Ventilator Cart, ROHHAD on Mystery Diagnosis & Collecting Spit

New Ventilator Cart

It's been kind of a trusted friend, Josh's ventilator cart. We've been using a cart to haul around Josh's ventilator and medical supplies for some time. Below is a picture from 2009 of Josh at the doctor's office with his ventilator cart.

Back then, Josh had to be connected to his ventilator all the time. He originally had a bigger ventilator, the LTV 950, a bigger suction machine/bag, and we had to charge his external lithium batteries for his ventilator on a separate charger.

Josh has since upgraded to a more compact and lighter ventilator - the Trilogy 100. He recently got a new, smaller suction machine/bag. And his new ventilator has built in external batteries that charge while they are hooked up to the ventilator - so no need for the extra charger. We've been happy about having lighter and smaller components on the cart - but the cart has taken quite a beating over the years.

Here is a fairly recent picture of how his ventilator cart looked with the new Trilogy vent:



Well, yesterday, as the ventilator cart was being loaded onto the school bus on the wheelchair lift, the cart toppled over. A side rail broke, crippling the cart. Those particular type carts are no longer available at the Container Store where I got the last one. So, we had to say goodbye to our old friend, and I had to scramble to find a replacement of some kind last night, so Josh could go to school with all his gear today.

I found another type of shopping cart at Target - but it did not appear too sturdy. I bought it anyway and brought it home. Here is a picture of it:


But I also remembered my daughter had a baby stroller that had a base and infant car seat that separated - and she was no longer using it. I thought I remembered it seemed like it might make a nice base for a ventilator cart. She thought it might topple over too easily, but I asked her if I could try it out anyway, just in case. And she agreed. So, I brought both home last night and stayed up WAY too late working on putting a new cart together.


I ended up using the baby stroller base and added some wire baskets I'd put on the last cart. And this one seems to work out great (so far). We still need to add straps to the sides and make sure they are adjusted to fit the lift arm in our van. And we have to turn it backwards to get it in the van where the old cart went, because this handle area is longer than the old cart's. But at least it works and is plenty sturdy. And I think we've got the weight distributed nicely so it won't topple over.

Plus, this ventilator cart, has two cup holders and a small compartment for small articles near the handle and nice breaks on the back wheels. It also rides smoother than the last cart. So, the nurses and I are pretty pleased with the end result. I think Josh will like it too, although one nurse kidded with him that she was going to bring a baby doll to ride around in this cart since it was a baby stroller to begin with. He just laughed at that comment.



Josh spent much of the month of December into the first week of January fighting off some kind of sinus infection. He went through two different kinds of antibiotics. We are still not certain it is completely gone, but at least for now his temperatures have been nice and low and the secretions have not been terrible colors. He did require oxygen along with his ventilator for several hours last night - so not sure what that was about. Health-wise, we just take it all day by day and pray for the best.

MYSTERY DIAGNOSIS





Meanwhile, one of our internet friends who is also diagnosed with ROHHAD, Haven Fowler, made her premier on Mystery Diagnosis last night! Here is a link to a video about her episode: http://www.oprah.com/own-mystery-diagnosis/Mystery-Diagnosis-Trapped-Inside-Their-Bodies-trailer

Congratulations Haven (and to your mom & dad) on a great episode! You looked marvelous! And we hope it will inspire more doctors to learn about ROHHAD. We sure hope there are answers out there for this disorder soon.

GENETIC TESTING

Speaking of helping teach doctors more about the disorder.... we are participating in a genetic study into ROHHAD. We signed off all the papers with The Manton Center for Orphan Disease Research at Children's Hospital Boston.



They sent us saliva collection kits, so they could get our DNA. We spit in the cups and FedEx'ed everything back to them yesterday afternoon.



We hear there are 12 families signed up to participate so far. We sure hope this brings some good information to the doctors there. Maybe one day doctors will know what causes ROHHAD and how to cure it!