Home Is Where the Comfy Bed Is (For Dad & Mom)

Weaning off the bipap, Thursday morning - Max time of one hour

Mad dash to get home this morning.

Van was parked illegally with threat of being towed.

Jojo surprisingly returned to being off the bipap for the ride home and all day today, except for two short breaks while he had the breathing treatment and the vest. In his own words, " I have more air when I'm on the bipap (while having his vest treatment)."

Octoboy getting ready for bed tonight.

We are very happy to be back home with our little boy. It's so nice to have our own bathroom, own bed and the luxury of walking away to another part of the house when one of us needs a break. Jojo was expecting a welcome party when we got home, but it was just one of our neighbors with his dog who came up to us as we were unloading. Nana came afterwards. Then Austin came home at the end of the day. Brady will return to work tomorrow. Austin has his baseball tournament. Jojo and Mommy will be relaxing at home this weekend. It's like the last two weeks never happened. I hope we filled the quota of Jojo's hospital stay for a long time.

PICU Day 8

Jojo got a little upset tonight. Not because we're still in PICU or on the flipside, because we might go home in the next two days. Not because we're about to take his bipap off again for cough assist session or because we couldn't understand what he was saying. He was sad because Lacey Brown was voted off the American Idol. Jojo liked Lacey's hair and her voice and believed like we all did, that there were three or four other people who deserved to be voted off before her. Oh well, Jojo and Lacey will survive.

We are planning to be home before the weekend. If the new g-tube comes in tomorrow and gets placed on Jojo, we may decide to leave tomorrow. The pulmonologist, however, talked about seeing us on Friday. He said Jojo did great on his sleep study, and that the bipap setting we have right now is good. We were just concerned about his CO2 level on bipap, but the recent capillary blood gas test result was within normal limits. Jojo told his Daddy tonight that he's ready to go home. We're just going to have to slowly wean him off the bipap during the day to help him return to his baseline. Hopefully, our next update will be from home.

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.

Day 5 of Being Sick

It's been so long that Jojo had been this sick. It's so hard to see your child struggle to breathe and you just wish you could switch places with him. Last night until past midnight was rough. And again this morning to noon and just after sundown. Scared, panicked, very concerned, that's how Brady and I feel right now. I really hope that this is the worst it could get, and that the worst is almost over. I just really, really want my boy back to his baseline.