Primary Children's-Day 1

So after 3 hours of sleep for me and 1 for Casey, the doctors started flooding in. Since Primary's is a teaching hospital there are interns, residents, chief residents, fellows, attendings, medical students, and specialists.

***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.

Hyperinsulinism-Saturday night/Sunday morning

Aleah's blood sugar was checked at UVMC at 3 AM, about 30 minutes after I'd fallen asleep (holding Aleah and curled up in the giant crib with her), and was at a 43. A recheck brought it up to a whopping 47. Not critical, but considering she'd had 18 mL of glucose shot into her IV and was on 30 mL of continuous D10 (a dextrose solution) the pediatrician was nervous. I drifted off while the nurse went to report to the doctor. Dr. Sekona (the awesome hospitalist pediatrician) came in and said she was going to call PICU (Primary Children's Pediatric Intensive Care Unit) to see if they could take Aleah. She said she had planned on waiting until tomorrow but that Aleah had had too many ups and downs that evening, even on the drip, that she wanted her to be with the specialists. She also ordered some more labs drawn before we left.

I called Casey, who had gotten home, done some laundry, and been in bed for about 10 minutes, to tell him they wanted to transfer her. He replied he'd be on his way and the nurses came in to draw some more blood from poor Aleah's head. It was argued that there are fewer nerves on the scalp and that they could see the veins better, but I think it was a much more horrible experience for her. (PCMC drew from her arm and had a way easier time.) Dr. Sekona came in to say PICU was sending the helicopter since it was faster. At this point Aleah was being prepped to have blood drawn and she knew what was happening and lost it again. While Aleah was screaming, I was bawling, and the nurses were scooping blood off of her head so as to not have to poke her again. One of the nurses came back in and said the helicopter was 20 minutes out. I got Aleah settled down as much as possible and called Casey, asking where he was at. He said he was close and I urged him to hurry, explaining that they were sending a helicopter instead. I also called my mom, who asked if she should come up to Primary's (only 15 minutes away). I didn't know how long it would take Casey to get there and knew I didn't want to be alone, so I said yes.

Casey walked in with the Life Flight crew, which consisted of two amazing nurses and a pilot. I'd barely gotten Aleah quieted when they started on her vitals. Meanwhile, they were trying to ask us more about her history and what had happened. We were almost yelling over her cries while one of the hospital nurses helped Casey start to pack. The male nurse (Rob?) asked if I was going with them and I firmly replied "yes." He then mentioned he should probably ask the pilot, Scott, who said I could come. (Dr. Sekona had told me earlier that I would most likely be able to go since Aleah didn't need a respiratory therapist, therefore clearing up a seat/weight for me.)

They buckled Aleah down onto the huge stretcher, bundling her in blankets and sitting her up at a slight incline. I remember feeling overwhelmed seeing her tiny body lying on a stretcher meant for adults, only able to stroke her head. Fortunately she thought this was interesting and quieted down once they started moving, looking around with her big blue eyes while giving little gasps to get her breath back. I tried to be right next to her, cutting off other staff, but didn't really care. I just needed her to know I would not leave her.

We raced through halls, pushed through doorways, rode elevators, and rushed outside to climb a ramp. It was cold but I noticed Casey was shaking rather violently. I had the thought that it wasn't THAT cold but didn't realize until later that it was his emotions and adrenaline affecting him. We went past one helicopter which confused me until I noticed another one. They lifted her in and showed me where I was to sit (in front). I gave Casey a quick hug and climbed in, upset that I couldn't sit by her but glad I could be there at all. The pilot showed me how to buckle in, how to unbuckle, and how to open the door in case I needed to. We sat on the landing for about 5 minutes while the helicopter started up, lists being checked off, all that. I heard Aleah cry once, which I later realized was them checking her sugar again, and had to crane my neck around in order to see her. She quickly fell asleep and we were airborne.

I had been given some headphones but quickly understood I wasn't to be included in the conversation so I tried to relax during the terrifying experience of having my sick daughter Life Flighted. The roar of the chopper quickly escalated my headache to a near migraine and the lack of sleep, food, and water created a mild nausea (not so mild on the way down). In between identifying areas in the dark (like Lowe's in Orem and the state prison), I tried to interpret what the screen meant and frequently craned my head around like an owl to peak at my daughter. She was peacefully asleep with a blanket over her ears and her vitals normal.

We were in the air for about 20-25 minutes at which point I was more than ready to be done. I think I could have enjoyed the helicopter ride had it been in the right circumstances but... it wasn't. We landed with much vibrating and a crew came to meet us. I followed the rest of the crew's example and unbuckled myself, opened the door, and tried to check on Aleah. One of the ground crew member's pulled me back and received a frustrated glare from me. Aleah had woken up at this point and was still interested in her surroundings.

 I don't even remember going from the roof into the building; I just knew there was no way I could find my own way through the maze of halls. At first we were told we'd be on the 4th floor but then went to the 3rd. I had on old high school sweats Casey had grabbed for me earlier and one of the crew members remarked on them. Turns out her kid goes to Bountiful, so naturally we're mortal enemies and I almost felt embarrassed until I realized my KID HAD JUST BEEN LIFE FLIGHTED. I followed the stretcher through the halls, trying to be as close as possible to my baby, until we arrived in a horribly small room with a small crib and couch/bed. I had the distant thought that I'd make Casey switch the position of the bed and crib because I was going to have to sleep with my baby. They unstrapped Aleah and I quickly grabbed her while they tried to get more vitals (she really hates blood pressure cuffs at this point). I quickly got annoyed with the tech who was trying to explain stuff to me that I already knew. I'm not a very gracious person with a headache and exhaustion. I tried to call Casey but couldn't get a signal and didn't have time to connect to WiFi yet, so I was grateful when they showed my mom in. She hugged me and tried to help me comfort Aleah. They realized her IV was bad as it was leaking and they couldn't flush it. She hated it being touched, but it was next to a valve so that's understandable.

Knowing they had to do another IV and more labs I tried to get her as settled as possible. The IV team came in and couldn't get it to stay. They poked each of her hands and one on her foot. My mom pushed for another team whom they called. They got it on the first try, in her other foot. I remember holding Aleah down, feeling like there wasn't any more in me to cry, when I realized she'd stopped struggling and was just sobbing. That scared me more than anything, watching her lie there limp and wailing. My mom had to leave when the new IV team came, as she was sobbing with her. It wasn't until they got the IV in that I started crying again, so relieved that she could be done for a bit. I wrapped her up and tried to quiet her. We were both so exhausted. Casey came in right as they were getting the IV.

Casey switched the bed and crib while the staff was out of the room. I laid down with Aleah, holding her while she sniffled and collapsed into exhaustion, ready to bite the head off of anyone who made the slightest noise that might wake her up. At this point my headache was a migraine and I could barely see. And now I apologize to my mom (again) for snapping at her. My mom asked the staff for an ice pack, that turned out to be a worthless cool pack, and we decided my mom should go home to sleep in case I needed her to come back that afternoon or evening. The new tech (we got there just before shift change) came in to see if I needed anything and noticed our rearrangement. I explained she wouldn't sleep without me and he wisely left it alone, just reported it to the nurse, which turned out to be another big deal. I tried to drift off with my headache while Casey sat in a horrible rocking chair thing.

Eventually a nurse came in to say that it was against policy to let parents sleep with their infants under a year, or something like that. I explained that 1) She won't sleep in a crib or without someone, 2) She's completely exhausted and needs to sleep, which means I will hold her so she can sleep, 3) She nurses every 1-2 hours (which only made sense later since we know her blood sugar couldn't be maintained, 4) She's been through too much trauma right now to even try a crib, 5) Yes, I know the SIDS risks and I do take them seriously, and 6) Basically, you're not going to win this argument right now so bug off. The nurse knew she was in over her head so she reported to her charge nurse, who reported to doctors, who also got the same reply, who later sent in a social worker (I was not very gracious at that point), and that continued pretty much our entire stay until Monday night which I'll tell about later.

Anyways, at some point an old friend, Lindsey, stopped in after her shift from around the corner to say hi and inquire on what was going on (she had seen a post on FB or something). I vaguely remember talking to her and explaining what I could from an awkward horrizontal position, hoping she wouldn't judge me silently for my condition after not seeing me for about 3 years. Aleah and I got about three blissful hours of sleep. Aleah at some point earlier was hooked up to the glucose again. Around 9ish a resident came in to give me the SIDS talk, got shut down, came back with an attending who ultimately said they weren't the parents and I got to make the decision, agreeing with my statement that sleep is vital to live as well. Eventually I realized the residents and interns were way more concerned about the co-sleeping than the attendings, which made it easier to dismiss in my mind. I stayed annoyed, though, and still am.

At this point I realized I was probably done getting sleep but knew Casey needed to get some so sent him out to the truck to try. He got about an hour. Around 10 the day started getting hellish again.