I started to write this entry over two weeks ago and never got around to finishing it.
As most of you know, Emmett hadn’t been responding very well to going back on vigabatrin and transitioning off of the ketogenic diet.
Here’s what happened:
- After the first dose of vigabatrin (that was too high) he was crying and inconsolable for about 24 hours
- We lowered the dose and then he became crazy hyper, like Emmett on speed. Our early intervention worker saw him and and was like “whoa.” He wasn’t sleeping and stayed up at one point for 17 hours straight.
- Another call to the neuro and he said to only give him the vigabatrin when we noticed the generalized tonic seizures. That wasn’t a good idea because he was always on/off/on/off of the shit.
- Emmett had stopped wanting to eat or drink, either a result of the vigabatrin or not being used to more carb and sugar in his diet. This went on for almost 2 weeks.
- I tried contacting the dietician at the IWK but she was on vacation. I was supposed to be able to contact the pediatric neurologist dietician and when I tried that I got her voice mail saying she was gone until August as well.
- Insert copious amounts of expletives here
- He was always throwing up at night while we were trying to get his meds down. He had been holding his liquids/food in his mouth and the meds were dissolving and they taste AWFUL. So that is most likely what made him puke. And also because by this point he was too ketotic which made him ill.
- We took him to the ER on the 30th to make sure he wasn’t dehydrated because he basically hadn’t eaten, drank or peed very much in two days. His blood sugars were low because he wasn’t eating his full meals (which had just been his ketocal formula again) or drinking enough water. Thankfully he wasn’t dehydrated, but I knew he was too ketotic since we test his urine all the time to keep that in check.
- The pediatrician we saw in the ER told us to stop the vigabatrin to see if that’s what’s causing him to not want to eat or drink. He also said we could probably start him on the new med, valproic acid, while we’re weaning him off the diet. But our neuro told us he wanted his ketones to be pretty much non existent before we start, and even though we had been reducing the fat ratio in his diet, his ketones were still through the roof because he wouldn’t eat or drink.
- Another call to our neuro to talk about this since he wanted Emmett to be on vigabatrin. I told him what the pediatrician told us and he basically agreed to go along with taking him off the vigabatrin and starting the valproic acid. I questioned about starting the new med even though his ketones are high, and his main concern was his carnitine deficiency he had because of the diet. He wanted us to start the new med but we didn’t. I wanted to talk to our other neuro at the IWK to get a second opinion.
- I called her office and OH GUESS WHAT! She’s out until August. Her secretary said that basically the neurology department is on a 2 week summer closure. How can they even do that? Let’s all take our vacations at the same time, wouldn’t that be funny? HAHAHA!
- Insert copious amounts of expletives here.
- Emmett became shaky because of the low blood sugar so we tried give him some orange juice to try and help level him out but that made no difference.
- Once we stopped the vigabatrin and he still wasn’t eating or drinking we brought him back into the ER on the 3rd. He was still vomiting his meds and becoming more lethargic and ill because he was too ketotic. There was no way I wanted to start him on a new medication while he was too ketotic. He needed to stop feeling nauseous and keep food down before I agreed to that.
- We ended up being sent home around midnight and was told to come back Sunday morning on the 4th to get bloodwork done.
- We met with an awesome pediatrician that was on call and she admitted him right away.
- They hooked him up to an IV and after about 24 hours we finally started to see his ketones dropping and on day 2 finally started to eat and drink again and we then started him on valproic acid.
- We were in the hospital for 5 days before we were given the green light to go home.
- The IV is just what he needed and so far things have been going well at home. He’s been on the new medication for seven days and can take up to ten days before it becomes completely effective.
So, yeah. The past month has been a doozy. Hopefully things will stay settled so I don’t go into early labour. Our little family needs a little break for the little miss arrives. Which is NEXT MONTH, by the way.
We have been really enjoying not having such a strict routine/time frame to follow now that he’s off the ketogenic diet. We went out yesterday and I said, “Ryan! It’s 2:30 and we don’t have to hurry home to give him dinner for 3:00!” We were at the mall a while later and Ryan said, “Bubby! It’s 3:00!” It’s been so nice letting him sleep when he wants to sleep and wake up when he wants to wake up. He still needs his meds in the morning and in the evening but we have some time to work with so it isn’t as strict. One morning he slept until 9am! Another morning 8:30am! And he’s taking less naps during the day since he’s getting more sleep at night. He’s been a little apprehensive about a lot of foods but that’s to be expected. He isn’t sure about a lot of the flavors because the keto diet was really bland and they were such tiny portions. He’s also been super hyper since we’ve been back home and I’m not sure if that’s due to the sugar in his diet now or the new med. Could be a combination of both, who knows.
The Safety Sleeper bed also arrived! It’s put together, we’re just waiting on his bed frame/set to arrive next week. I’m anxious to see how he does with sleeping in it.
And now for some cute! These were taken 2 weeks ago in the middle of the chaos, and right before Emmett started to feel really sick. We hadn’t taken a family photo since the fall so I was determined to get one.
This first one cracks me up… Emmett and his wandering hand!
I don’t know if it’s my pregnancy hormones or what, but when I first saw this last photo it made me cry! It’s such a cute picture of Ryan and Emmett. It’s just so genuine. Love it.
I can’t believe baby girl will be here NEXT MONTH.
I called to make my first obstetrician appointment (which is already tomorrow), and wouldn’t you know, the doctor I requested isn’t there this week. I could choose between two doctors which just so happen to be the two that I like the least. One being the one that delivered Emmett whom I vehemently denied. So I decided to go with the other one who doesn’t have any bedside manner. I really wanted to see who I requested so I could speak to her about my options and just have a good conversation about it all. Hopefully I’ll still be able to have a good conversation and discuss what’s been going through my mind and get some good advice.
A big thank you goes out to everyone that was there for us during this trying time. All of your thoughts, well wishes and prayers are very appreciated. Our WildMan is doing better and hopefully it continues. We need some downtown to get ready for Emmett’s little sister!