I slept right through it. I slept right through it because I stayed up all last night in the hospital with Hope. About 9PM last night I took her to the emergency room at Children’s Hospital. She had developed the Fifth Disease rash yesterday, as expected, but the cold had settled in her chest and by last night she sounded like a bike wheel with a playing card stuck in it. She wasn’t taking anything by the bottle and was running a low-grade fever. Hope was trying to cough but doesn’t have the strength.
Children with Prader Willi Syndrome are at an increased risk for respiratory problems. We have been a part of the 0-5year online message board for PWS families since Hope was born. Occasionally there are posts informing people that so-and-so is in the hospital, or much, much, much worse. In fact, I haven’t been on the site in a month because of one of the “much worse” posts. But nearly every thread I have had the guts to read through that ends tragically begins with something like, “it started as a cold…”
As I sat in the emergency room waiting area for 3 1/2 hours waiting for a bed, then 2 hours waiting to see a doctor, right up until I left at 2PM today I tried to convince myself that I had overreacted, that I was being overcautious, that I had put all of us through a very long, painful night for little or no reason.
“…it started as a cold.”
The nurses agreed I did the right thing, as did the doctor. Blood tests were ordered, as was a chest x-ray. The X-ray showed congestion but no pneumonia, “Yet,” said the doctor. The blood tests on the other hand…
I don’t mind telling you that I am more than a little ticked off right now with Mr. Jesus. Ten times last night — TEN #$&#@(@-in TIMES!!! they had to stick Hope. And these are not just “one-poke” jobs, but one-poke and then two or three minutes of digging around trying to find the vein, trying to get in the vein, trying to figure out why nothing is coming out of the vein, or going in. No less than five people tried getting blood out of and an IV into Hope last night. Even the doctor tried. On the third or fourth poke they managed to get some blood, but not enough to run half the tests the doctor ordered and they literally had to squeeze the blood from her vein a drop at a time. She’s got little bursted capillaries all over her arms, legs, and feet.
I had to hold it together, I didn’t want to fall to pieces and become the mother who needs to be handled with kid gloves. I have to hold it together to be an advocate, to be taken seriously. So every time they stick her and I help to hold her down while she squirms and cries (last night and all prior attempts), I have to find a way to be tough–so I get mad. Not at the nurses and doctors, they did their best, they gave up rather than insist at Hope’s expense that “they could get this,” they called for help, they scratched their heads and shrugged their shoulders, they got mad too.
Finally, around 6am I suggested putting the nasal-gastric tube in and giving her the pedia-lyte they wanted her take by bottle (which she was refusing) through the tube. After 12 oz in two hours through the NG-tube they finally managed to get an IV in. They were nice enough to hold off sending fluids through the IV so that they could do the lab draws the endocrinologist requested at our appointment three weeks ago. By the time they got the orders though, there was no blood in the vein…however that happens. They were able to give her IV fluids though and at around 11am she finally took a bottle of Pedia-lyte, then some peaches, then more Pedia-lyte. I came home a little ahead of Hope to try and get a head-start on a nap, but she and Tammy showed up just a few minutes behind me. Hope and I napped for about four hours.
Children with PWS are notoriously hard-sticks. The excess body fat, decreased muscle tissue, and generally small veins are just a recipe for disaster. I read all the time on the message boards of people having to delay surgeries because nobody can get the IV in. O.k., I get that, I accept that this is one of the physiological aspects of this disorder that we’re just going to have to deal with.
I also believe in something, someone, a little bigger than Prader-Willi Syndrome and I don’t think it should be too much to ask for a little break now and then. I don’t think I ask for much. I don’t pray that the PWS will disappear. I don’t ask “why me?” or “why her?” very often. I’ve tried very hard to see this as a gift, as an opportunity, as a way to live and not just profess my faith. Everyday I work on acceptance, I work to celebrate what is and not lament what is not. I try to do the right thing. I asked for one thing, “please God, just let them hit a vein.”
I didn’t get it (10th time’s the charm doesn’t count)…and I am pissed.
…and not just about missing sushi night.