The McDonald’s of Health Care
Instead of putting in a normal workday, I spent a good chunk of yet another day in a Kaiser fight.
As I anticipated, Kaiser denied our request for expedited review to go see Dr. Wang, an SMA expert at Stanford.
I also had a lengthy phone consult with our gastro. She was willing to walk me through her rationale for recommending against a PPN feed. Essentially, her reasons were as follows:
- Some major children’s hospitals use normal IV as standard procedure and not PPN;
- Based upon what these hospitals do, our gastro would need to see strong evidence to go against what she sees as the standard of care;
- Dr. Swoboda’s nutritional guidelines calling for PPN are only guidelines and are not a formal study sufficient to convince gastro to recommend PPN.
I asked, “Why NOT recommend PPN? What’s the risk?”
She responded with the following two reasons:
- PPN creates a risk of severely burning flesh where the probability of that is not remote; and
- PPN can cause an electrolyte imbalance, creating a need for frequent monitoring and blood draws to ensure constant proper blood chemistry.
I immediately emailed the gastro’s full reasoning to Dr. Swoboda’s office. Shortly thereafter, I got input from Dr. Swoboda herself. She wrote that for the past several years, she has routinely used PPN which contains no more than 10% dextrose and, thus, will not cause burning flesh. Increased survival using her proactive protocols has been statistically significant compared to other groups. She’s in the process of publishing on it, but until her work is in print, it will be difficult to consider it “evidence” unfortunately.
In sum, what I’m gathering from our gastro is that she recommends against PPN simply because other people are doing it that way. Looking again at the arguments against PPN we see…
- PPN creates a risk of burning flesh. Well, Dr. Swoboda shot this argument down with the 10% dextrose PPN; and
- PPN can cause need for frequent monitoring and blood draws to ensure constant proper blood chemistry. In my mind, this argument reminds me of when I was a kid doing math homework, whining, “I don’t waaaannnnnnaaaaaa coz it’s toooooooo haaaaaarrrrrrd!”
I forwarded Dr. Swoboda’s rebuttal to our gastro. I also wrote another email to Dr. Schroth at University of Wisconsin’s American Family Children’s Hospital, asking for help.
I spoke to one of the SMA dads, who is well-versed in all of this stuff. He was very apologetic that we had to go through all this and very confident in his belief that our gastro was not giving us the best possible care. He is certain that if we could just get help from Dr. Schroth, we would be so much better off. He told our story to Dr. Schroth recently, and she said she would be willing to help us. That tells me she disagrees with our Kaiser team.
All I know is that the entire SMA community praises Dr. Schroth to no end. Her knowledge and expertise with SMA is considered top notch. Her word on SMA is golden.
This SMA dad also told us that SMA kids who don’t go directly on BiPAP post-op tend to expend all their energy trying to breathe when they should be simply trying to recover post-op. As a result, these kids may look just fine when they are recovering in the hospital, but once they get home, they have a serious crash and may never regain their previous strength.
Kate spoke to a local SMA mom today who told us her child did the G-Tube/Nissen procedure, and her pulmo did not put her child on BiPAP post-op. The child went home and crashed soon after. She never regained her prior strength and passed away not too much longer after that. She believes the crash was caused by the failure to go on BiPAP post-op. Who was her pulmo? The same one we have.
Kate also mentioned to this SMA mom that we met our pediatric surgeon who is scheduled to do Getty’s G-tube/Nissen. When we were in his office, we asked him a lot of questions about the procedure and he was irritated that we were challenging his ideas. We asked him how many SMA G-Tube/Nissen procedures he has done. He told us he had done a handful in the past decade, and he told us about the last one he did. It turns out the last one he said he did was the case of the SMA mom Kate was talking to today. That SMA mom told us that our surgeon was NOT the surgeon doing the procedure on her child and that their surgeon was the OTHER Kaiser surgeon. In other words, our surgeon was apparently taking credit for some other surgeon’s work. We wonder how many other SMA G-Tubes he claims to have done were really his or if he just happened to be in the same room as whoever was actually doing the surgery.
Kate and I are getting the feeling Kaiser is the McDonald’s of health care. If you want a Bic Mac and fries, Kaiser will fill you up just fine. If you need extra pickles, you run the risk they’ll screw up your entire order. If you need special service and a quality product, go somewhere else.
I’ve never been to Wisconsin. Maybe it’s nice this time of year.
It’s SOOOO frustrating reading that you guys are going through the same battles that so many of us have. We found the most effective thing was having the doctor call Dr. Schroth directly and have her consult as to why and etc. We were in a really bad situation and we owe Stella’s life to her expertise. We live in Iowa . . . weather? It’s cooling off but beautiful this time of year . . until it snows alot! 🙂
We’re trying to get a consult between Dr. Schroth and Kaiser. Fingers crossed!
So wishing you guys did not have to go through all of this. You are fighting for your daughter’s life and if those docs were in your shoes don’t you think they would be researching and looking for the BEST possible care for their child?
You are giving Getty a chance to live and live a wonderful happy life as comfortable as possible. YES-it is possible!!! I can tell you so many stories- even today I’m FIGHTING for my daughter who if you remember is 13 years old and has SMA type1. Way back in the beginning of our our own journey there was not nearly as much info out there on SMA and only one SMA expert. Stick your ground and know you are doing the right thing. I’m here for you guys if you ever want to chat.
HUGS to Getty and her wonderful parents!
Keep up the fight for the proper care for the Owl, guys; I’ve got a rare orthopedic disorder that is virtually unheard of, and finding doctors who know more than a paragraph in a book about it is a wonderful thing. I’ve even had experiences where a couple of them didn’t believe I had what I have, after it took the experts five years to pin it down when I was a child!
Get with the docs who know what they’re doing. If you can’t travel to them, push for the docs on the ground to LISTEN TO THEM.
And hugs to all of you.
Rachel (who has been lurking all this time, from the Straight Dope)