more crushed hopes - July 4

What a day of ups and downs - again. It all started with a 9am phone call from the nurse. Wyatt extubated himself for the second day in a row. It’s been barely 29 hours since he was reintubated yesterday and there was already swelling and irritation in his airway then. In fact, when we last saw Wyatt yesterday, we told him that he’s not allowed to pull the breathing tube out again. Well, he listened… but then he discovered how to turn his head today and managed to wiggle the tube out in a matter of seconds. To give him a chance to work for it on his own and try to avoid intubating him again in such a short time frame, the doctor tried him on CPAP. Wyatt definitely didn’t like that mask wrapped around his head either but he did ok with it while we were with him in the morning. But just a couple of hour after we left, I again received a phone call. Wyatt couldn’t hold up his oxygen saturations which started to decrease his heart rate and they had no choice but to reintubate. I wanted to punch a hole in the wall. What’s even worse, the doctor had to put in for standing order of sedation as needed, meaning if Wyatt does not stay calm enough to prevent further irritation to his airway, then they have to medically calm him down. The risk of further swelling and irritation to his airway is too high should he continue to extubate himself. Which leaves us with the big question of “What now”? While he is making slow progress by continuously breathing over the ventilator, it is clear that he still needs the ventilator and that may continue to be the case for not just weeks but possibly months or even years. The hope is there that as he gets older he’ll get stronger and will be able to progressively do more work on his own. But for now we’re stuck and we have to figure out how to proceed. I was hoping it wouldn’t have to come to this but I think we might be at a point where we have exhausted all our options. They ruled out everything else. It seems like it is some sort of a connection between his brain damage and the inability of the muscles responsible for deep breathing to work efficiently. I am terrified to even consider a tracheotomy but I do believe it’s the best solution right now. This decision cannot be about what’s more convenient for us from a care taker standpoint which is all the nurses and doctors ever talk about. This decision has to be made in the best interest for Wyatt. I’ve seen him every single day since he was born, at every stage he’s been through, with every piece of equipment available in the NICU. I know he is fighting so hard and I know he’ll continue to make progress. But from the bottom of my soul, I cannot believe that staying in the hospital is the best place for him to be anymore. If there is nothing else that can be done medically other than wait, then he needs to be home. He is struggling so much with that tube down his throat. He keeps gagging on it and vomiting, they constantly have to suction him which has a domino effect. When we saw him two days ago on the nasal canola, he was so hoarse from the constant extubation and reintubation, he couldn’t even cry. I know he’s in even more pain now. The only way to stop this cycle of him pulling the tube out and the doctor having to put it back in is to sedate him. Everything in me says that’s not the right thing to do. I don’t want Wyatt to have a tracheotomy but I think it would be best for him with a lower risk of long-term damage to his airway. I can’t tell you how much I’ve cried over this decision, it’s not a decision I ever wanted to face. But just from a developmental and psychological viewpoint, I have to believe that Wyatt would thrive better at home. He needs to be able to sleep when he wants to sleep instead of a being pocked and prodded at the hospital. He needs to have the same people taking care of him every day instead of a rotating nursing staff. He needs to have family around him who can soothe him and hold him instead of lying in a hospital crib every day. He needs to hear laughter from his brothers instead of alarms going off in every single room of the NICU. He needs to see his family more than just a couple hours a day. And with a tracheotomy, he at least has the chance of moving his head free of tape and tubes. He’d have a chance to play with toys or simply smile instead of being sedated at a hospital so his tube won’t move in his throat… I don’t have all the answers yet how home health care can work, especially with three other active kids at home. And how the heck we’ll be able to afford it, I have no clue. But every fiber of my body is telling me, that’s the right decision for Wyatt.