Hello, son,
These past few days, we are back on alert.
Things are happening, and I’m writing because it’s the only way I’ve found to relieve this pressure, in addition to going for a run and trying to escape into my work.
Struggle to gain weight
First, there’s this potential gastrostomy issue that’s stressing us out.
We’ve reviewed the whole system:
- Nutrition and calories with the nutritionist.
- Feeding schedule.
- The place where you’re fed, ideally in a cool environment, with AC in your room.
- Visits from professionals too, which we try to minimize to limit calorie expenditure.
We’ve armed ourselves with patience, and honestly, we’ll try anything to get you to eat one more spoonful!
A huge thank you to your Grandma Michelle and Grandpa Robert who regularly help us via video call by eating virtual spoonfuls to make you want to eat and make you laugh, and it works!
Thanks also to Teddy the bear, given by our German friend Chris, who accepts your food when you don’t want it. His muzzle fur gets all dirty!
Thanks also to the people who help us and have to put up with our daily stress.
We’re crossing our fingers that your weight increases in the coming weeks!
The stitch they forgot in your belly
Following the ECMO you had at the hospital, you had kidney problems and had to have peritoneal dialysis on 2024-05-20.
On 2024-05-27, it was removed, and they had closed it with stitches. Normal so far.
A few days later, the ICU doctor asked the nurses in front of me to remove the stitches.
But in this hospital, communication and order are clearly complicated.
Let’s remember they told us our son had a cardiac arrest when that wasn’t the case, or that they were taking medication from the trash to administer it… (with proof)
As a result, it wasn’t done, and about ten days later, I had to report it to the doctor again, who verbally insisted to his team that someone take care of it. This doctor was good! Luckily for them!
I don’t know if it’s related, but since that day, a stitch has remained inside.
We reported it several times. We were always told it would eventually come out on its own.
Six months passed, and it started to get infected these past few days.
It had happened before, and an ointment was enough to clear up the redness, but not this time.
Your pediatrician then recommended surgery.
Very happy about this great news, we contacted a surgeon, who referred us to a nurse.
The nurse came.
She found that the stitch was complete, with the knot remaining inside the skin. Which explains why it couldn’t come out.
She managed to remove the knot and part of the thread. There’s still a deeper portion left, which should come out on its own since it’s no longer held by the knot.
The nurse was wonderful. She applied an anesthetic ointment and tried her best. Also calling the surgeon to ask for his opinion;
Despite everything, you cried out for a long time. We took breaks so you could catch your breath. We had to increase your oxygen flow so you could breathe.
I can no longer stand that this hospital’s shortcomings make you suffer again and again.
Every forgotten detail, every oversight, you pay the price for it, and we do psychologically too.
Last night, your mom was crying, and I was fighting internally not to scream on the balcony and smash the doors.
The nurse was also critical of this hospital and this insurance.
Like all the professionals who visit us, and even more so those who have worked there…
I always try to forget all this, but it always comes back!
Risk of bronchoaspiration?
For two days, you’ve been feverish. Your breathing is not as good. Your oxygen saturation is also slightly lower.
Given that you vomited on Saturday and your breathing was a bit strained, we hypothesized that you probably had a slight bronchoaspiration.
Translation: food may have entered the bronchi and caused an infection.
It’s hard to know exactly what’s happening.
So we asked your pulmonologist for advice, and she told us to get an X-ray.
Your mom is amazing and finds the best professionals.
Now she found someone who comes to the house to do X-rays.
It’s great!
To think that at the hospital, we’d wait four hours for them to bring their dinosaur machine to find out if your gastric tube was out or not.
Here, it’s a tiny device, 2 seconds on the computer… and done!
No need to take risks by going out somewhere. It’s fabulous!
The results show a small spot on the right lung.
Your pulmonologist thinks it’s more likely something viral or infectious.
She mentioned a potential link with the infected stitch (which made me even happier…)
We contacted your pediatrician to see if we need to do more tests.
We’re waiting for what’s next…
In parallel with all this, we’re trying to work normally.
It’s very easy… #sarcasm
During my breaks, I go see you, and you’re still just as beautiful!
You give me big smiles, you laugh, and you hug me around the neck.
Without that, I don’t think I’d make it. This love is beautiful.
But well, “a tired man can still go far,” my therapist told me.
So I fill myself with love, I repeat this phrase and I keep going. And your mom is doing her best too.
I love you.
Dad
PS: Thanks also to the people who continue to send us donations. Currently, costs haven’t really decreased and health insurance… But we’re working on it too!
