Finally getting around to writing our first update since we’ve been home 🙂 I can’t even think right now of all the things we’ve been up to since our last family update but I think I’ll maybe just start off with an update on our little Foster bear since I have a feeling that’s what a lot of our family members are looking for.
(It’s too long, I’ll tell you right now before you get into it that this post is way to long…and probably mostly boring medical stuff, skip to the bottom if you’re too bored, there will be some pictures.)
Foster is doing really well actually! I realize our view of “really well” is a little different from the general public haha but I mean he hasn’t scared the crap out of us in a couple months 🙂 He’s actually been really stable since we’ve been home from the hospital. Even his pediatrician said that he’s been remarkably more stable then he was anticipating based on his handover from the hospital. And considering that in hospital, we were lead to believe Foster might not make it through the summer, he’s doing great 🙂
His symptoms are still progressing, especially his seizures. The seizures really are like chasing a moving target and the frequency seems to increase by about 10/day each month. He’s currently having between 45-55 seizures every day. Sometimes that worries me a lot, I wonder if they keep increasing and increasing, if there will come a point when he’s just continuously seizing and we wont have the periods of Foster in between anymore. And the seizures are changing in appearance now as well so it’s a little unclear when exactly it ends. Although generally I think they are all less then a minute, which is a big improvement from when all of his seizures were around 6 minutes long. We haven’t had any of the long 30 minute seizures since the last one happened in March and we also haven’t had any seizures requiring any kind of resuscitation since March 🙂 Although he does have apneic moments following seizures, generally caused by reflux and airway blockage which can require a little bit of deep suctioning and help to stimulate breathing.
Since we’ve been home, vomiting and reflux have become a big issue. The bigger issue, is that he doesn’t have the ability to protect his airway and so when he does bring up large amounts of fluid, he allows all of the fluid into his lungs and then has a few hours when he’s struggling really hard to breath. Some weeks this happens more then others, but in any case the work of breathing occurs multiple days a week. The vomiting occurs multiple times a day but I usually try to get to him quick enough to flip him on his side so it’s not always an issue.
In any case, he has a consultation next week to undergo three procedures. The first one is a surgery to place a G tube. That procedure seems like it’ll be a go for sure, I understand that they would do this procedure for all children that are tube fed long term. Essentially, some children only need to be tube fed for a temporary period of time. For example, when Foster was in ICU at 2 weeks old, when he didn’t wake up for a few days following a seizure, they inserted an NG tube (through his nose and down his throat, into his belly) because they needed to keep feeding him. But believed that once he was alert, we would be able to gradually work him back onto oral feeds. Which we did. So in that case, the tube going through his nose was a perfect, not too invasive, temporary solution. But then at three months old, when Foster started to show signs of no longer being able to protect his airway the tube was re-inserted and this time, it’s proven to be a persistent problem. So now, an opening directly into his belly will be made where a G tube will be placed. And his feeding tube will connect to that. Most families find this a beneficial long term solution for many reasons. Some being that it’s discrete, particularly I would imagine for older children who are able to communicate and socialize, it’s nice for them not to have a tube attached to their face. The tape also irritates Foster’s skin and I’m guessing it doesn’t feel comfortable having stuff taped to your face all the time. But also, currently I have to insert a new tube every week and I have to test that it’s in the correct place (being his belly and not his lungs…that would be bad!) before every feed and every medication. Which can occasionally be a really annoying experience because depending on how the tube is lying in his belly, it can be really difficult to get fluid out to test. And then if you can’t get anything you have to take the tube out and re-insert until you are able to get something. And I guess with the G-tube you don’t have to do those things because it’s always in his belly. But I’m sure I’ll learn to be frustrated with G-tube issues at some point haha.
Okay, the second procedure (P.S. sorry this is such a lengthy post but if you’re still reading I assume you’re still interested) is a Fundoplication. This one I’m less certain on, I’ve been told that it’s a procedure that used to be done more frequently but is now considered to be somewhat controversial. And that’s about all I know so far about that, although I guess I’ll learn more at his consult with the surgeon next week. Either way, I’ve been told that his doctors feel it’s a necessary procedure in his case. Basically, they’ll do something to the top of his stomach or the bottom of his esophagus, which will prevent him from being able to bring fluid up and therefor prevent him from allowing his lungs to fill with fluid. Will this be the solution to all of his breathing issues? No and his lungs are still expected to be effected long term by the secretions that he’ll continue to be letting into his lungs from above. But stopping the frequent large amounts of formula from entering his lungs will certainly slow things down in that department.
The third procedure is putting tubes in his ears to help drain fluid because he’s had fluid in his ears for the past 9 months. That’s a simple one. And they’ll do all three procedures on the same day so that they only have to put him under once.
But I guess the ear tubes bring me to another new point, we’re told Foster has likely lost his hearing now. But I’m not totally sold on that one just yet. He had an ABR last month which is a neurological test that they do to test if the audio nerve in your brain is responding, giving you the ability to hear. He has to be asleep for this test because they’re looking to pick out one single wave on the screen as they make a sound in his ear. One ear at a time. It’s important that he be asleep because if he’s awake then any muscle movement, like moving his eyes, would make it too difficult to pick out the little wave they are looking for. Anyway, they tested his left ear and said they weren’t able to get a response from the nerve they were looking at. So they said it looks like he can’t hear at all out of that ear BUT then he woke up and they weren’t able to test the other ear. I’m pretty sure it’s possible for someone to lose hearing in one ear and not the other right? Because our lovely nurse that hangs out with Foster bear three days a week told me that yesterday he heard a helicopter when she was taking him for a walk and looked up to watch it and then did the same thing as a car drove by. And I’ve seen him jump on multiple occasions to a loud clap or pantry door closing. So anyway, they’re thinking of doing the ABR test again in OR while he’s put under for his surgeries. And I suppose the fluid in his ear can have an impact as well on his ability to hear although the technician said the fluid shouldn’t impact it to that extent.
That’s certainly not the full Foster update but it’s a snapshot. We’ve been really happy with home so far and the support that we’ve received. I can’t complain about anything. We didn’t end up hiring a nanny as I’d mentioned in another post. We do have an overnight care aid 4 nights a week that we’ve hired privately and during the days Alberta Health Services, provides us with a nurse at our house on Monday, Wednesday and Friday every week. Which is great so that I can run around with Clay to get groceries and take Clay to an activity or playdate. For the first month and a half after being discharged, we were for sure still going to appointments either with our pediatrician or at the Children’s Hospital about 4 days a week. But things have slowed down now and we’ve actually spent most of July just around the house which has been nice.
Okay seriously, that’s enough medical stuff, even I’m bored now. Here’s some cute pictures of my boys hanging out on the couch 🙂
I wish I could tell you I just walked in the room and found those two like that but the truth is I somehow managed to snap a few pictures where Clay looked somewhat happy in between a couple of meltdowns hahaha life with a two year old! Oh well, it sure looks like a special moment between the boys 🙂
So what else has happened since we’ve been home…
We took the boys on an outing to Butterfield Acres with our friends. Clay had fun, he’s not the most adventurous little guy, he’s actually very cautious and really takes his time thinking about if he wants to do something. So I was pretty happy that he actually got right in, pet the animals and even milked a goat!
These ones are all from the Canada Day festivities in our community. I was so excited to take the boys out to watch the fireworks, I even kept Clay up until they started at 11:00pm. But let me tell you, I have never seen fear like that night, oh my goodness! Clay would have hidden under the car if I’d let him, he was screaming, clinging onto me so tightly and hiding his head. It was pretty cute but he legitimately thought something horrible was happening so we quickly got back into the car and went home. I never expected him to be so frightened by it! Last year he was great but I guess he was too young to know what fear was at a year old and now he was old enough to know that the loud banging and stuff in the sky was not a normal part of his life. Anyway, I love these pics from Canada day because Clay looks like such a proud big brother!
Here’s some more snaps of our life over the last couple of months
Clayman and Foster with some of their little buddies
This is a recent one of Brett and I from our weekend in Squamish at our friends Jack and Katie’s wedding. We had a great time and a nice break. We drove out with Clayton but left him at Grant and Erna’s house for the weekend. They live about half way between here and Squamish and Clay was a great traveler. Foster spent the weekend at the Flames House over at the Hospital. But his Nana visited him regularly for cuddles while we were gone.
We’ve also had a couple sessions of family photos done over the summer, for those of you on Facebook, you’ve probably seen lots of them but we’re waiting to get back the most recent ones so since this post is long enough, I think I’ll wait until we have them all back to post those. I’m so excited to see the rest of them though!