Ryder has had a great weekend [so far]. A fairly boring one this time, which is great here in the PICU. Over the last couple weeks he has met a lot of unofficial ICU goals: moved to a crib w/o the warmer - check. Sharing a nurse w/another kiddo - check. Moved to the back corner of the unit - check. No more NIRS monitor - check. Gaining enough weight his required lipid infusion had to get moved from a syringe to a bag because it was too much for the syringe (ok maybe that one's a stretch) - but check. All things pointing to him needing less attention and being less acutely ill. He has made some actual medical progress too- gained a little real weight, lost a little edema, and despite his last week's ICU attending moving very slowly w/his venitlator changes (which I have come to appreciate surprisingly) he has managed to get back to the point of CPAP trials (essentially doing the bipap again only with the tube still in). He did GREAT on the trial this morning. I got to hold him this afternoon again too - he got a bit freaked out and had to take a little versed nap after hour one, but I am determined not to be weepy or offended by this - he only knows what it's like to lay in his bed so the holding thing is very foreign. Plus, he really likes versed, I mean, who wouldn't?
So, tomorrow may be a big day for our little warrior. He may get extubated again. Basically other than everyone being nervous about this he is meeting all parameters he needs to meet and we probably don't know if he will "fly" off the ventilator until the tube is out. It's a funny expression - seeing if he will fly. In adults it seems so much easier to predict how they will do off the ventilator - for both kids and adults you can do a multitude of vent/pressure/volume calculations - plugging values into formulas that have been shown to predict how well they will do; you can also "trial" them w/minimal support beforehand, and check blood gas #s before and after. But the thing you miss in babies was my favorite tool...turning down the sedation and asking the person if they thought they were ready to have the tube out. A nod, especially if the person looks annoyed, or even better - angry is a really good sign that they will in fact, "fly". Ryder can't give us that kind of reassurance, unfortunately, though his sucking on a pacifier around the tube is at least really cute!
I think this is the first time I have ever been really afraid to see one of my babies fail. I know this is something that parents of older children have to think about a lot - not wanting to see your child perform poorly at something -- will they get injured? embarrased? lose an opportunity for something or confidence to try again? When you have a baby or a toddler "failures" don't normally have a place in day to day life. Little ones don't get embarrased, they don't have regrets, they get up after falling easily and are so excited by their successes that even if you can call something a failure - it is so temporary that it doesn't get a second thought from them or from you. Fall onto diapered bottom - they see the toy again and pull right back up to go after it. Can't put the diaper on the baby doll - after momentary frustration and drama they go at it again until they get it right or will ask for help which is sometimes an even bigger sign of growth. But failure to fly off the ventilator is a scary thought. He won't remember this, but we will. It's implications are not good either - tube back in, maybe trip to the cath lab to check pump function & pressures and see what is wrong, the "t" word (trach). The desperate gulping for air we saw when he got the tube out the first time was probably the most horrible thing I have seen his entire hospital stay.
So will our little guy fly tomorrow? I really hope so. I will be spending every second until it happens hoping he doesn't fail. We can only be at peace that Ryder is in good hands and there is a plan for our little warrior. He will breathe with that tube out when he is ready and I can't wait to hear him wailing about it!!
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