I've been thinking about the need to update this darn thing but never really get the time to get around to actually doing it. Life has really just been that busy and I don't really have that much time to sit down and do a funny, witty update before Tink wakes up from her nap. So this shall be pretty much point form.
As last stated, Dinky had his first generalized seizure February 1st. We thought that the increase in clonazepam would solve everything. And it did. For 12 days.
February 12th I had noticed a few twitches here and there in the morning just before his morning medications were due. Called Neuro and left a message for them to call me back. Nothing. After his meds kicked in, he was fine. Until a half hour before his afternoon dose was due. Same thing. More twitches. Called our pedi and he said that he wanted to see us but due to the fact that Husby wasn't home he agreed to meet us at the hospital the following morning. But to give him an extra dose of clonazepam. 6:30 rolled around and there Dinky was. Twitching again. But he was laughing after every twitch, smiling and just being the goofball that he is. Paged Neuro yet again and they finally got back to me. Gave his evening medications with an added increase of Keppra -- Neuro figured that's all it was.
He had also just developed a small cough and a generous amount of snot.
Then about 2:30 am (again with the early, early morning) I woke up to some odd movements. Turned on the bedside lamp and witnessed Dinky slip into another generalized seizure. So I immediately set the timer function on my phone and between watching helplessly I was running around and throwing everything we would need into a backpack. 5 minutes passed and he was still seizing so I called 911 as per instructions. The lady on the other end of the phone was amazing and kept reassuring me that help was on the way. Yet he wasn't stopping. Once I got off the phone with 911 I called my neighbor to tell them that the ambulance was on the way and I needed her to come and sit with the kids until I could either get a hold of my mum or my mother in law. 10 minutes passed since the time Dinky started seizing to when the ambulance showed up. They came into the house, into our room and saw that he was still seizing so we wrapped him up his blanket and just left. In the time of him starting to seize and us getting into the ambulance I had managed to pack my diaper bag, grab his medications, throw together a backpack with clothes and toss my planner into the bag.
Grabbed all bags and carseat and away we went. Once in the ambulance I was answering questions about his medical history, the medications he was on, our last visit to Children's hospital, trying to call my mum, got through to my mother in law and filled her in, texted Husby who was at work and finally called him and left him a message that we were on our way to the hospital because Dinky was seizing again. Enter in the oxygen mask because he was working way to hard to breathe and his SATs kept dropping. And suctioning. Oh the boogies we got out of him in the ambulance..
15-20 mintues passed (probably closer to 20) and he finally stopped seizing. Get to the hospital and they checked him over. He had a temperature of 38.3 so Tylenol it was for him. Kept him on the O2 for a while and he slept. Husby showed up and we just sat there, wondering... worrying. The nurse brought other another stretcher so that he could lay on it and try to get some sleep while I curled up with Dinky to try and catch a nap. Our ped came in first thing in the morning, just as Dinky started to twitch again. Time for morning meds.
Except the meds didn't stop them this time. So he was given an IV for fluids and Ativan. A small dose of that and wait. Still twitching. Another small dose. Still twitching. Yet another small dose and he finally stopped. Blood work TRIED to happen but he was dehydrated from not eating for hours. They did the best that they could but Dinky just wasn't giving up his blood.
His temp was up again so more Tylenol. His SATs were dropping so more O2. Enter in one puzzled and pissed off Pedi that he couldn't figure Dinky out and we were going back to BCCH some time that day. Checked my bags and it turns out I was missing some pretty important stuff. A bottle for Dinky, and all kinds of toiletries for myself. Husby ran out and got all of that for us and then about 1pm he went home and we were on our way to the airport.
Dinky needed O2 on the flight down. We get to BCCH through Emerg and were checked into a room there to be assessed. Fever. More O2, a short nap for me and a few hours later we were moved up into an Isolation room up on the 3rd floor. And in all that time Dinky hadn't really done much nursing wise. Swabs and boogie collections happened and just trying to get him to settle down and sleep for a while.
Blood work. More blood work.. and then I learn that he tested positive for RSV. And THAT'S when things started getting crazy. He needed constant O2 because he wasn't breathing well, constant tracheal pulling and just not happy systems that way. And yet still not eating. My days passed in a constant series of saline nebulizers, nasal and oral suctioning, Tylenol and hitting that damned silencing button on the stupid SAT monitor. 4th day of being there NG tube was brought up and I said I needed to discuss it with my husband. So I did and we decided that feeding via NG would take some of the pressure off of his breathing and relieve him a bit.
So in the first NG went and for the first time in days he was able to get a feed in. 100mls every 3 hours. Medication was given in the NG as well. Swallowing was just toooooo much work for him. Chest x-ray showed his lungs were clear, VICTORY! It took a long time for him to get better. But we saw doctors every day. sometimes two or three times a day.
So now Dinky is on Clobazam. Which is what our pedi prescribed January 11th.
Medications were adjusted. 5ml of Clobazam, Keppra increased to 6mls, 6ml of the peridoxyne (B6), and 2mls of Clonazepam 3 times a day.
Ugh. My brain is so overloaded with all of this it's insane. It's literally working overtime to try and get everything straight. Clobazam was added the day after we were admitted. Metabolics came back that we could stop the B6 sometime in the first 10 days we were there. Clonazepam decrease happened I think the first week we were there?
I got to visit with friends I hadn't seen for a long, long while which was really nice. One kept bringing me food as well! Homecooked food? Yes please! Kept busy with Netflix on my Kobo -- yay for WiFi! Even got to visit with my gramma and great gramma!
And THEN I get a call from my mum that her house was burning down. Made sure that no one was hurt and then called Husby to go up there and help. And you know, grab the kids as they were at the farm...
So really, it's been a very very shitty weird whatthehelldidIeverdotodeservethis kind of start to the year.
So much for point form.
Anyway, we've been home for just over 2 weeks now. We were given a rescue medication just before we left to use if Dinky seizes for 5+ minutes or has a cluster of 3 twitches in 30 minutes.
...and what does he do? On the 8th the little bugger started twitching.Blah blah blah... gave rescue med just as we were getting ready to eat dinner. Husby called mother in law. I called Neuro. Neuro said to up his clobazam to 7.5mls and to give then.
So, 5pm noticed twitching. 5:15 gave rescue. 5:20 called Neuro. Neuro would call me back. 5:40 give the higher dose of Clobazam. 6pm we were in the truck and going to the hospital.
We were home by 10pm that night. The little booger. So higher dose of the rescue as we had to give it to him again... as well as the increase in the Clobazam. Needless to say he's been pretty zombie like. But he IS improving.
And wouldn't you know. Yesterday Tink went down for a nap with a small cough and stuffy nose. Woke up with a seriously goopey eye so Husby took her to the walk-in clinic and came home with a toddler that has the start of double ear infections, sinus infections, swollen tonsils AND PINK EYE. So SHE decided to almost get herself sent to the hospital as we couldn't get her freaking temperature down for ages. 39.7 was the highest I had ever seen it. It was just not very fun.
Okay. I cannot update any more. My brain is just mush. So much for a short, point form...
OH!
Dinky cut his first tooth and has decided that the underside of my nipple needs to be ground flesh. Nursing is SO MUCH FUN!
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