On April 9th, 3 short days after my last update, Clark started doing something funny. He'd throw his hands in the air with his chin tucked down, squint his eyes and stuck his tongue out. The 1st time this happened, we were shopping for a new vehicle...a van, in fact, so that we can pile everyone in. I didn't see it--Jeramy did--but he saw it looking into the rear view mirror, into the mirror on Clark's seat back. He said "oh...Clark just did something really cute." Apparently, it looked like he was making a funny face and stretching. It happened again that day, I still didn't see it. My grandparents were keeping Clark and I was running errands. Later that evening, I definitely saw it, and I immediately knew something was wrong. Not only did he do it again, he did it 5 times in a row. I went to pick him up and tried to be calm--after all, he wasn't upset and seemed ok afterward. My grandmother looked at me & I said "I think he's having seizures." Jeramy was at work, so he received a call from me telling him to get there quick, because I was pretty sure something was wrong.
He showed up in about 2 seconds...as Jeramy is known to do in situations that might be emergencies. We decided that I should call the nurses line at Scott & White. Because as scary as the thing was--it didn't seem to effect Clark. The nurse asked me a lot of questions and at the end she said "according to what you're saying the most reasonable thing you could do is call 911." My jaw dropped and I asked her "Really? It doesn't seem that serious, couldn't we just drive him?" She said "We can't tell you what you should do, but based on what you've said, 911 would be the most reasonable option." So I was pretty stunned & even more scared then. We drove up to our house, packed Clark's bag and called 911. So far, so good..no other episodes of whatever was happening to him.
The ambulance arrived and asked their questions, I explained what was happening and got "Well, it doesn't really sound like a seizure to me...but if it was my kid, I'd take them to the ER, too." After a long (hah...20 or so minutes) backwards ambulance ride, with the wind blowing 90 miles an hour, we arrived at the Scott & White emergency room. See, the cool part about arriving in an ambulance is that you get right in to a room with a nurse and then shortly a doctor. Looking back, it was serious business, even though at the time, it felt like everything was ok.
The doctor wanted labs...ugh...that meant an iv. And he wanted urine...even bigger UGH...a catheter. We're really hesitant about the whole catheter thing, so I bribed the nurse into putting a clean catch bag on him instead. She totally understood our worry about the catheter and was easy going about the bag method. While all this iv/catheter stuff was going on, I was discussing the situation with the nurse. She agreed with the paramedic that it didn't sound like seizures. As well meaning as the 3 of us were...we had not been to medical school.
Awhile later (you know how the ER goes) the head doctor comes in and informs us that Clark will likely be admitted. Um, what? And that he's going to call the pediatric neurologist. Wow. Meanwhile, a pediatric resident (I've noticed that about 90% of residents and young doctors have NO bedside manner, btw. To my friends who are residents & young doctors: This is NOT you. I repeat---NOT You.) comes in and goes over everything I'd already gone over 4x that evening. Check, check, check...her work is done & she disappears to go find her superior, the staff pediatrician.
Enter---the staff pediatrician. (Disclaimer: I am a parent who works very hard on having a great working relationship with all of the doctors & staff we encounter. However, it is now 4am, and I've almost been awake for 24 hours.) She informs me that Clark doesn't meet admission criteria, however, she'd like to admit him for monitoring. Knowing that we had an MRI scheduled in 4 days, I said that I was concerned about Clark having any extra stress between now and then, especially since he hadn't experienced any other episodes. I know that sounds all kind and reasonable, at the time though--I know I sounded like a hard headed medical idiot...thank you 4am. She repeated that she thought it was important for them to be able to monitor him. Ok...time for me to shut up.
Medical transportation arrives avec wheelchair within about 30 minutes. Ok people, at this point, I'm straight-up delirious. I hop on for the ride & away we go. I'm noticing that we're going a weird way to the pedi floor. Once we arrive on the floor, I'm thinking "Ok, where are the cool wall murals and the train tracks (at least I think they're train tracks) on the floor? Why is it so stark? Where are we? The answer: Pedi overflow unit. But Hey! I see a familiar face! One of our old NICU nurses!..(sorry friend, I think your name is Jennifer but my memory went out the door when Clark made his appearance...but I was excited to see you, nonetheless.)
Mr. Transportation wheels us into a closet...ahem...room. And all I see is an office chair-type chair and a metal cage. Out come 3 words I should have learned long ago never to ask. "Are you SERIOUS?" Mr. Transportation asks if I want him to go get another chair. I mumble something along the lines of "no, I really don't think that would help." (But I'm sure it didn't sound that nice.) I was pretty upset about the situation at this point. Good point: We had our own bathroom. There were only 8 beds on the unit. Bad point: everything else. Let me explain something here: The regular peds floor is brand new. It has a bed for the parent. It's not 3'x3'. Our room wasn't, didn't and was.
So, we have to do arrival vitals (ugh, it's 6am) and all that good junk that I had forgotten about. (Yes, even though I did it 100 days at S&W and for several days at Scottish Rite, I forgot.) There are the things you just banish from your mind. Our nurse friend asks if there's anything she can bring us. Yes, blankets and pillows. Looks like Clark gets the cage, I get the floor & Jeramy gets the chair--because I can't sleep upright.
Oh, I might have slept for 20 minutes and I wake up with my shoulder aching from resting on tile. Jeramy is snoring. Typical. Nutrition is here with our breakfast trays. Yippee. (Where is my BED?! & Wait, where am I and what am I doing here???) Ohhhh, but there's coffee. Coffee & the worse breakfast item Scott & White serves--french toast. Do Not Want. Blech. But the good in all of this is that there is bacon. It's 2 slices of limp and soggy, but I don't care..it tastes like bacon. Thankfully, I had about 20 minutes for the coffee to kick in before our next doctor arrives. This is the point where I realize that we are no longer in the NICU, we no longer have Cipi, the Champion...we're going to be seeing a million different doctors.
Enter: Doctor #2 (Doctor #1's 7am replacement). She's short, sweet & things are kind of awkward (I'm sure Doctor #1 told her I was "difficult"), then again...I've been up for 24 hours and I really don't even remember my name right now, only that I need to figure out what's going on with the child in the cage. There are only about 1,000 questions I want to ask this woman. Wait...what? Huh? Sorry, I can't remember what I was just saying...uh huh..yeah...yeah...ok....[the door opens] WHATTTT? HEY!!!! I AM SO GLAD TO SEE YOU!! Stealing the scene: NICU nurse #2, Mrs. Woods. You have no idea, I literally teared up when I saw her. & I said a quick little prayer "Lord, thank you SO much for sending someone to take care of me....um..I mean Clark." Doctor #2 (who I forgot about for a brief time) is a little insulted that I interrupted our conversation to be excited about a nurse. Look lady...THIS is the woman who gave my son his 1st bath. STEP OFF. Lest you think I'm being dramatic, the doctor actually said something like "I guess I'm chopped liver". Well..yeah, kinda. Oh and here's the point of her visit. She's only here for 1 day & she's just here to say hi because, well, because she has no clue what's going on with Clark. Well, um, thanks for reminding me that we're about to see a million doctors who don't know my son. (If you're a parent who's had a sick child, or someone who's been in the hospital frequently, OR just familiar with hospitals in general, you completely understand what I'm saying here.)
Bye, Doctor #2, nice meeting you. Ms. Woods, my ever-vigilant sentinel, was here. Later that day, we all witnessed another "seizure-like episode". We were having quite a bit of difficulty with Clark by now because he wasn't used to sleeping in a cage (hello! his mommy and daddy can't get in there!). Ms. Woods rocked our world and rolled in a regular hospital bed. Thank goodness. The next 2 nights Jeramy and I took shifts in the bed & Clark slept like, well....a baby. Some time on Sunday, they hooked him up to the video EEG to monitor his brain activity and it also was on video for the doctor to view at any time. When he had an episode, we pushed a button to mark it in to video.
Fast forward->->->the next day the neurologist comes to talk to me. She said that he was, in fact, having seizures and that the diagnosis was myoclonic epilepsy. --Insert: heart sink--- Well, the good news is that we knew what was wrong, the bad news is epilepsy (not like I didn't know it was a possibility, what with the SOD & all...still it was a hard pill to swallow). He was put on a medication to control the seizures and, so far, he seems to be responding to it.
He was discharged the day after his diagnosis and had an MRI & genetic testing to confirm the SOD. We have yet to hear back from genetics, but the MRI showed agenesis of the septum pellucidum, confirming the SOD diagnosis. We have yet to actually meet with genetics (were supposed to, but had to reschedule..story to follow) or neurology, we have that appointment in 2 weeks. So I'm anxious to hear what they have to say.
The Saturday after the Tuesday Clark was discharged, he came down with a high fever. Advil helped some, but we couldn't figure out what was going on. So we had an urgent care visit with his pedi (that's why we missed the appointment with genetics) & she said it was likely something viral he'd picked up in the hospital (surprised?? didn't think so.) The day after we saw her, his fever broke and he broke out in a nasty rash. Roseola, we think so.
The other big deal going on is Clark weight. He is in like the .6%...POINT SIXTH, not sixth. And that's on a good day. We met with the gastroenterologist, suffice it to say, he recommended a G button & seemed aggressively in favor of that. We, along with his pediatrician, think that a 2nd opinion is warranted. That's really all I'll say on that. Bottom line: if Clark can gain on his own (which, he has...almost 2lbs in 4 weeks), we are going to give him every opportunity to do that. Shout out to ECI for being awesome and loaning us a baby scale so we can keep track of his weight daily.
So that's the story. It's been crazy around these parts and that's part of the reason I haven't updated lately. The other reason being my brain just hasn't been working & I was saving energy by not updating the blog....hah. Keep us all in your thoughts and prayers, there are days we know that God is surely holding us up, because otherwise it feels like we'd be down. I have to mention that a couple of our dear nurse-friends stopped by to visit while Clark was hospitalized and that meant the world to us. Thanks for loving us :) We sure do love all of you.
--I don't really know what's up with some of the pics being sideways, sorry.--
