This past week held a lot of big changes for Jackson. To say we were surprised by the outcome this week would be wrong – this is something we have toyed with since only minutes after he was born. But, I would be lying to say that we were hoping for a different outcome.
On Wednesday, after months of being intubated and breathing with the assistance of a breathing tube, we decided to give Jackson one last shot at breathing on his own. One of the main characteristics of Pierre Robin Sequence is a small jaw which, over time, often grows and helps correct the breathing problem faced by a lot of PRS kids. Jackson had been growing so well on his tube and it had been a while since he had to breathe on his own, so we thought it was only fair to pull the tube out – in a controlled fashion, promise – and see how he did.
He did great. He did exactly what he needed to do. He was so strong.
He officially made it 19 minutes without the breathing tube. ‘But, wait’, you’re thinking, ‘isn’t that a failure? How is that exactly what he needed to do?’
That 19 minutes was gut wrenching. We expected Jackson to have some trouble figuring out his new breathing pattern, but right when the tube came out, the problems started. He had ‘retractions’ – strong pulling on the sides of his stomach when he breathed – and was making a great deal of noise with every breath he took. He was having a terrible time calming down and, even when he did, he would panic again at his lack of oxygen and inability to get a full breath. The final straw came when his sweet, soft spoken ENT simply ‘pulled’ his jaw forward with his fingers, almost stopping the sound coming from his breathing and, with a very gentle smile said ‘this is what we we’re worried about’. The fact that the sound stopped when his jaw came forward meant that it would stop when his jaw was big enough, but that it wasn’t big enough yet. He would need a tracheostomy to breathe safely until he was.
Jackson showed us so clearly in those 19 minutes exactly what he needed, without having to say a word.
One of my fears going into our extubation was that the outcome would be uncertain. We would pull the tube, change his support, and he would be alright. Not good, not bad. I was afraid he would sit in this terrible in between where Zach and I wouldn’t agree with the doctors or the doctors wouldn’t agree with each other or, worse yet, Zach and I wouldn’t agree with each other.
That definitely wasn’t the case.
While this isn’t the outcome we were looking for, this was the best option for Jackson and will help him start moving forward and moving toward home. No one wants to see their child with a tracheostomy, but if the choice is between trach and suffering, between resting and struggling, between breathing and not breathing, there is absolutely no question.
We were lucky enough to have a spot open up for Jackson’s surgery the same day as extubation and, on Wednesday, we became the proud owners of a fresh trach, complete with five days of sedation, five days of precautions, five days of healing. After those five days, though, we are ready to move forward. This trach will allow Jackson to be awake without heavy sedation, to start interacting with us and his care team, to start being what he should be – a baby.
It also means we can do something we haven’t done in weeks – hold our son. It has been over 11 weeks since I have held Jackson and even longer for Zach. To say we are excited is an understatement and I can’t wait to update everyone so soon on how wonderful it truly is.
Until then, we are so proud of Jackson. You’re doing great, Moose. We’ll snuggle soon.