Miya is a Super Star!! I don't know how she does it, but she manages to deal with everything that's thrown at her with a smile on her face. That poor child hadn't had anything to eat for NINE HOURS when it finally came for her to be anesthetized. She hadn't had a nap (except for a brief hour or so on the way to the hospital) and she didn't cry. She didn't complain. She happily played in the ward's play area, or in her bed.
Chris held her on his lap when it came for her to be gassed, and I knelt in front of her. She was crying and I got weak in the joints and felt a little sick. I didn't know if I was going to have to run from the room or not. Poor Miya was wiggling and crying and then went limp. I feel as though I can't describe it in words. We said our goodbyes as she laid motionless on the stretcher which broke Chris' and my heart. How do you leave your child so helpless and vulnerable in another's care?
We went to the hospital restaurant to grab a drink and something to eat and then headed back to the CT scan area and waited for her to wake up. We hadn't been there long when we could hear Miya's dramatic cries coming from the recovery room. The anaesthetist (or anesthesiologist, as they are called in North America) told us that Miya did really well and she had a good airway, considering she has Hurler's. Great news!!
Sitting On Daddy's Knee After Coming Up To The Ward From Recovery. Still A Bit Grumpy.
Poor Miya drank 14oz of milk and ate a banana and some Cheerios when we got back to the ward. She played with her stuffed toys for a while before settling down for a nap. The pre-meds for the ERT came around 1800hrs and the infusion was hooked up close to 1900hrs. She slept through most of the infusion, but woke up for the flush portion of it. (When the bag is finished, there's about 15-20ml left in the line. The nurses flush this through with saline solution. Therefore called "the flush".)
ERT No.18 (There's a sock on her left hand so she won't pick at the canula)
We don't know the results of the CT scan, but I'm sure we'll hear something today if there's somthing wrong. I am also going to phone the BMT ward to tell them that the anesthetic procedure went well and to schedule the gastrostemy if that's what Miya's medical team feel is best.
Now comes the part I'm a little peeved about. This happens all the time (unfortunately) and I had a really difficult time dealing with it.
Parents in wards tend to congregate. They ask what each other's child is in the hospital for and listen politely while the other parent explains. At least, I listen politely. Two mums last night did not. First off, when these two mums asked me what Miya was in for, and I tried to answer, they kept cutting me off with information about their children. Fine. If you want to talk about your kids, I'm down with that. Just wait until I've answered your question about my kid!! If you didn't want to know, why did you ask?? Secondly, and the reason why I'm so peeved, I HATE HATE HATE trying to explain MPS to people who have never heard of it before. They usually don't understand how bad it is ("What's the big deal,? It's just a missing enzyme. What harm can that do?") and when I try to explain the severity of it, people think I'm trying to make my kid seem sicker than everyone else's kid!! Kind of a munchausen by proxy situation, if you will.
MPS is bad, right? I don't mean to sound like Miya's situation is worse than everyone else's but sometimes, it is. Sometime's, other kids are worse off. When people ask me about MPS and Hurler's, I tell them what it is. I don't sugar-coat it. This whole situation makes me wonder what I could do to bring more awareness to the disease.
That is all.
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