After spending 9 weeks sleeping in the children’s hospital (between our 5 weeks in November/December and the last 4 weeks) I finally realized that sleeping would be so much better with pillows and blankets from home! The hospitals idea of a cozy bed and my idea of a cozy bed are vastly different! But at least they provide us with a parent bed, in the ICU they give you a recliner. Luckily we’ve only had a handful of nights in ICU – another positive.
Most of the nurses here are my age and I’ve gotten to know them all pretty well so they are actually great company. And since Foster requires a little extra attention he typically has extra nursing care so the nurses are around a lot for chatting. And many of the nurses have taken to calling Foster, Fuzzy.
We’re gradually learning about a lot of resources that are available to us which makes life a little bit easier. For example, Foster has been invited to utilize the Rotary Flames House. The Flames house is on the children’s hospital grounds and is staffed 24/7 with nurses and doctors. We’re given 30 nights/year of respite care so that Brett and I can have a break from being primary care givers and re-charge. We can sign Foster in for a minimum of 24 hours and a maximum of 14 consecutive days. This respite care is probably the most valuable service to us because we don’t have the option of leaving Foster with a caregiver (even a Grandparent) for even an hour. Daily care for Foster currently includes safety during seizures, administering daily medications, administering rescue medications, suctioning of secretions, administering oxygen, inserting his feeding tube as needed, checking/testing for correct placement of tube, working the pump or gravity feed, monitoring the kitogenic diet, testing blood ketones, blood urine and blood glucose (each one twice daily, spread throughout the whole day) and keeping accurate records of seizure activity, ketone and glucose levels, medication changes etc. So as you can see, the 14 year old girl next door that offered to babysit Clay for a great rate….not an option anymore. I think 14 consecutive days would be too difficult but we have signed Foster up for a couple of weekends already at the Flames house. He’ll be there for our friends Kara and Jordan’s wedding weekend in October and also for our friends Jack and Katie’s wedding weekend in the summer. Both require travelling and I wouldn’t even know how to begin travelling with Foster and all of the equipment he is hooked up to. Besides, it’s much safer for him to be under the care of medical professionals and on the hospital grounds if anything should happen while we’re away. It will be very sad to take a family trip to Ontario without one member of our family 😦
Unfortunately, Foster has to be an out patient to utilize the Flames house and since he’s currently and in-patient and an in-patient requires a 24/7 parent at bedside, we wont be able to utilize the house in time for Linda and Jim’s wedding in the Dominican next week. Brett and Clay will still go though, Clay has a duty, he’s a ring bearer 🙂
Here are some photos from the last couple of weeks:
Back to positive thoughts though, we recently learned that the cost of unit 3 (Foster’s unit) is $3000/night. That’s crazy, so thank you to everyone that pays taxes because we haven’t seen a single bill for all of our 9 weeks here under the care of multiple specialists! The Kitocal formula (you’ll learn about that later) is also ridiculously expensive and has to be ordered from the U.S. and we’re also provided funding for that through the FSCD program which we have also just learnt about. So we’re happy to be Canadian.
We also have had both Grandmas visit to help out which has been beyond helpful. And on two occasions, Brett and I even got to go for a date! We had one Grandma at home with Clay and one Grandma sitting at the bedside at the hospital and Brett and I got to have a really nice dinner out and go to a movie all in the same week. We saw 12 Years a Slave, sad, good but quite sad…if you’re thinking about going.
Here’s a photo from one of our date nights, we ended up wandering through McMahon Stadium after dinner.
No real progress has been made for Foster, still living in the hospital, still on a feeding tube, still having difficulties breathing, still on oxygen, still no talk of discharge.
Brett and I have completed the teaching to be able to insert his feeding tube, check for placement and operate the pump or gravity feed because it’s assumed that when we do go home we would be going home with a feeding tube and potentially oxygen and suctioning.
Foster has also been on the kitogenic diet for a week now. It’s a bit of work, I have to test his blood ketones, blood glucose and urine ketones twice every day to ensure that his levels are exactly where they need to be for seizure control. Having levels to low wont provide any seizure control and having levels to high will either be a stress on his body and cause more seizures or he’ll show signs of excess ketosis and feel sick and other side effects. It’s not too difficult right now because it just means a special ketocal formula. However every single carbohydrate has to be accounted for including those in baby wipes, soap, lotions etc. If he is to stay on the diet it will become more time consuming as he gets older and starts to eat more foods. He’s on a 4:1 ratio which means 4 grams of fat to every 1 gram of carbs and proteins combined. So every meal has to be measured out. For example, if I was to make cooked pureed carrots (baby food) on a 4:1 ration, 1 cooked, drained carrot has 1 gram of carbohydrates, 0g fat, 0g proteins. So for every 1 cooked carrot I would have to stir in 4 grams of fat which could be half a tbsp of unsalted butter which has 0g carbs, 0g protein and 6g of fat….so it would be a little less then a tablespoon. We had to buy a kitchen scale accurate to 1 gram. We also needed to get an infant scale and we have to send Foster’s daily blood and urine ketones, blood glucose, seizure record and daily weights every week to the neurologists. But since we’re in the hospital they just come up to the room and ask for his level for now.
The most exciting part of Fosters day, watching his mobile:
We couldn’t miss his 4 month photos…except we couldn’t move him much cause his cords weren’t long enough 🙂
So Foster’s average now is around 9 seizures a day. Like full body seizures, although he’s also started doing unnatural blinking episodes that the neuros said could potentially be seizures as well but smaller, quicker ones. Although we can’t confirm that without another EEG so in the meantime we don’t really count those as seizures. I don’t think he’s had a day with less then 7 seizures in a couple weeks and the most he’s had in one day was 18 seizures about a week and a half ago.
However, since starting the diet, all but one seizure have been under 5 minutes. In fact most of his seizures are 3 minutes now, whereas before most of his seizures were hitting at least the 5 minute mark and then requiring rescue meds. So in the last week, with all but one seizure he hasn’t needed rescue meds. Which is awesome. However, the one seizure that was over 5 minutes was 26 and a half minutes. And didn’t respond to rescue meds that were administered at 5 minutes, 10 minutes or 15 minutes. Then finally responded to the final load does of rescue meds through IV. Which wasn’t awesome. And the poor nurses had to try to put an IV in his teeny tiny vein while he was actively in a seizure because his prior IV had fallen out 20 minutes before this seizure started.
Overall though I think Foster’s doing better this week then he was a couple weeks ago. His seizures a couple weeks ago were accompanied by really low desats. His oxygen at one point desaturated to as low as 11% and his alertness was almost non-existent. He was having a lot of troubles breathing, clearing and protecting his airway, a lot of his medications were causing excess secretions and drowsiness and there was at one point a lot of talk about a breathing tube and going back to ICU. He seems much more stable this week with the exception of that one long seizure on Saturday.
He’s still not getting enough time between seizures for his brain to recover and develop as a normal brain would. But he is getting longer stretches of alertness. The plan is to move him from a continuous feed to a bolus feed later this week and then maybe next week have a swallow test done to see if we can attempt any oral feeds again. In the meantime it’s really important for him to have his soother as often as possible so that he doesn’t lose his sucking instinct, which can happen when a baby isn’t using it. However even if oral feeds are successful, he will still need his feeding tube as it’s expected that we wont gain enough seizure control to avoid periods of sever drowsiness in postictal states and during those periods he can go hours without waking to feed. We’ll also be making the first attempt to wean off of the continuous oxygen in the near future to see if he still needs it all the time, hopefully he’ll only require it during seizures.
But since life continues outside of the hospital as well, I’ve started planning Clayman’s birthday party which is fun and I also booked a couple of family photo sessions for the summer so there’s a couple fun things to look forward to!
Here’s Clayman and his buddy Liam from our pancake breakfast play date a couple weekend’s ago (and my lovely friend Lindsay in the background.) Liam really likes the peanut butter 🙂
My friend Jade watched Clay for a day the other week so that Linda could come to the hospital to see Foster. She sent me this cute video of Clay and his little friend Archer doing crafts at her house 🙂
And Clay with his bedhead after his nap at Jade’s house:
Sorry again that this is so long but I assume if you’re reading it then that’s because you want to know what’s going on. I really don’t want to be the person that only has depressing hospital stuff to talk about but I’m putting it all on here because I really don’t have the energy to repeat this conversation 20 times to 20 different people. If that makes sense, not to be anti-social but sometimes I just can’t talk about it over and over and over again or answer questions. I just can’t. And if it is a hard day, and some days are, I’d really rather not be asked a lot of questions and just talk about what’s going on in your life if we could. And I think that Brett feels the same way. Because there’s a tough situation, that’s emotionally draining and then it passes but every time someone wants an update it’s like your forced to stay in that spot. So we really really appreciate everyone that’s taking the time to stay updated on here because it really does allow us to progress and be present and not relive a bad moment over and over again.
And before I go, here’s a couple more photos that I found of the boys together from the morning before we came back to the hospital: