We finally got a call from someone with the surgeon in Houston who will perform the operation to implant diaphragmatic (breathing) pacemakers into Joshua. He wants to see us in his office for a pre-surgery meeting.
We need to fill out all the necessary forms and he has to do his official screening so that insurance will pay for the devices as well as the surgery. They explained to us that this device - unlike most that are implanted into someone - must be paid for before the operation. They cost $65,000 from the manufacturer. The hospital cannot get them until insurance (or we) pay for them in full. Then, of course, insurance would have to pay for the surgery itself - but that is not the unusual part. Anyway, it could take a month or more just to get approval for the payment.
They want to do the surgery(ies) as soon as possible after school is out for the summer. That means we need to get into their office ASAP. This doctor only sees patient in-clinic on Thursdays. So, we set the appointment for Thursday, April 16th.
I still need to call Medicaid Transportation to get assistance with traveling expenses. But, Joshua's afternoon nurse has agreed to go with us, since it is a day-trip. That is great because on our last trip, Joshua's ventilator was giving me problems and I could not look at it because I was caught in Houston traffic - not a good combination.
I got the chance this morning to talk to the mother of a CCHS child who has had her pacers for about 5 years now. She talked to me about her decision to have her daughter paced and how difficult the surgery was on her - well, actually the harder part was the month long recovery from surgery. But she says it was all well worth it in the end because of the quality of life her daughter has since being freed of her trach and ventilator. She also did not understand why any doctor would say Josh would still need his trach or vent after getting the pacers up and running, or why they would think you have to build up into using them for certain numbers of hours. She said that was never an issue with her daughter. She had so much other good advice to share. We talked for over an hour on the phone. It was great stuff to help me come up with questions for the doctor when we go April 16th.
Our house has been on the market here now for about a month. And before this week, we had only had one showing ~ and no feedback on it. But then, there was a showing yesterday, another one was set up for today, so Josh and I had to leave as soon as he got home from school. And now, there is another showing scheduled for Sunday morning. That is encouraging to finally have a bit more interest showing in the house. Josh is excited and hopes the house sells quickly. He has his eye on one house in particular that is near his Aunt Amanda's. The formal dining room in that house looked to him to be the perfect place to put a pool table - not that we have one or anything :)
Busy Day today
We had a very busy day today. After school, since there was a showing scheduled, Joshua's afternoon nurse invited us to come hang out at her house.
We rented Marley and Me and took it over there to watch it. Then we came home and got ready to go watch a musical play at our church called "I Am."
It's a dramatic re-enactment of some of the miracles of Jesus along with his death burial and resurrection. It was very moving. Afterwards, we went out to eat at a great Bar-B-Cue place called Harmon's where a Christian Band was playing, so we got to listen to some great music, too. By the time we got home, it was about 9:30. Josh sacked out quickly on the couch soon afterwards. I had a time getting him to wake up for his growth hormone shot and to get ready for bed.
A particularly stupid Ferrari owner
I have to end this blog by sharing an incredible story I heard tonight about a drunk guy driving a 2000 model Ferrari who ended up stuck on some train tracks.... take a listen:
Stupid 911 Call as Train Hits Ferrari - Watch more Funny Videos