NIH Natural Histories Study - Day 2

We headed into today rather nervous about what the day would bring, given Teddy's reaction to everything yesterday. Our scheduled started with 7:30 a.m. fasting labs, but our day started when Teddy woke up at 4:40 a.m. (Although, to be honest, I'm not sure how much he slept in between kicking me, almost falling off the bed and flailing ... I give Dave mad props for sleeping with him most nights that we're away from home.)

It took nearly 30 minutes for the phlebotomist to get everything ready for Teddy, which seemed ridiculous to me until he walked us back to an actual room with two other phlebotomists. The trio of them tag teamed Teddy's blood draw, with one verifying the entire setup (then leaving) and two conducting the blood draw of 21 vials of blood. Teddy did remarkably well, with some tears and a few cries but mostly his normal demeanor. He gave both phlebotomists high fives before we walked out. When the EKG technician who tried (unsuccessfully) to do the EKG yesterday after the blood draw saw us walk out with Teddy smiling, he gave us an incredulous look and asked, "Really?" I said, "Yes, this is after 21 vials of blood."

We took advantage of Teddy's usual happy self to eat some breakfast and then snuck back for the second attempt of the EKG. I say "snuck" because Dave decided he was going to take Teddy and left me to decide if I was following him or telling the nurses we were leaving. I opted to tell the nurses, who said they'd walk us down to EKG. That's when I had to say that Dave had already left with Teddy and I was just letting them know that we'd be back for our next appointment (since they escort us to every appointment). That leads me to this brief list, which I'm sure will grow through the next couple days.

Dave's list of ideas on how to save the government millions of dollars:

1. Turn down the heat. Seriously, I swear every procedure room is hotter than a sauna.
2. Stop having escorts take us to every single appointment after designing a super fancy app that gives your turn-by-turn navigational directions throughout the entire complex.

I met up with my runaways at EKG to find Teddy smiling and cooperative. He tried to pull at the wires a bit and cried a little but was much, much better than yesterday. The reading wasn't perfect but was readable, which was good enough for us. Teddy was super helpful pulling off all the sticky tabs (whereas many children would cry or flinch for pulling off sticky things like bandaids) and even handed them to the technician. He gave the technician a high five and left smiling.

The EKG was quick enough that we were on time for our ophthalmology appointment. Teddy's never had his eyes checked but did  today. I was actually quite amazed at how much information they were able to glean from a non-verbal child who doesn't have the comprehension to identify matching pictures yet. That was the first thing we tried, and Teddy did point to a few things completely at random and often without even looking. So we switched to a different room and used boards with different patterns of lines to see if Teddy looked at or pointed at the lines instead of the plain board. He scored about 20/80 with the cards, but the doctor suspects his eyesight is better than his attention span to the activity. She did a variety of other tests using her rubber duck and different objects, which were all normal for Teddy. Teddy was fairly cooperative, although he definitely wanted to wiggle away.

One thing she noted was the dryness around his eyes, which she said combined with his perpetual runny nose and frequent rubbing of his eyes (which we always assume means he's tired) could point to allergies. They'll look closely for other signs of allergies tomorrow. These are the types of things that I think give us value in doing all these procedures. There's so much about Teddy that we don't know because we can't read his mind, so we make assumptions and quite frankly probably miss a lot of what he tries to communicate.

Our visit was pretty quick because everything else they'll check while he's sedated tomorrow, including determining his actual vision. If they tell us he needs glasses, we better find a pair that comes with superglue to attach them to his head. She did also recommend he go in for annual screenings both to continue checking his vision and to make them easier as they become more familiar. Personally, I think there's a big difference in someone who's prepared to do an eye exam on a non-verbal child with significant delays and any eye doctor I'd find locally, but maybe I'm wrong.

Since ophthalmology was much shorter than our scheduled time, that left us with a break. We actually got Teddy to sleep for about 30 much-needed minutes. He could have slept longer, but Dave made the mistake of trying to remove his arm from being crunched under Teddy. That's when Teddy woke up and decided we needed to play.

Teddy and I went to the main playroom, which is open limited hours and has a tremendous amount of toys maintained by recreation therapists. Teddy and I spent about 40 minutes there, riding toys, playing trains and helping a therapist check markers to see if they were dried out. Teddy spent most of his time, however, trying to get into the other room where someone was cleaning toys. Once that door was shut, he spent the most time playing in the sandbox.

When that playroom closed at noon, we headed back to his room for lunch. After Teddy ate his food, we walked outside for a bit to enjoy the sunshine. Teddy found a playground and pointed at it to show he wanted to play there. So we spent a bit of time outside playing until we had to head inside to change Teddy. One really nice thing for urine samples is they allow us to stuff Teddy's diaper with cotton, which they use to obtain the sample. This has to be so much more comfortable for Teddy than sticking a bag on him to attempt to collect it, which has leaked anyways in the past.

After we grabbed food from the cafeteria for Dave and me, we headed to our pre-anesthesia consult. We met with two nurses there to review Teddy's medical history, particularly his history of sedation for previous MRIs. They'll be sedating him for around 3 hours tomorrow to do all the invasive procedures as well as finish testing some other areas like hearing, vision and dental (without getting bitten). Teddy was OK during that consult, although he got a bit antsy. It was nice to move past the whimpering as soon as we entered the room.

The EEG was next on the the schedule, and that's where we saw much more of the crying and hysterics. The two-person team did a great job of placing the leads efficiently with a really great approach with Teddy, but he was not a fan of the entire procedure. He didn't try to rip the wires off his head as much as I expected but cried and screamed through the entire placement. He was mildly interested in his pretend person with fake EEG wires that he can rip off, but that entertainment lasted only a few moments. I think much of it was that he was exhausted again. When he's tired, he just cannot deal with what he doesn't understand and doesn't like.
 

Santa's elf who lost the bar fight?

He calmed down when Dave picked him up as soon as the wires were set, and eventually he calmed down enough to allow Dave to sit down. He even was fine when we removed his pacifier to finish the EEG. He did try to kick the strobe light, but who wouldn't? At the end of the EEG, he was calm enough and happy enough to give the technician a high five.

He didn't stay happy for long, though, because we learned that the VAD on the schedule stood for something that meant using an ultrasound to place an IV. Teddy whimpered as we entered that procedure room and began crying immediately. We had a few minutes of prep without tears, but he wailed when the IV was inserted. And I don't blame him. When someone you don't know wraps you in a big protective hold and forces your arm straight, that must really suck. I understand the need, so that the IV is placed well without Teddy moving, but he's only going to fight that. I think the guy was surprised by the strength of Teddy - he may have hypotonia, but that child has some serious strength to him. Of all the cries I've heard the past two days (and I've heard a lot), this was the only time I heard him cry in pain as she had to adjust to find his vein.

Teddy needed to be carried out of that procedure room because he was too hysterical to sit in his chair, but he was much better by the time we reached the lobby. We met with Lynne and Tara from his team to debrief and sign consents for tomorrow's procedures.

Teddy was understandably tired and crabby, but we were able to sign the consents and hear most of what Lynn said. His labs that are back thus far are all relatively normal, except one that I don't recall. It is related to immunology and is about 3 times higher than normal, if I recall correctly, which is elevated but not extremely elevated. She said the immunologist we meet with tomorrow would be discussing that with us.

We had about two hours to head back to Children's Inn to get a break from the hospital and grab some supper. We ate the taco meal that was brought in by volunteers but unfortuantely missed the cupcakes at Bingo tonight. (The volunteer raved about the cupcakes from Georgetown Cupcakes and said we should stop by at least for a cupcake, but it just didn't work out with the sleep study. She called them world renowned. Seriously. We missed that. They better have been amazing.) The highlight at the Inn was there were musicians from the National Philharmonic who played music following supper. We didn't get to stay for the entire time, but it was the perfect thing to perk up a sleepy Teddy. He really likes music, so he was smiling and tapping his foot. They had instruments, like egg shakers and little cymbal shakers, so Teddy got to play along. Apparently the lady playing the piano previously lived in New York and accompanied people auditioning for Broadway. Just an ordinary piano player, you know.

Dave looks skeptical. Teddy is enthralled.

The fun ended when we had to take Teddy back to the clinic for his sleep study. We arrived at 7 and entertained him until nearly 8 when he was escorted up for sleep study. It took a good 45 minutes to get him hooked up while he whimpered and then screamed and another 30 minutes or so to fall asleep. Poor kiddo was exhausted and then taken to a different room, hooked up to a whole bunch of wires and belts and stuff and was understandably overtired after another huge day today and staying up 2 hours later. After he dozed off, I snuck out of the room. We had anticipated only one of us being allowed to stay for the study, so we hadn't planned for me to spend the night there as well. I think they would have let both of us since Dave was in the bed with Teddy, so the guest "bed" was available. I feel as though I should be there but also wanted to unload all of today's occurrences and have one of the three of us get some sleep.

Dave is my hero. I would not want to be here without him. He has the magical gift to get Teddy to sleep, and me, I'm the fun one. Seriously, I'm the one who Teddy tried to make sit in the little car that we use to push him around the hospital. He was very persistent, so I straddled the car and duck walked around while he "pushed" me. He's also tried to make me ride a boat, which I refused because I would have broken it, and the airplane at the airport. Wait, maybe that makes me the gullible pushover instead of the fun one?

Oh, we also visited the gift shop today to get Teddy his souvenir NIH t-shirt and Dave a book on algorithms for human behavior. Seriously, I'm not making that up. There are a lot of really, really smart people here, and the gift shop markets to that population. I've never heard people during lunch before discussing researching this molecule, etc.