Ryder was reintubated late this morning. No crash and burn. No shock. No progressive respiratory failure, however he has now been on bipap for 5 days with minimal progress except that he can now suck on his pacifier a little more aggressively that he could day 1. Cute, admittedly. But cute does not make you any less acidotic. The new ICU team plan is to let him rest and grow for a couple of weeks while using the NAVA catheter with the endotracheal tube for ventilator weaning. It would be a lie if I said the new ICU plan wasn't a little disappointing or frustrating, or that I wasn't a little sad, but if you could see his little torn up cheeks or hear his sad little weak cry in person you would definitely be on board for the re-intubation. I know I was when we were told they would be willing to give it one more day on the bipap mask. Sometimes you have to take 1 step back to take two steps forward. Maybe in 2 weeks he will be on all enteral (stomach) feeds AND be strong enough to get off the ventilator. We'll see - we don't make the plans; we just have to trust that it will work out the way it is supposed to.
It's a good day to take a even bigger step back.
On October 3rd we were told Ryder had hypoplastic left heart. Two weeks later with his first fetal ECHO we found out he had an intact atrial septum; making his HLHS the most lethal kind, with the worst overall outcomes. We had to choose whether or not we wanted to keep going knowing he would have a really rough road if he made it...
If you would have asked us back then if we would choose the same way knowing we would still be sitting in the PICU at 5 weeks, 6 days...baby boy still on the ventilator, still on milrinone and TPN, still waiting...still not knowing how best to work a schedule between home and hospital, still spending at least 20 minutes a day trying to figure out if the last time you parked you left your car in red rocket or yellow submarine, still wondering why the waiting room offers the same free granola bars that it charges a dollar for in the adjacent vending machine but no splenda (seriously - SPLENDA people!!)...would we have chosen the same way? Would it still be worth the fight?
Absolutely.
And besides, the cafeteria makes an awesome pancake. Only 200 calories. Is that really true? Maybe not...but isn't this whole life about what you choose to believe? :)
I'll be praying for your kiddo, Jess.
ReplyDelete-Ben Chen
If you take one step back and two steps forward enough times, Jessi, you're doing one helluva cha-cha. AND moving forward, to boot. Just keep on fighting (and dancing) and know that there are a lot of people out here praying for you. Love you guys.
ReplyDeleteFollowing your journey, praying for you. Your little man is adorable.
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