI before the NO appointment and she can’t schedule that until she is released for an MRI from cardiology. With just 5 days that isn’t going to actually happen, so we have to move that appointment.

Also just talked with the outpatient rehab facility. We have Megan starting outpatient in Fauquier on January 4, but they were saying we need to get orders from the doctor. Only Megan currently has 7 or 8 doctors who are currently following her. I thought the doctor here at rehab would be the one to do this, but they said it needs to be someone following her after she is discharged, but we do have follow up appointments here for outpatient clinics, so maybe the rehab doctor is the right doctor for this. We have so many appointments with so many specialists but we also have her primary care doctor in Front Royal. Somehow we need to get this all sorted so she can start doing her rehab.

There is also the issue with dressing supplies. Insurance won’t let the supply order until the day after her discharge. They won’t pay the day of because there is billing from inpatient services that day and outpatient supplies can’t be shipped till the following day.

That’s fine, except the day after is the 24th, then the 25th, then a Sunday so when will the supplies be shipped?

Fortunately the team here is planning ahead and will ensure we are loaded with supplies before we leave to last up to a week because with the holiday weekend we might not get supplies for her dressing change.

On the good news front, her bed should be delivered about now and her prescription for medication was sent already so those can be picked up today or tomorrow to prepare for Megan to come home.

I never considered just how much effort will go into getting her home. After over 3 months I kinda just thought we go home, but the reality is that we have to do so many more things over the coming months. We still have all these follow up appointments, remodeling in the house, IEP meetings with school to get her back on track, outpatient rehab, … The list goes on and on and on and on. In some ways it was easier being in the hospital because her medications were brought to us and someone was responsible for getting her schedule built and all the other things. Now we have to do so much of this ourselves. The staff here are getting this first round of everything scheduled and that is a huge help, but I’m realizing now that the next several months to few years will probably include a LOT of medical visits that we have to stay on top of to make sure Megan stays healthy. I wish there was some kind of medical coordination assistant who would help with all of that and coordinate between all the visits to make sure we catch things like the neuro-ophthalmology and cardiology appointment issue that was caught in the meeting today. Maybe that exists. I just don’t know.

Prayer needs:

• General recovery
• All the last minute discharge details

Talitha cumi, just two more days!