Hello, my little potato,
Today, I’m writing to share the somewhat distressing events we’re currently experiencing.
As I’ve said many times before, we’re having trouble getting you to eat.
That doesn’t mean you don’t want to eat, but you’re not eating enough.
We don’t really know if it’s related to teething, if it’s behavioral, or if you have pain in your esophagus, or maybe something else?
The problem is that, essentially, your condition, bronchiolitis obliterans, causes you to use more energy than a healthy child.
This weekend, for the first time in a long time, you vomited.
The last time was when you had the tube without the pump, and we had asked the insurance for help, and they responded with a polite refusal from their legal department.
This time you had eaten, we gave you a medication (iron), and it made you vomit.
Strangely, it was also the first time I had gone to see friends since we got back from the hospital, and it was precisely at that moment that you vomited.
So you left Mom and the person helping her in a very stressful situation. You couldn’t breathe anymore. The speech therapist came. He suctioned you, and everything went well…
Today we weighed you, and you’ve lost weight. If we look at the complete curve since you had the tube removed, your weight isn’t increasing. You’re stagnating. And that raises a lot of questions for us.
The options are clear:
1- Either you eat enough and your weight goes up,
2- Or you go back to having a nasogastric tube,
3- Or we move to a gastrostomy.
Your pediatrician is leaning towards the third option, and it’s not the first time we’ve heard about it.
For those who don’t know, a gastrostomy is a hole in the abdomen directly connected to the stomach, with a tube through which the child is fed.
Your mom and I would really like to avoid that.
We’ll do it if there’s no other choice.
The problem with a gastrostomy is that there are risks of infection, at least one hospital stay, and daily care.
There are two narratives (I’m exaggerating a bit):
That of the doctors who say it’s wonderful.
And that of the parents who say it’s not so wonderful…
No one wants their child to have a hole in their belly to be fed….
But at the same time, we know that if you don’t eat and you catch the flu or any infection, it will be even worse. The slightest illness becomes a huge problem as soon as you refuse to eat.
Today, I admit I’m depressed. And it constantly brings me back to all the mistakes and oversights of the past. The hatred returns, so I release it by going for a run.
I’m truly sorry, son. I don’t know what the future will look like. I wholeheartedly hope it will be beautiful. But I’m sorry for everything you have to go through.
Despite everything, we still had a nice moment this weekend. I’m trying to find some optimism…
Sunday, it was just the three of us.
And yesterday, I let you mix for the first time. Dad used to be a DJ, so I got out the turntables I had kept. We mixed together, and you love music and clapping your hands.
Your mom and I are going to give ourselves a little time.
It’s not an immediate emergency, but it’s a decision we need to think about seriously and quickly.
This week, we’re going to do everything we can to try and get you to gain weight.
We’re going to change how we do things, adapt again, and do our best.
I love you
Dad
