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Why we fight?

From Kate:

This is why we fight. Getty is the most amazing gift that Mark and I could have ever asked for. She is our world. She is always happy and content. As she gets older we see glimpses of her special personality. She is silly and curious and she is just well, she is just Getty!

Good night sweet owl. Your mommy and daddy can’t wait to snuggle next to you.

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Getty Couldn’t Ask for a Better Mother

From Mark:

Thanks to our craptastic medical experience, we have not been able to go on any evening walks as a family in weeks. Since we got the diagnosis, those walks have been a big part of what holds us together. It has been a time to get out, relax, and just enjoy our family. When you have a child with a terminal disorder, every walk in the park really counts.

I know our walks together are particularly important to Kate. We were both floored by the SMA diagnosis, and yet Kate was a real trooper, immediately launching into the fight to do whatever she has to do for her little girl.

In order to do what was best for Getty, Kate wanted to stay home and provide for her daughter. However, Kate did not blindly decide to just stay home, she did extensive research into work and other benefits we may be able to use.

Unfortunately, the reality Kate found was that the best option for the family was for Kate to go back to work full time to maintain full income and health care benefits for Getty and to keep a roof over her head. It is a shame that the best option for a family with an infant with a terminal degenerative condition who is susceptible to illness is to send the child’s mother off to work full time in a school, which is a germ cesspool.

Despite the seeming injustice of it all, Kate gets up every day, takes care of Getty, gets ready for work, and heads out the door, voluntarily leaving her Little Owl behind. I cannot imagine the knot in her stomach every day she leaves the house.

When Kate is at work, I know she gives her students her all. She is a wonderful teacher and I know she would never compromise her own teaching standards due to a personal setback.

After a hard day, she is always quick to come home to be with Getty. Similar to her teaching style, she takes great care to provide Getty only her best.

When I wrap up my work day, and we have some time as a family, I see Kate feeding, bathing, changing, and loving little Getty. Kate reads her stories, sings her songs, and tries to teach her to say, “who, who, who.”

It is a beautiful sight to witness the bond between them. Getty may have SMA, but she may never know it with all the love, care, and attention showered upon her.

When we got the diagnosis, Kate and I quickly came to the conclusion that, for as long as we may have her, Getty deserves only the best; and when it comes to motherhood, Getty certainly has it.

We face a hard reality so far from what we imagined, but you handle it with grace and strength. Thank you, Kate, for all your love, work, dedication. I look forward to many more walks with you.


The McDonald’s of Health Care

From Mark:

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:

  1. Some major children’s hospitals use normal IV as standard procedure and not PPN;
  2. 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;
  3. 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:

  1. PPN creates a risk of severely burning flesh where the probability of that is not remote; and
  2. 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…

  1. PPN creates a risk of burning flesh. Well, Dr. Swoboda shot this argument down with the 10% dextrose PPN; and
  2. 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.