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On the Other Side

  • cortneylegros
  • May 8, 2023
  • 4 min read

It's been just over 2 weeks since Rémi had his big surgery.


His esophagus is now connected, and his trachea has been stitched to both the back wall of his chest and the aorta in the front.


It's been a whirlwind these last few weeks with far too many ups and downs. David and I finally hit our mental tipping point last week in PICU after an especially difficult 48 hours with Rémi.


In all of the turmoil, we forgot to stop and realize what a huge milestone we just hit! After 4 months of waiting, we finally got the surgery we needed to bring this guy home. Holy!


So what have we been up to since the last update?

Lung Infection

Rémi was intubated for 8 days, a few more days than we had originally anticipated. He developed a lung infection that initially led to a collapse in his upper right lung followed by a full collapse of his right lung the following day. He required chest physiotherapy to help clear the build up of secretions and quite a lot of deep suctioning. Once he was weaned from the ventilator settings he underwent a spontaneous breathing trial that he passed and the breathing tube was successfully removed. He required a bit of CPAP and O2 support for another few days but is fully recovered and breathing great.


The Sweetest Cry

Speaking of breathing great...Rémi now screams his face off while maintaining his oxygen saturation and his beautiful pink colour. Before his surgery even the slightest bit of fussiness sent my heart racing and the nurses to high alert. During these crying spells, his trachea would often close resulting in him loosing oxygen saturation and turning dusky or pale blue. I'm not sure if we can ever be fully confident this won't ever happen again, but I've never been so happy to hear him scream before.


Delerium

You may remember from a previous post that Rémi was particularly fiesty after they lifted his muscle relaxant. He was rather hard to sedate and burned through quite a lot of medication quickly. This was the first sign of something called delirium. It's very newly described in babies, though well documented in teens and adults. Delirium is a type of psychosis that is especially prevalent in people who are sedated for multiple days, on a mechanical ventilator and for babies who have spent their entire life in hospital.


I'm not sure I can fully describe the agony we felt watching our sweet boy experience this. I'll spare you the details, but it was absolute terror. It's not often I would recommend googling a medical condition, but a quick search of NICU delirium should give you some idea of the extent of the psychosis. We stayed by his side for 2 days straight trying to comfort him, help with his routine and coax him back to us. After a few days and a few doses of anti-psychotics, I headed back to the house for some rest at 4:30am.


CT Scan

You might think I'd have a hard time sleeping, but exhaustion took over and I passed out HARD. Not 40 minutes later I was woken by one of the worst phone calls. SickKids was calling to tell me they were taking Rémi for a CT scan immediately. His pupils were unevenly dilated causing them to suspect seizures or a brain bleed.


I heard "seizure" and trauma set in full force. David and I both shut down and somehow made it back to the hospital in complete silence. For those of you just joining in, our daughter Sylvie died of HIE, a condition that caused her to have many seizures through her short life. In all of the triggers we've experienced at the hospital, I never imagined we'd be reliving this one in vivid detail over again.


The CT ruled out both of the above mentioned scenarios and we are still trying to get to the root cause of Rémi’s pupils. Neurosurgery and Opthomology have both examined him and believe it to be something called Horner's Syndrome. We are still going through some additional follow ups to figure out our next steps.


Important Milestones

Since then, Rémi has been slowly but steadily returning to himself. He is being weaned off of his Morphine and other sedatives slowly as to regulate his withdrawal symptoms. We have keft the PICU and are back on our "home" floor. He's smiling and we even heard his first laughs. We've had some really great firsts and milestones with him these last few days. He even got to meet a few sets of grandparents after months of visitor restrictions at the hospital with covid regulations.


In all of turmoil, it's easy to forget that Rémi has accomplished so much. He's so strong and unbelievably resilient. We are thrilled to finally be on the other side of this surgery. Day by day he will get stronger and even closer to our ultimate goal: going home.



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