How we got home

Sunday night things were looking bleak. The weekend attending had been a non-presence all weekend and we had a rotation of fellows and residents taking care of Jaisal. Sunday night about an hour and a half before bedtime, I asked our nurse to page a doctor so we could discuss the plan for the evening, in the hopes that we not prolong our stay just over the home bipap machine. I knew the PICU had been crazy all day, so I hoped I was giving the doctors enough lead time to come talk to us before Jaisal went to sleep, particularly considering that since we were on day 3 of "testing," a plan of action should already be in place.

I was so wrong.

After the nurse paged the doctors multiple times, the resident calls back  right as Jaisal is ready to fall asleep and says that we are going to try Jaisal on 10 over 5 settings and the fellow would come in and observe. The minute I heard that, I lost my s#!t, since we'd started the past 2 nights the exact same way with NO results. I was not going to waste another night of evaluation time, particularly when not one doctor took time ALL day to talk to us about what we should do.

Additionally the home machine we needed to test was set at higher settings since those lower ones had failed to achieve the desired outcome, twice. Kirk and I hooked Jaisal up to the hospital bipap machine and let the poor kid sleep while the doctors got their act together.

Eventually the fellow comes in and says he wants to try the 10 over 5 settings after giving a dose of Afrin because they believe Jaisal may have nasal inflammation causing the problems with the bipap machine. Nice. It would have been great if your resident said that earlier or anyone came to talk to us at any time during the day about this plan and the medication.

The fellow explained that we'd use the Afrin and then observe Jaisal for a few hours. If that didn't work we'd increase the machine settings. Well we gave Jaisal the Afrin, and it didn't seem to work within the first half hour. The fellow then increased the settings, which did seem to work. But now we didn't know which trick made it work or was it a combination of both changes. More frustration for me.

By morning when the liver fellow, Dr. O, came around, he got an earful about how we needed to get out of the hospital or at the very least out of the PICU. We couldn't keep Jaisal contained in his room, and being that it's winter at least half the people in the PICU seemed to have respiratory ailments. It was not a safe place for my immune-compromised son with his own respiratory issues to be wandering. All I can say is that Dr. O listened and passed along my message to the liver attending for the week, who also happens to be the head of the transplant program.

During rounds on Monday morning, the PICU team was still waffling as to what to do. Because they failed to execute their own plan properly last night, they wanted to put Jaisal on an Afrin and steroid regimen for nasal inflammation and get an ENT consult to check for inflammation or structural narrowing of Jaisal's nasal passages.

I asked about the side effects of the drug therapy because Jaisal's is on a lot of strong meds and will be for his whole life, and I want to avoid additional meds unless absolutely necessary. I proposed that overnight we try Jaisal on the higher settings and see if that is enough and if it isn't, administer the meds when he woke up to eat. The PICU doctors acquiesced, but not after looking at me crazy as to why I wouldn't use the drugs as a back-up just in case. (Note to everyone, the drugs absolutely were not needed as proved by my conservative non over prescribing approach.)

Dr. A asked about the value of the ENT consult and was told that it would not change their treatment, but could provide additional information. That was enough for Dr. A. She said we should have one more night of observation and then be discharged. She specifically said that the bipap machine seems to be a new treatment for an old problem since she's seen all kinds of kids with post-transplant diaphragm issues and never has any gone home with bipap. She acknowledged that this plan couldn't hurt and might prevent a bout of pneumonia. Dr. A thinks we'd only need bipap for a couple weeks, while the PICU attending was thinking 3 to 6 months. I'm betting on a month.

All I know is that without Dr. A, I'm not sure we would have gotten out on Tuesday. Without her, I am sure I would have become the belligerent parent. Thank you Dr. A for getting us home and saving my sanity!