Getty and I are sitting here chatting and playing with the birthday balloons she got from the Phelps family. She loves them. We have a little helium tank from the party store, so I can keep them filled for days. They are tied to Getty’s wrist, and she loves moving them around.
Meanwhile, I’m trying to find out what we need in terms of equipment and supplies. We are applying for assistance and the person in charge over there asked us to tell them everything we need. We know SMA kids need plenty of equipment in general, so, pardon me if I think it’s a bit crazy to ask a newly diagnosed SMA family to provide a comprehensive list of everything we expect to need.
We don’t know.
I am asking the SMA community for help on yet another battle. There’s no other way to say it but, “This sucks.”
I always thought if someone gets sick, you just go to the doctor and they tell you what you should do. You would think the potential sources of equipment assistance would be readily available.
This whole thing is just one exhausting battle after another.
Our Kaiser gastro never told us we should be getting a G-Tube ASAP. The only reason we started having that discussion with her is that it happened to come up in passing in a conversation I was having with another SMA parent. I wrote the gastro an email asking about it, and she said it was recommended ASAP but she didn’t want to overwhelm us by bringing it up in our first meeting with her.
The problem is our next gastro appointment isn’t scheduled for another 2 months and the G-Tube procedure likely wouldn’t be scheduled for another month on top of that. So, our gastro was apparently OK with a three month delay on a procedure that should be done ASAP.
Call me crazy, but when the average SMA1 baby loses swallow function on average by age 6 months, and our child is 6 months old, only gets weaker with each passing day, and the average life expectancy is only 2 years … you don’t screw around for 3 months with procedures that are recommended to be done ASAP!
Further, our gastro and our Kaiser surgeon don’t agree on the Nissen recommendation. Now, on top of everything else, we are in a position of having to gain medical expertise on the Nissen procedure just so we can attempt to resolve conflicting recommendations between two of our doctors.
Surgical Nutrition Battle
In the process of learning about Nissen, the SMA community told me normal IV fluids (IVF) are not recommended for SMA babies during surgical procedures, and that we should fight to get her something called TPN instead of normal IVF. Apparently, when SMA babies fast for surgery and go without sufficient fuel in their system for more than 4 hours, they lose muscle mass that they will never get back. They are already weak, and any loss of muscle mass is a bad thing. So SMA babies apparently need TPN instead of IVF during the G-Tube/Nissen procedure.
I wrote our gastro about it, and she says IVF should be fine. Now we have to resolve the medical issue of the appropriate SMA nutrition during surgery. I wrote an email to Dr. Schroth, an SMA expert physician in Wisconsin to try to get current recommendations for SMA surgical nutrition because I may need to bash our gastro over the head with a medical opinion from a real SMA expert.
Social Work Battle
As I mentioned, we are also trying to get approved for government and private benefits to assist us with some of the anticipated medical equipment needs. We have a social worker through Kaiser who is supposed to be an expert at this sort of thing.
We applied for assistance though one state agency, but the agency denied us benefits. We happened to bring it up to another SMA family, and they said plenty of SMA families get that government benefit and the agency should not have denied us. In other words, our Kaiser social worker seems incompetent as well.
Everything we are trying to do so far is a fight, and we’re just getting started as we shift from “meeting the doctors” to actually trying to implement care. We have heard from the SMA community that we need to be educated, we will soon know more about our child’s care than our doctors, and we need to be advocates for our child. We are learning just how true it is.