Our third GSD little guy has had diarrhea for a week. Our youngest little GSD one has had a stuffy nose. On Monday, when transitioning our youngest off of his feeding pump and on to eating from his bottle to control his blood sugar, he decided to throw up ALL over me. Great. Oh well, “I guess he’ll just have to be hooked up to his feeding pump for the day.” After having the boys’ two caregivers hook him up for me, I went upstairs to shower off the vomit.

Even on the continuous feed he couldn’t keep anything down. I came downstairs and immediately freaked out. Every time that maniacal little wheel on the pump would turn, so would his stomach. So, I paged Dr. Weinstein. In three minutes he called back and after explaining things, he instructed me to get him to the E.R. and start and I.V. at a particular rate. Of course, I couldn’t find his emergency letter. They’re normally filed carefully, but for some reason all four have disappeared. Nice.

Thankfully, I had two very wonderful caregivers who could take over feedings and schedules without a hitch. My sister Leslie caught the “There’s something weird at Jill’s house” vibe and showed up about five minutes after I had left. Jen had the older boys at the park across the street, and Danielle was busy mixing up the next cornstarch doses. All was calm and under control.

Fast forward 20 minutes as I race into the Emergency Room in Meridian. I think about cutting in front of a nice old lady, but figure it would be best if I at least pretend to be somewhat calm and sane. Finally, I can speak to the receptionist.

“My son has a rare metabolic disease called Glycogen Storage Disease. He’s throwing up and he needs an I.V. NOW.”

The nice girl surveys me and is prepared with her standard reply “Here is some paperwork. Have a seat and when it’s your turn…”

“No, I am not going to have a seat. My son is at risk for a hypoglycemic seizure, or even death if I can’t convince you to get him an I.V. now.” Yes, I am that melodramatic when under pressure. I can’t help it.

Out comes a very nice looking nurse who looks at how young I appear and says “This looks like your first little baby. I know throwing up can be scary, but he looks great. Dehydration doesn’t…”

At this point the baby smiles and coos. I flash a g-tube and repeat my speech. She takes us right back.

After doing my best in a somewhat panicked state to explain to the doctor on call exactly why we were here for “just throwing up” he smiles politely, says he’ll write up an order for an I.V. and leaves the room. I’m pretty sure he called our pediatrician right away, just to confirm that I wasn’t off my rocker. The I.V. is placed, the baby is playing happily on my lap, and we are admitted into the pediatric ward upstairs. I am once again as calm as I ever am with a sick kid.

I love St. Luke’s Meridian hospital. Well, as much as anyone can love a hospital. After being admitted, the nurse comes in with a warm welcome and asks how our family has been the past few months. Apparently she had treated one of our other sons when he had Rota Virus in March- and still remembers us! She even remembered that they put us in the same room as last time. Her C.N.A. and everyone else who came to treat our baby for the next 3 days he was there, remembered us. There was only one other baby in the unit and we had plenty of attention- which was good considering he had to have his blood sugar tested every half hour. Every time I turned around someone was asking if they could bring me something. A far cry from downtown Boise where the nurses are so busy I have to stand in the middle of the hallway until I can catch someone mid flight to reset the I.V. so his blood sugar won’t drop. They’re excellent nurses, just exceptionally busy.

My husband brought me something to eat about 4:00 which served as breakfast, lunch, and dinner. Thus ended Monday.

Tuesday my husband needed to be at meetings at work, so he brought me breakfast and we had a chance to speak with Dr. Joyce, our pediatrician. Later that day my mother-in-law swatted a few locusts by taking our oldest son to his therapy appointment in the same building our baby was staying. She came up to see me during his sessions. My sister Leslie also showed up to bring me lunch and work on a PowerPoint presentation for my oldest son’s school about GSD that I will be giving on Monday. My sister-in-law Bonnie also came back from Utah to help us with the boys for a semester, and she stopped by the hospital on her way to wish us well. She later told me that as she entered the hospital, that she recognized the number and said “Isn’t that where they were last time?” They laughed and nodded – there is now a joke about that being the family suite.

We were finally released Wednesday afternoon, although our baby is still on a continuous feed. That night we had a meeting with Genesis Service Dogs (ironically, also nicknamed GSD). They will be giving our oldest son a labradoodle puppy and will help us raise him to be trained to detect hypoglycemia. We will be meeting with their group once a week and doing some pretty hard core training at home. Huge responsibility, and extra expense, but they are very charitably donating a crate, feeding dish, etc. as well.

Thursday morning I had my wisdom teeth taken out. While at the doctor’s office, one of the boys’ caregivers called and reminded us about another therapy session that morning. One graciously took him and our second son, while our other caregiver stayed home with the other two boys (the baby still on a feeding pump). When I got home I was too swollen to take pain killers and was, as anyone who has had wisdom teeth removed will tell you, miserable. Danielle, the boys’ caregiver who stayed home, had recently had her wisdom teeth removed and knows all the tricks to make me as comfy as possible. At the worst point I heard a knock at the door, and I knew instinctively that it would my friend Jenny. She didn’t know any of this was happening, she just stopped by to see how things were going. She took care of bringing us dinner that night, and helping with kids since my husband had to work late again. Sister-in-law Bonnie was also here helping with the boys since I can’t bend over to give them their cornstarch… or pick them up… or talk and tell them not to do something stupid like dancing on the dinning room table…

My sister Leslie showed up last night and helped with dinner and starches as well as some more work on our PowerPoint presentation. Bonnie watched kids while we videoed how we “starch” the boys via their g-tubes. We also wanted to video tape replacing a g-tube, but I wasn’t feeling well and declined. All of a sudden, right before we put away the video camera, one dramatically fell out anyway, so we were granted the opportunity to tape me explaining how to replace a g-button, all the while, I was looking like a deranged chipmunk . Then when it was time to put the boys in bed, a breaker tripped and we lost power. How grateful I was that Bonnie happily tripped out to our garage, shoving around dusty suitcases to find the circuit breaker box and fix the problem.

One of my all time favorite caregivers also had to quit because her college schedule was too packed. Not unexpected, but depressing none the less. Thankfully Bonnie gave up a scholarship to Utah State University because she felt she needed to be here with us. Can you believe that??? Our Home Health agency hasn’t been nice to her in the past, but suddenly they’ve replaced the evil dragon boss, and hopefully things will be better managed now.

Today, my husband had volunteered himself as well as our older two boys to help clean the church house. I couldn’t take care of the two little ones by myself, so who showed up but Bonnie and my brother-in-law Andrew to help wrangle the boys.

In conclusion, I just want to thank everyone who has helped us, is still helping us, and who will continue to help us. We don’t mean to wear anyone out (but that regrettably happens, nevertheless), we’re just so grateful that whenever things seem dark and hopeless there is always an army ready to destroy the locusts that occasionally plague our family.

A few nights ago we were getting the kids bathed and ready for bed. The process started out normal enough with the typical herding of kids and trying to keep our 18 month out of anything he can think of including the toilet. My hands were pretty full so I had asked my oldest son to take off the pad around his g-button… thud. Not only did the pad come off but the g-button did as well. My son and I shared a slow-motion moment as we looked at the funny looking device that just fell out of his stomach and lay like a slain beast on the floor.

Of course we both quickly realized that this was a bad thing and commenced the procedure of panic and calling for mom to help. Mom had to cut off the conversation that she was having with one of her friends that stopped by and was soon running up the stairs to see what we were screaming about. Luckily she had prepared and had a back up Nutriport g-button close by, which I was able to promptly replace.
Moral of the story… keep extra supplies on hand! Extra g-buttons, lubricant jelly and adrenaline are a must.

As anyone who has read my other pages on this blog knows I am a huge fan of simplifying. The simplest way for our family to do and store cornstarch is in Snack sized Ziploc bags and 3oz bottles of prosobee. Some people prefer cups with a sealable lid, but that’s just too bulky with multiple GSD kids. The simplest way to bag cornstarch is to buy it in bulk. Once a month I special order two 25lb. bags of Argo cornstarch from Winco Foods. Every Tuesday morning we bag cornstarch for all the boys for the week. In the van I keep a 24 hour supply. (Their doses of cornstarch vary by time of day). In the 24 hour kit I also store three 60cc syringes, one bolus feed g-tube (they share in an emergency), one can of formula and a bottle of water. Keeping it in the car has already saved us in one instance when we just couldn’t get home in time for their next starch.

In our 72 hour kit for the family we have enough food and water to last our family a bare 72 hours. (canned food, etc.). We also keep enough doses of cornstarch and canned formula to last the full 72 hours, as well as several baby bottles for our infant, diapers and wipes. In addition we keep 8 feeding bags (our two youngest are still on continuous feeds at night), 6 syringes, 2 g-tubes, 12 I.V. sponge packets (we use these around their g-buttons), 1 roll of medical tape, a portable gram scale and a checklist that includes things we can’t keep in the kit such as feeding pumps, additional baby bottles, and medical notes from their GSD specialist.

This is a lot of stuff, but it is all necessary. We should probably keep changes of clothes, but it would simply take up too much room. All of these supplies are kept in two bags in our coat closet for easy accessabilty. Some people choose to use huge Rubbermaid Storage boxes and include tents and blankets/ sleeping bags, but if it were an emergency where we had to be bussed out (like Hurricaine Katrina victims) there is limited space, so I think packing light is the best way to go.

Also, the public pre-school that attends has been difficult lately. They simply do not understand the gravity of this disease, and the school nurse and psycologist were actually pushing to have our barely 5 year old weaned off his g-tube by the end of the year, and “Why don’t you have him in therapy so he can learn how to eat?” He can eat. We only use the tube for continuous feeds when necessary and cornstarch every four hours. I’ve been repeating this for 6 months, you’d think they would get it by now. Sorry if I sound bitter, but it’s hard enough dealing with just glycogen storage disease, trying to coordinate all of his special services when teachers and principals automatically assume I have no idea what I’m talking about can be even more exhausting- especailly considering I trust them with my son’s life everytime I put him on the bus.

Just before midnight on Saturday, my husband had to take him to the emergency room while I stayed home with the other three. I called ahead to see if they would prepare an I.V. so it would be ready for my son when they got there. The nurse I spoke with said she couldn’t do anything until they arrived, but fortunately another nurse overheard the conversation. She had been our son’s E.R. nurse a few weeks ago and understood that by the time he got there his blood sugar would probably be in the 55-65 range and dropping fast. When my husband walked through the door, he was immediately ushered back where this exceptional nurse had the D-10 I.V. ready. Sadly they had to place the I.V. in his head instead of his arm, but how grateful we are that she remembered us, and cared so much about our child’s well-being. They were later admitted to the hospital and will hopefully be released tonight or more likely tomorrow.