Thursday night into Friday was restless.
Your mom and I try to sleep together between midnight and 3 AM.
We pay to always have someone by your side, to make sure everything is okay.
And luckily, that person was there.
At 11:30 PM, you started pulling out your gastric tube through your nose. Despite the fastenings (which need to be changed). The person watching over you came to wake us up in a panic. We tried to put a piece of tape to prevent it from moving further, then we tried to go back to sleep.
At 2:30 AM, she called me because you had no oxygen and your saturation was at 88. She didn’t understand why. She couldn’t get it back up because the flow meter wasn’t working anymore. Of course, the bottle was closed.
It seems the person who changed the oxygen bottle the day before left the valve too close to the closed position, and over time it closed by itself. Because the oxygen was working the evening before we went to sleep.
And with your condition, your saturation drops at night because you breathe less deeply while sleeping.
It’s on nights like these that we realize how lucky we are, how important it is to have someone watching over you.
At 5 AM, we received a message from the person who takes care of you during the day. She told us she wouldn’t be coming today because she’s sick. She hadn’t come on Monday either due to another personal issue.
I’ll tell you frankly what crosses my mind at that moment:
First thought: this is going to be a mess, I won’t be able to work, and I don’t know how we’re going to pay everyone.
Second thought: it’s okay, at least I get to spend the day with you. We’re going to enjoy it. Tomorrow we could be gone, so we might as well enjoy today.
Son, I often tell myself that we are incredibly lucky to have you with us.
Sometimes I cry looking at you, because I realize this blessing and feel immense gratitude.
We’ve come back from the brink of death, and now we have life ahead of us.
We must enjoy it despite the difficulties.
Every problem has a solution.
Death, however, has none.
We have received a gift, and we must cherish it.
Yesterday at 6 AM, you went back in an ambulance to have a blood test at a lab.
You are still in the process of weaning off corticosteroids, and we need to regularly check your cortisol levels.
For the rest of the day, you mostly stayed with your mom. I came to take care of you every three hours.
Last night was a bit complicated.
As I explained, you pulled your tube out a few centimeters yesterday.
The GI specialist had told us it was already borderline on the September 22 X-ray and that we needed to be careful.
We should take you to have it changed, but the GI specialist canceled.
I won’t lie to you. I’m a huge wimp when it comes to your tube. It traumatizes me.
I remember all the times they removed and reinserted it at the hospital. It was torture.
And when I see the condition of the tube here at home after almost two months, whereas in the hospital room you couldn’t keep it in for more than two weeks, I tell myself they just don’t know how to manage a tube there.
Anyway. Last night, we had to put your tube back in correctly.
We thought about taking you to the hospital, but the idea of bringing you back to a nest of bacteria surrounded by people pressured by time and profitability is not appealing.
On the doctor’s advice, we decided to do it ourselves.
The problem is, I’m the biggest wimp of the century when it comes to this, and your mom, when she gets started, thinks we’ll guess her intentions telepathically.
Suffice it to say, the combination isn’t ideal.
So we wait for you to fall asleep.
It’s dark. We can’t speak loudly.
Your mom prepares a pair of scissors, some spare dressings, and we go into “surgical operation” mode.
Securing your tube is quite an assembly:
- First, a two-part adhesive on your cheeks, which supports both the oxygen catheter and the tube.
- Then another type of adhesive that we stick over it to secure the tubes, a real sandwich to prevent any movement.
- And finally, a fastening placed on your nose, wrapped around the tube to prevent it from coming out.
Yesterday, this last fastening was almost broken from wear and tear.
The others were half-peeled off.
A mess.
And before putting all that back on, you first have to manage to remove the old one.
Even when it’s half-peeled off, everything is tangled around the tubes and still sticks in some places.
Your mom tried to remove the dressings one by one while you were sleeping, but you woke up every time.
When your mom finally managed to remove everything, it was time for me to push the tube back in a few millimeters.
You made a strange noise, then you woke up.
The stress suddenly escalated.
In these situations, your mom and I communicate very poorly.
I don’t know if it’s her fault or mine.
You’ll learn that in life, women “are always right,” but what’s certain is that I’m such a wimp with this tube that I can’t give any useful advice.
I’m just useless and stressed.
In the end, your mom did an incredible job again.
Thanks to her, the fastening is clean, stable, and we should be able to manage for a while before having to go back to the hospital.
We’re at least waiting for the results of your genetic test to find out if you have an immunity problem.
It’s 4:40 AM and you’re still asleep. I hope everything goes well today.
I love you, son.
Dad
