What a week! Since last Sunday, when Samuel flew back to Charleston, it feels like the highs are higher but the lows are lower. Now that we know what it's like to have him home, if it's possible we are even more excited for him to be here! But it also seems like the severity of the bad times are getting worse... not sure if that's just a result of being so excited to get him back home or if it's real. Regardless, I'm ready for the roller coaster to even out just a bit :)
By Sunday evening, Samuel looked exhausted, and a bit out of it - understandable for a kid who just had the day he had - but was smiley and wanting to play. And by Monday, he woke up a happy camper :) We thought, whew... just a blip, not a full BPD event, let's get him feeling lots better and home again fairly soon! It's a high, high!
Then came Tuesday and one of the worst BPD events he has had. I think I've described it before, but a severe BPD spell is kind of like the worst asthma attack you can imagine. I don't have asthma, but this is what I've been told... your work of breathing increases, you can't quite get your breath, you panic which makes it worse, your alveoli (air sacs in your lungs) begin to collapse. You then fight it so hard (or clamp down) that it's impossible to get a breath. Eventually your bodies response is to pass out so you will relax and can be given breaths. Fun, huh? I'm not sure it happens like that every time, but I hope it's a helpful explanation. What makes this one worse than some of the others was how quickly it happened, that it happened when he was sleeping peacefully, and that with his recovery he required compressions.... it was a low, low.
Again, by the next morning he was happy and smiling! Besides the trach, vent, g-tube, etc.... you would hardly know he was sick :) We know he's going to have these events, there's just no way to predict when or how severe they will be. He's feeling better so we monitor the next few days and all is well. Wednesday, Thursday, Friday, Saturday, Sunday - great days! A few moody moments, but it seems to be normal 1-year old stuff. Back to the high, high!
Then comes Sunday night, and a new scare. It sounds gross, but it's called a mucus plug, and it's exactly that. All of Samuel's air comes and goes through the trach (besides what he manages to sneak around it in order to sing :) ), which is kind of like a small, plastic tube. When you or I get a lot of mucus, we can cough it up, but when your airway is a small, plastic tube, it's not that easy. Small globs can pass through and that's what we suction out, but every once in a while he will get a big glob that is too large to pass through the trach. We haven't seen one like this before. In a moments notice it blocked his trach, and allowed no air to flow in or out of Samuel. I won't go into too many details, but it was terrifying. He doesn't have the reserves that you and I have... where we can hold our breaths, he can't be without air for very long before things get really scary. I can't say enough how lucky we are to have such a great medical team looking after our baby. Yep, another low, low.
Today, the reports were that Samuel is a happy baby again! A bit tired from his ordeal last night, but overall smiley and playful. Back to a high!
The initial plan is to restart the clock... Samuel will need to once again go 2-3 weeks without any events in order to come home. I say initial plan, because I think the medical team is going to meet and then schedule a conference with us. I feel like we are in such a weird place... in my non-medical opinion, it seems that 90% of the time Samuel is a happy little boy that could be home with his family, but the other 10% is so scary that he needs the immediate attention of the PICU. I'm excited to hear from the experts... I miss my baby.
By Sunday evening, Samuel looked exhausted, and a bit out of it - understandable for a kid who just had the day he had - but was smiley and wanting to play. And by Monday, he woke up a happy camper :) We thought, whew... just a blip, not a full BPD event, let's get him feeling lots better and home again fairly soon! It's a high, high!
Then came Tuesday and one of the worst BPD events he has had. I think I've described it before, but a severe BPD spell is kind of like the worst asthma attack you can imagine. I don't have asthma, but this is what I've been told... your work of breathing increases, you can't quite get your breath, you panic which makes it worse, your alveoli (air sacs in your lungs) begin to collapse. You then fight it so hard (or clamp down) that it's impossible to get a breath. Eventually your bodies response is to pass out so you will relax and can be given breaths. Fun, huh? I'm not sure it happens like that every time, but I hope it's a helpful explanation. What makes this one worse than some of the others was how quickly it happened, that it happened when he was sleeping peacefully, and that with his recovery he required compressions.... it was a low, low.
Again, by the next morning he was happy and smiling! Besides the trach, vent, g-tube, etc.... you would hardly know he was sick :) We know he's going to have these events, there's just no way to predict when or how severe they will be. He's feeling better so we monitor the next few days and all is well. Wednesday, Thursday, Friday, Saturday, Sunday - great days! A few moody moments, but it seems to be normal 1-year old stuff. Back to the high, high!
Then comes Sunday night, and a new scare. It sounds gross, but it's called a mucus plug, and it's exactly that. All of Samuel's air comes and goes through the trach (besides what he manages to sneak around it in order to sing :) ), which is kind of like a small, plastic tube. When you or I get a lot of mucus, we can cough it up, but when your airway is a small, plastic tube, it's not that easy. Small globs can pass through and that's what we suction out, but every once in a while he will get a big glob that is too large to pass through the trach. We haven't seen one like this before. In a moments notice it blocked his trach, and allowed no air to flow in or out of Samuel. I won't go into too many details, but it was terrifying. He doesn't have the reserves that you and I have... where we can hold our breaths, he can't be without air for very long before things get really scary. I can't say enough how lucky we are to have such a great medical team looking after our baby. Yep, another low, low.
Today, the reports were that Samuel is a happy baby again! A bit tired from his ordeal last night, but overall smiley and playful. Back to a high!
The initial plan is to restart the clock... Samuel will need to once again go 2-3 weeks without any events in order to come home. I say initial plan, because I think the medical team is going to meet and then schedule a conference with us. I feel like we are in such a weird place... in my non-medical opinion, it seems that 90% of the time Samuel is a happy little boy that could be home with his family, but the other 10% is so scary that he needs the immediate attention of the PICU. I'm excited to hear from the experts... I miss my baby.
Even though he's back in the hospital, Samuel is still a ham!
Fun with rings :)At home we've had a pretty uneventful week...
in comparison...
but lots of fun, everyday baby stuff :)
Brushing those pearly whites! Thank you for looking out for our teeth Gary :)
Brunch! This was the first time George and Olivia sat in the highchairs at a restaurant (after being cloroxed of course - after too much time in the hospital, I'm becoming that mom)! They even ordered their own bowl of grits from the menu to share :)
Checkin' out the world... 
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