Day 115 at the hospital
21h11
Gabriel spent the night with Amelia and his mom.
The night was a bit restless: Gabriel was tired and had a pronounced diaphragmatic draught. This morning and until midday, this was still the case.
Last Saturday, a physiotherapist asked me about the pressure on Gabriel’s respirator.
At the time, I replied that I didn’t know, that it wasn’t my role and that it must be marked in their records! She told me no, and I immediately contacted the head physiotherapist to inform her of the situation.
This morning, the boss told me that she hadn’t seen my message until this morning (Saturday, Sunday, Monday, Tuesday, Wednesday…), which frankly annoyed me.
I told him I never wanted to hear another “I don’t know” in this hospital…
Earlier, we asked Gabriel’s weight.
It had been two months since any weighing had been done in front of us, even though medicines are sometimes dosed according to weight.
When I asked the last time it had been weighed, the answer was the same: “I don’t know”.
Finally a scale was found, and the result: Gabriel had gained 20% in weight since the last measurement. He now weighs 5.4 kg. Great news!
The doctor then came by. Concerning the weight, he told me that he already knew it for the medication.
I have the distinct impression that they estimate an average weight without actually weighing the children (pure assumption on my part, as I’m certain that he hasn’t been weighed since leaving the ITU).
We were also able to discuss the comments made by the various pneumologists and physiotherapists we had met the day before.
We explained that our aim was not to confront them, but to create together a real team of excellence to accompany Gabriel.
We also reminded him that for something as basic as bronchiolitis, they haven’t really succeeded, given his pathology today…
So, obviously, for something as rare and complex as bronchiolitis obliterans, we had some fears….
Several changes have already been implemented:
- Less aerosols and Pulmicort
- Less Aerolin
- Aspiration only if necessary (he had it up to three times a day from the start, and it’s a very aggressive procedure)
- A Philips Trilogy Evo machine should be arriving soon to help with his breathing.
Regarding this machine, we were told that it would take time, without giving a precise deadline.
The famous “we don’t know when” that makes your ears bleed.
So I spent two hours of my afternoon looking for this machine all over Brazil, getting quotes (even with a plane ticket to pick it up) and then I sent the whole thing to the hospital.
No answer yet…
This machine represents a small step backwards in Gabriel’s respiratory support. But from what we understand, it’s actually an excellent way of encouraging his development and the expansion of his lungs.
It’s better to use it now rather than later, to help him avoid overexertion.
At the same time, the agency managing the apartment continues to prepare the property. We’ve explained our situation to them, and they’re coordinating all the tradesmen to repair the things broken by the previous landlord.
Perhaps we’ll be able to settle in by the end of the week?
Finally, we’re still looking for a foster home for our cat Pompom.
We hope to get him back one day, but at the moment, with Gabriel’s situation, that’s not possible.
On that note, I’m going to start my working day with a cup of coffee and a 90’s house playlist to relax me.
Good night, world. Tomorrow is another day.
