How StarchWars was born- or at least the events leading up to it

Posted on 03. Feb, 2008 by Jillian in Glycogen Storage Disease

I’m a firm believer that if you’re depressed or feeling pathetic and “why me” you should serve others and you will feel better. That was definitely me last year, but I had never before been in a situation where I felt I really couldn’t help anyone else. I couldn’t even help myself. I was completely dependant on others for providing the very basics for my family. That is what finally broke me, and what made me humble and desperate enough to start StarchWars with my husband. To be clear, Ben had been trying to get me to do this for months, for all the right reasons. I’m just a little stubborn , and didn’t want to.

Last winter was bad. We were expecting our fourth (very unexpected) child. We live about 15 minutes from a nice hospital in Meridian, Idaho. It does not have an NICU, but the only hospital in the area that does (St. Luke’s- Boise) is another 15-45 minutes away depending on the weather. Since I only had 20 minutes to spare after getting to the hospital and giving birth the year before, we were really shooting for the closest safe hospital. We didn’t know at the time if he would have GSD, but the odds were certainly in our favor that he would not. That is also why our new family motto is “never trust the odds”.

Our pediatrician at the time originally had his office at the Meridian hospital, but had since moved down the street. However, he did not have privileges at St. Luke’s- Meridian. So, after we spoke with the neonatologist there- and he’d spoken to Dr. Weinstein- everyone except our pediatrician felt that delivering in Meridian would at least be safe for a GSD baby, if not the best decision. I knew the pediatrician wasn’t happy, but I didn’t realize he’d taken it personally.

Flash forward several weeks. I think it was about 10-15 minutes after Dallin was born his blood sugar was down to 45 and we were fairly certain that he had GSD, although obviously we sent his blood for DNA testing at Duke University. Since we’d been through the whole NICU bit only 12 months earlier we were pretty confident that staying in the special care unit would be adequate. We’ve placed more NG tubes in the recent past than most nurses we know. We stayed for a few days, followed by the extraordinary neonatologist, and once a firm plan for keeping blood sugar levels as normal as possible was in place we went home. The follow up appointment with our pediatrician was normal- or so I thought.

After Dallin’s g-tube surgery when he was a month old (choirs of angels sang that day, let me tell ya!) he did much better but always seemed in pain. A few weeks later our third son, Jonny, was hospitalized for the flu because we couldn’t keep even continuous feeds down him. I’d caught a cold and lost my voice, so Ben took him in. When my husband got to the E.R. around 2 am they placed the I.V. and said they’d have to admit him and transfer him to the sister hospital in Boise (the one that was another 15-45 minutes away) where our pediatrician had privileges. The problem was 1. We had three more GSD kids at home who may or may not catch the flu and need to be hospitalized 2. The pediatrician on-call wasn’t even ours and 3. The pediatrician on call was our first pediatrician whom we have absolutely no confidence in whatsoever. So, my husband calmly asked if they could simply be admitted there. Not a problem. That was a Saturday. They came home Sunday night, though still on a feeding pump.

Monday morning I walked my son down our driveway to the bus and slipped on the ice then passed out briefly. Next thing I knew the nice 70 year old bus driver was trying to help me into the house. If natural child birth is a 10, I’d consider that pain an 8- 8 ½ . So, after I had the bus driver leave me on the floor by the front door, I begged my then 3 year old son Ethan to find me the phone. After what seemed like an eternity of listening to the two babies still on continuous feeds in their cribs scream, he found it. I called my husband, my sister, and a few others. Long story short, my sister watched the kids until our home health aide was able to get there. We took an ambulance to the E.R. and I had fractured two vertebrae. Ironically we were in the same E.R. room that Jonny had been in 30 hours earlier- the baby wipes he’d used were still there. They sent me home with LOTS of morphine and said “Good luck. Follow up with a doctor in a couple weeks, you’ll probably need surgery.” Nice.

Also during this time Dallin had a HUGE belly button. I know that sounds like a strange thing to worry about, but it seemed to be hurting him, it was turning greenish purple (is that a color?), and I was worried about it. I had a well- check appointment scheduled for all four boys that Tuesday so I’d put off taking him in for a week or two. Wednesday afternoon, while still very medicated, the school nurse called to tell me my son could no longer attend pre-school until he had his immunizations updated.

Thursday morning I remembered that I’d missed the appointment and called to reschedule expecting them to be understanding since I’d never even been late before. Instead the secretary said “Ummm, it looks like their appointments were cancelled yesterday because they are no longer patients here.”

“Huh?”

“Their status here was terminated. I’m sorry, that’s all I know”.

I e-mailed my service coordinator who forwarded the termination letter. Apparently doctors don’t like it when you “refuse transportation” to their hospitals- even if they won’t personally be seeing your child.

We tried speaking directly with the doctor, but he flatly refused to take our calls- even when I explained my concerns about Dallin’s belly-button looking like the “done button” on a Thanksgiving turkey to the nurse.

My husband spent that evening after work trying to find a quick care- it took 4 hours to get Mark shots. At the time I still had two babies that couldn’t tolerate cornstarch, so they needed feedings every 1 ½ – 2 hours and I was still in a considerable amount of pain. The pain killers made me so loopy that I couldn’t use them and still trust myself to be on top of things enough. Those may have been the longest four hours of my life.

The next day the nurse called again and said that it was great that I’d gotten his immunization records, but, since I no longer had a pediatrician, she wasn’t allowed to administer Mark’s cornstarch. I explained the situation and she retorted “It’s the law.” So, I loaded up on all my medication, we loaded up the van with all three kids, asked the then new home health aide (who wasn’t trained in g-tubes) to drive me to the school and wait in the car with the kids while I went in to do cornstarch. I hobbled into the school like the hunchback of Notre dame through the back entrance because it was closer to his classroom and I wasn’t sure if I’d have to crawl to get back out. At this point I wasn’t supposed to be walking anywhere except to the bathroom. So, the nurse and teachers stood and watched me while I did his cornstarch with my eyes watering. They also made sure to mention, kindly, that next time I should really use the office entrance and make sure to sign in to get a sticker so people know I’m a parent at the school.

I spent the rest of that day, when I was conscious, calling every physician within a 45 minute drive time of my house. NONE of them would accept my children after they heard that I had four boys with Glycogen Storage Disease type 1a.  

By this time Dallin was shrieking with pain frequently and I knew something had to be wrong. I was able to get an appointment with our gastroenterologist during his lunch break on Monday after explaining my concerns to an especially understanding secretary.

It turns out that Dallin’s belly button just never healed after birth. So, part of his intestines was sticking out of his stomach into his belly button. Apparently that kinda hurts. The big problem with that is that the belly button can close up- with the intestines still sticking out. That means that food can no longer be digested- it just gets stuck. That’s bad- especially with a metabolic disease where they can’t go for very long without a supply of glucose. So, he sent me home with a quarter taped across his belly button and instructions to drive to the nearest hospital for emergency surgery if at any point I couldn’t shove the intestines back through the belly button hole. That was a bad day. But, our gastroenterologist promised to make a few phone calls to see if he could get us into a pediatrician.

For your sake I’ll sum up the rest of that month almost a year ago. I had to drag myself to Mark’s school to do his cornstarch for one week, and then Dr. Weinstein graciously offered to be the presiding physician (for lack of the correct terminology) at which point the nurse could again take care of his cornstarch. After two more runs through the phone book I still couldn’t find a pediatrician. Three of our “specialists” made phone calls for us and we were finally accepted by an excellent pediatrician that had privileges at the hospital we prefer- although that took several weeks.

I very thankfully did not end up needing surgery, and after a couple weeks was off morphine, after three I was off of the “lesser” prescription drugs, and am really close to back to normal now.

Dallin’s belly-button healed after several more weeks, and thankfully, we’ll never know what could have happened if we hadn’t been able to see a doctor to know what to do and look for.

There were more bad things, but those were the big ones. Here are the many good things. I have never felt so loved by acquaintances before in my life. Immediately after finding out what happened to me, my friend Jenny (the one that comes up with good GSD friendly recipes on the blog) called in the Calvary so to speak. She personally brought us dinner that night and I think the rest of that week (sorry Jenny, I was so loopy I can’t really remember). Then she sent out a sign up sheet around to members at our church who quickly signed up to bring us dinners for the next two weeks straight- even people I had never formally met. My friend Kristen just happened to stop by with flowers for me the day Mark had to get his shots, and she stayed most of the time to help me, even though she had other obligations that night and was going through a difficult time herself. At the time we were trying to get our rental property ready to sell. Those same people signed up to spend their Saturday repainting it and getting it ready.

Every day for two weeks straight something would happen to bring me to tears and to my knees. Literally within minutes of that happening, EVERY time, it was guaranteed that Jenny would be walking up my driveway. “I just felt like I should come and check on you. Here’s lasagna.” (my personal favorite). I feel so privileged to have had such a powerful experience. Ben and I are so much stronger now that we know that we can live through that- and all four boys getting the Rota Virus a couple weeks later (those were our first blog posts). I can say now that I more fully understand the phrase “tender mercies of the Lord”. Whenever things felt like too much, someone would show us small, simple, mercy. Our family had to go through all of these situations. Some of our worries turned out to be “nothing” and others were just the beginning of greater challenges. All of them made us realize how blessed we are to have such wonderful family and friends that show us such love and support.

Ben had tried to talk me into blogging many times before. It wasn’t until all of this happened that I realized that I really did have the time, and that it could be beneficial for others to hear our stories as well as healing for us. Thank you for taking the time to read.

.