(Disclaimer: I was extremely tired on Monday and struggled to follow everything so please don't quote me on anything included in this post or use it as a reference of any sort. Just trying to keep some semblance of a record of events.)
A HUGE thanks to Tania Hatch today for watching the kids. When James and I got home, she had built a fort in the living room with the dining chairs and all the bean bags were under it and both girls had their hair done so cutely! Haven't had any luck with Trevy letting me do her hair for several days now. Hard to take it out, but you get to the point where the crusties have to go!
Tania even went the extra mile and showed up 15 minutes early so James and I were right on time for rounds. Cassie was there again and we had a few minutes to chat with her before they called us out to talk with the doctors. Timmy's belly was still looking a bit distended, although it was definitely softer. Cassie was glad to hear that Timmy had actually pooped overnight. What she had seen the day before was iffy so it was nice to have a definite on his first bowel movement.
Initially, Timmy had been scheduled to see Dr. Parry for a microlaryngoscopy and extubation last Friday. However, Dr. Cosentino (and I think most of us) felt that we needed to put the procedure off for a few more days to allow Timmy to recover from one surgery before undergoing another. Even Monday morning, his belly was still pretty distended and Cassie, James and I were all concerned that Timmy wouldn't have the drive to inhale against the distention and, I'm sure, discomfort in his belly. Nobody wants to see Timmy fail again and I think rushing to extubate would set him up for a repeat. Not to mention that I had seen him ride the vent a number of times since surgery. (Prior to, he was breathing a lot on his own and ready to go.) Dr. Parry had had Timmy on his schedule for Monday but the NICU doctors all agreed that we should cancel that appointment. Such a frustrating feeling to want Timmy extubated yet not want him extubated. At least the abdominal surgery is over and done with and he is doing well so there should be no reason to reintubate.
Timmy was also off antibiotics. After the sepsis scare and then antibiotics for surgery, that is another good step in the right direction. As far as feedings go, we were still awaiting the surgeons to give the all-clear and Monday was another no-go. Thank goodness for TPN. Just hard to watch Timmy show hunger signs at 11 and not be able to give him anything.
Vent settings down again.
***
Which made the phone call we received later that day at 1:00 all the more strange. One of the anesthesiology residents was the lucky one who got to give us the call to obtain our consent for surgery the following day. We had only been home from rounds an hour or so and were in shock to hear that we were suddenly on for surgery again. Hadn't we just established that Timmy wasn't ready and we should wait until later on in the week? James and I each had an extension and I think we might have scared the poor resident a bit. We were nice, but not even remotely willing to give consent. We told him what we had talked about that morning and he said he would check into things. Very nice guy. Hope we didn't come off wrong.
At 6pm, Dr. Parry himself called us. Truly, it means so much to get a call directly from the doctor himself and not through the grapevine. Once again, James and I each grabbed a phone. Dr. Parry was really eager to get Timmy off the ventilator. Every day that the tube is in, it has the chance to rub more area raw and cause more scarring of the trachea and vocal cords so he was in favor of getting Timmy down to the OR the following afternoon; however, he did understand our concern over Timmy's belly and said that that is definitely a consideration and he won't rush it if Timmy truly isn't ready.
He explained to us the procedure that he would use to extubate Timmy. Basically, he is planning to pull the tube and use a balloon to help retract the tissues to open up his airway. If necessary, he will laser some of the granulation (scar) tissue as well. (Just a note: James asked about curettage - no. Apparently the use of blades creates more inflammation and would, therefore, not help the situation.) I asked how Timmy had looked to him the Saturday he saw him, since we had never met Dr. Parry, hadn't been able to be there and only got the report from the nurses. He said that Timmy looked better than he thought he would. Huge relief. Dr. Parry sounds pretty optimistic that he can get Timmy extubated, although it may take more than one trip down to the OR. We are okay with that. Also very okay with Dr. Parry wanting to avoid a tracheostomy if at all possible. Very frustrated that it's even a thought at this point. Our little boy was born with perfect airways!
I couldn't bring myself to outright ask if someone had made a big mistake with the 4.0 tube, but Dr. Parry pretty well implied that that big tube is what put us where we are now. Please keep Timmy in your prayers that he can work his miracles and get Timmy off the vent next week without too much in the way of invasive procedures and without multiple trips to the operating room!
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