The Locust Catchers

Posted on 18. Aug, 2007 by Jillian in Emergencies, Glycogen Storage Disease, Glycogen Storage Disease Type 1A, Hospitals, hypoglycemia

Whenever we seem plagued, there always seems to be a team of people ready to squash our personal locusts.

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.