***At this point I want to say how grateful I am that we are within a 100 mile vicinity of a world renown pediatric hospital. Primary's covers 5 states, yet we were within an hour drive of hundreds of pediatric specialists. Except for an occasional irritating "your child might die if you co-sleep with her" comment the staff in all three hospitals were incredible and amazing at what they did.
Anyways, a young resident (seriously, so young we thought she was a tech or something) came in to introduce herself and give us an idea for the day. She got our history, said she'd report to her attending, who'd report to the endocrinologist, and briefly checked Aleah while I clutched her and covered her ears to let her try to sleep. The team covering her came in and got more information, once again saying I shouldn't sleep with her. I was so frustrated at this point I was ready to throw things. Luckily the attending recognized my anger and backed off, getting to the medical issues. He said Dr. Murray, the pediatric endocrinologist on call that weekend, would look at her labs and charts and then visit with us. Meanwhile, Aleah would be kept on the D10 solution and they'd try to let the poor girl sleep after they finished a quick physical exam. We hung out in a daze while waiting for Dr. Murray, who spent quite a while out at the desk looking over Aleah's stuff thoroughly. I stayed in bed holding Aleah, afraid to move so she wouldn't wake up.
Dr. Murray came in, grabbed a stool, and started discussing the situation with us quietly so to not wake our poor, sleep deprived kid. She pointed out the obvious things we'd figured out. Aleah wasn't maintaining her blood glucose on her own; hence the IV drip. The night before they had let her drop in order to obtain labs during a hypoglycemic episode, which involved that horrible head prick consisting of them digging around with a needle trying to get past a valve... Anyways, Dr. Murray was leaning towards hyperinsulinism, but wanted to try a test in order to help confirm it.
The test administered is the glucagon stimulation test. Glucagon is a peptide hormone produced by the pancreas that, in effect, is the opposite of insulin. As where insulin is released to lower blood sugar glucagon helps raise it. (There are other hormones that help with raising blood sugar, but insulin is the only hormone that drops it.) Instead of giving Aleah insulin and then glucagon to see if her BS was raised appropriately, Dr. Murray wanted to wean her off of the glucose drip and wait for her levels to fall while maintaining her normal diet, administer the intravenous glucogon, then measure her blood glucose levels at 10 minutes, 20, and 30. Then the poor girl could eat and get back on the glucose. It was expected that a glycemic response of great than 30 mg/dL would be observed. Dr. Murray said that with most cases it goes way up with the glucagon. (Aleah's ultimately did, but only by 36 points. However, that fit the textbook diagnosis, so Dr. Murray called it a mild case.)
While we waited for Aleah's BS to fall, my sister Katie came to visit and brought us lunch. Aleah was up for some of the time, angry whenever her BS had to be checked but generally her usual self—just tired. We sent Casey off to the Ronald McDonald Room to get some sleep (they have "nap" beds) and after Katie left I walked around with Aleah, since she was disconnected from the IV at this point. She was content to just hang out in my arms, most likely grateful to get a change of scenery. Together we figured out the maze of the 3rd flood and looked at the different murals, artwork, and people we passed by. Casey was kicked out of his bed around 5 (rather rudely, apparently—he's still resentful about this) and we walked back to the room since his mom, Wendi, had kindly come out from Vernal to visit.
I waited anxiously for Aleah's BS to drop. Meanwhile, Casey went with his mom to get some food and bring stuff back to me. By this point I was exhausted and felt like a zombie. Aleah was somewhat sleepy but we kept getting interrupted as her sugar needed to be check and more staff came to argue about co-sleeping. A social worker figured out to not argue with me and kindly suggested I get some rest to help with the stress (I wasn't about to leave my baby with a stranger though so I wasn't sure how that was going to happen...). Finally, an attending who was a visiting associate or something came to talk to me. Aleah had barely fallen asleep again and I had just curled up with her tucked against me. I braced myself, expecting another "we don't let parents sleep with their children" speech. I closed my eyes in relief when she said, "Between you and me, I co-slept with my first child. Sometimes it's just the only option." She said she'd see about getting us a bigger bed where we'd be more comfortable and Aleah not so close to the edge (honestly, I wake up with her slightest move—she'd never roll off). I started crying in relief. She chatted some more and said she'd talk to the rest of the staff there that evening.
Finally able to relax, I slept for about 5 blissful minutes before Casey and Wendi got back. I think it was around 6 now. I managed to force myself to eat, beyond exhausted, while Aleah slept. At this point my lips were killing me, as my tears and runny nose from crying, along with dehydration, had created chapped monsters that leered at everyone with every word I spoke. I vaguely remember the spicy salad burning them but just didn't care. Wendi stayed for another few hours and Aleah's levels still hadn't dropped appropriately.
After Wendi left Casey suggested I get in the guest shower, which made me start crying because it sounded so good and meant I could get a few minutes to myself. The shower was right next to our room, so about halfway through rinsing my hair I heard a familiar cry. I rushed through, threw on clothes that got stuck on my wet limbs, and rushed into the room to see Aleah distressed about the blood pressure cuff. Again. I was so mad that they'd interrupted her sleep that I snapped at the aide to stop the cuff since Aleah's arm was turning red. She then tried to explain to me that it wasn't red because it hurt, but because she was moving around. I snapped back that I was once a tech for Intermountain and that of course a 6 month old is wiggling. She replied that she wouldn't try to explain anything else to me, all sassy-like, and said she'd try later. I told her we could do it when she was asleep, which I knew she would be soon since she hadn't had uninterrupted sleep for 48 hours now.
The phlebotomist came in again to prick her poor heel around 9 PM. Her BS was finally at a 41, low enough to administer the glucagon test. The nurses ordered the glucagon from the pharmacy while we tried to keep Aleah entertained. We got another BS, the glucagon was administered, and then Aleah's levels were checked for the next 45 minutes or so. They didn't skyrocket, like mentioned above, but came up high enough that Dr. Murray was willing to call it hyperinsulinism. They just didn't know what was causing it. That was what tomorrow was for.
Aleah was hooked back up to the glucose drip, ate, and we waited for her to go to sleep. Once she had that sugar in her she decided it was time to play. We realized she must not be used to having normal blood sugar, because while she acted pretty normal with low blood sugar—which suggested she was used to having a low base line, she was positively hyper on the glucose drip that kept her in the low 100s. I lost Casey to oblivion around 1AM, played with Aleah while sitting on the bed half out of it, and she finally went to sleep around 2AM. Besides an occasional IV or vitals check, we slept for an amazing 7 hours.
The pictures below are selfies we took while waiting for her to fall asleep.
No comments:
Post a Comment