holding our breath

Whew! What a long week. Which apparently, as you will see, calls for a long post.

Re-intubated, rocking Gram's hat

 Before administering the Decadron, my biggest worry about it was that its potency would mean fixed lungs, but with a side of some effect we didn't want. Now that we've done it and there's "no looking back," my biggest worry is that it won't be potent enough. (Okay, I'm still worried about those side effects.) C'mon, Calder! The doctors and nurses all knew we were hesitant to okay the use of the Decadron but have also all reassured us that we made the right choice, or the only choice we had.

On room temp for awhile, so got the swaddle

On Sunday, hours after the drug had been administered and Calder had been reintubated, his body started responding, albeit slowly. His gases were getting progressively better, to the point where you could legitimately call them "good." Each time those results came in we'd anxiously await the orders, but they were always only to wean on the respiratory rate, never the pressures. Of course bigger steps would have been wonderful to see, but we could appreciate that the doctors wanted to take it slowly after the first attempt at extubation failed. Still, we tried talking with one doc about what factors they use to determine how much to wean and where, but some things got lost in communication, and we didn't come away with much better an understanding.

Our little angel :)

When we walked in Wednesday night, we were greeted by yet another new machine – this time, it was SiPAP. This wasn't too much of a surprise, given that earlier in the day the nurses had been optimistic about the progress Calder's lungs had made the last couple days, and that his primary doc, Dr. R, had returned from a couple days of leave. 

In summary, in the grand scheme in terms of how they would move him from vent to vent, it goes jet ventilator --> conventional vent --> sNIPPV ---> SiPAP --> CPAP --> nasal cannula. We've hit the first four so far, somehow or another. There are other machines, for sure, like an oscillator, but I've listed those used by the units at the two Inova hospitals we've been in. Also as an aside, we've learned that which doctor is working makes a world of difference in how our little man gets treated. When we first arrived at Fairfax and I asked the nurses how the docs made their decisions, whether they consulted with other docs, she said for the most part, whoever was on that day, specifically on our baby, made the call. They may discuss approaches during rounds but oftentimes had differing opinions. We saw this play out this time when Dr. R was anxious to extubate before he left, presumably because he knew others wouldn't, and when he returned, he was shocked (so we heard) to see that in his absence Calder had never been weaned on pressures.

SiPAP

Anyway, that night, we knew it was more wait and see. Although Kraemer and my novice assessment was that he was handling the SiPAP well, no one else last night seemed willing to verbally agree. When I made my usual 4am call early Thursday morning, he was still doing very well, but the nurse cautioned us that this may have been his honeymoon period. 

SiPAP bonnet

SiPAP helmet

He appears to have been correct. During our visit Thursday night, precisely as the nurse was pulling up his stethoscope after listening to Calders' lungs and telling us that they were sounding the best they had been, Calder's vitals crashed. His oxygen saturation dropped into the 20s, maybe the teens (I quit watching), and his heart rate into the 30s. They bagged him, which means they used a handheld device (looks like an old-school bike horn to me) to keep him breathing and another nurse called the nurse practitioner (NP) on at night to get to Room 4 stat. Not my favorite way for an evening visit to go down. NP L arrived just as he was stabilizing, checked him out and ordered X-rays and a couple more blood tests to check for infection. Though it was getting to be way past my bedtime, we decided to hang out a little longer to see the results. When the X-rays came back, the lungs were whiter than the time before, indicating that they were further collapsed than they had been yesterday. Just as we were reviewing these, Calder tanked again, and NP L summoned. This time, the NP had seen the X-rays and decided it was time to move him to something that could provide him with higher pressures. Instead of intubating, the very last resort, she ordered he be put back on sNIPPV. She suctioned deep into his sinuses and came up with a couple good-sized globs. Once he'd stabilized and gave us a really big smile, we left for home.

sNNIPV stocking cap

He'd really been doing quite well on SiPAP until that point. The nurse postulated that the reason he'd dropped was either those globs or the fact that he lost his PEEP (internal pressures) at one point and just wasn't able to take deep enough breaths on his own to recover. 

This morning the nurse told us they're trying him on SiPAP again. I had a quick conversation with Dr. D (his other primary doc, you could say), where he explained that they might be back and forth on these two machines for a little while, in fact. This is mainly because the pressure on the face that's required to maintain sufficient suction takes its toll on the skin around his nose, and the indentations it creates winds up limiting the quality of the suction you can achieve. They pull it so tight on his poor little face that I can only imagine how uncomfortable it must feel, especially on top of fragile skin that's been pulled at repeatedly already as they tape and re-tape his feeding tube to his face. But his gases this morning have been great (pH 7.37; CO2 52; H&H 43) and his Os were at 30 when we talked. His pressures are 10 over 8 (pressure in the lungs when breathes in over pressure left in the lungs when he breathes out). He's continued to advance on his feeds so that he's almost at full feeds for his weight; they'll take him off his TPN (aka baby Gatorade) tonight to see how he fairs and if all goes well, take out his PICC line, which means one less place where there is chance of infection.

So we were holding our breath. Holding our breath to see whether the drug will work its magic to the extent that he can stay off the conventional ventilator. Holding my breath to see whether the drug will do what it’s supposed to and only what it’s supposed to know. I know that some of the side effects may not be visible for days or weeks or longer. I think I may be holding my breath for another 18 years.