Groundhog Day


This post has nothing to do with a groundhog.  Although I am reminded a little bit of the movie with Bill Murray and Andie MacDowell.

Joseph had his 1st RSV illness when he was barely 3 months old.
See the smile on Brady's face?
That was a time in our lives when SMA was still unheard of,
when RSV was just a two-night stay in a regular Pedi floor.



RSV 2nd time around (officially at least, since Joseph tested negative for RSV
during his last PICU stay in 2010, although Brady and I were pretty sure
that he had it).  This time around, instead of a 48-hour hospital stay, how about
a 14-day illness, including a 10-day stay in PICU.

But, I may be getting ahead of myself and I surely hope that I don't jinx us.  It's just that I am so ready to sleep all stretched out on my bed instead of this:

Of course, Joseph will dictate our decision on whether to really be discharged Friday or the next day.  He sure showed signs of being almost back to his baseline: off of bipap for most of his waking hours today; no afternoon nap; O2 sat ranging from 96 to 100% without bipap; actively playing on his computer; extremely chatty; acting impatiently when his videos or games take a long time to load (Internet is not optimal in his hospital); and bargaining to keep on playing long after his Daddy has told him to turn off the computer. 



The "dragon" is back.



LOL.  Washing the hair without water.

Hair is finally clean.  No more itching.

Time for bed.  Hopefully our last night in PICU.

We'll see how tomorrow goes.

PICU Day 7

Still updating from the PICU. Jojo is getting closer to his baseline. He has not taken any naps during the past two days, he watches TV and plays on the computer. His lungs are still junky, but he now responds better to the cough assist. The only thing is that he still does not want to be off his bipap and his O2 sat still dips to 94% or lower without the bipap. Yesterday his chest x-ray looked so much better, prompting the intensivist to suggest discharge for today. Well, Brady and I said no because we would like him to be off the bipap when we go home. So, it's pretty much up to us when Jojo will go home; that's how it's been during our past hospital stays. We are lucky that the intensivist has the knowledge about SMA and the care it entails, and that he trusts us with our judgment and decision when it comes to Jojo. We've been here a week, and therefore our intensivist has to take his days off and won't be back until Saturday. The physician who will cover for him is a pulmonologist; someone we saw once or twice before in the MDA Clinic about two years ago. We welcomed the opportunity to hear what he had to say about Jojo. So later this afternoon, the pulmo guy came and talked about sleep studies and so on and so forth, ending with the judgment that SMA kids will eventually have to move on to ventilators. That's fine and dandy, because we are interested in switching Jojo to a ventilator non-invasively. The guy has never heard of it. He's only familiar with ventilator via tracheostomy. So the whole thing sort of upset me. One, because why do we, as parents of the patient, have to be the one to educate the physicians on interventions that they are supposed to be the specialists of? Two, because I do not want to be reminded that my child has a progressive condition/disease with an inevitable result. Don't remind me of this, help me to do something about it.

Anyway, Jojo is having his sleep study right now. I'm curious to see what the results will be. Looking at his stats on the monitor tonight, he should be home. But we'll see how he does tomorrow. Maybe it's unreasonable to expect him to be off bipap during the day (as was his baseline) so soon after this illness. Brady and I both think that this is the worst illness he's ever had, even after the flu he had two years ago or the countless "pneumonia" or right upper lobe atelectasis he had in the past. We asked Jojo tonight if he was ready to go home and he said, "Not yet." As always, we'll follow his lead.

PICU Day 4

It was a slightly better day today, with Jojo actually playing on the computer for about two hours. He was pooped after that and he asked to sleep at around 7pm. I can't say that he's so much better because he was really struggling to breathe from about 10AM to 2pm. His lungs sounded so junky and tight. Towards late afternoon, stuff became more loose and he was requiring more suctioning. Thank God! At least the stuff is beginning to break up.

I hope things are looking up from now on.

PICU Day 3

I can't say that Jojo is better, although he is not any worse. He sleeps a lot and only wakes up for his respiratory treatments. He doesn't ask to watch TV or play on the computer when he's awake; he just stares at the ceiling. His secretions are so thick that even the cough assist does not always succeed in expelling them out. He responds better to the vest and postural drainage with chest percussion. He knows he is sick and that he has to stay in the hospital for now. I took these videos after we woke him up for his 11pm breathing treatment so we could do the vest, etc. He's not in a good mood.

We are sooooooo ready to get our boy back.

Sick Day 6 : PICU Day 1

We're back to the old familiar PICU, Jojo's "home" away from home. It's been two years since the last time he was here. He had the flu at that time and stayed less than two weeks, I think. This time, he had to take the ambulance to the hospital. Funny, this illness: one moment he'd be almost happy and talking, the next moment he'd be struggling to breathe with O2 staying in the 80's-low 90's and HR into 160-170's. This apparently coincided with spikes in his temperature.

By the time he got to the hospital, he looked fine and was talking to the intensivist. RSV, flu, mycoplasm all negative. WBC's are within normal limits; keeping in mind that he already completed a 3-day course of antibiotic and started on a different med. What about HMV? Surprisingly, our intensivist is not familiar with it. And the ebb and flow of being well and sick continued through the day with temp going up to 103, but currently being controlled by Ibuprofen. So, we're here. And Jojo doesn't mind it at all, seeing all the familiar faces and most of them knowing him and HIS Dad. I just hope we don't stay too long.