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.

Disney Trip

Postponed.

The new wheelchair is ready to go places, but...

Jojo is still sick.

He is not ready to come off the bipap yet, and treatments are still easier with two people doing them than just one. Friday night was not bad. Saturday, Brady went to work and there were rough times during the day when I wished he were home. Saturday night was worse than the night before. Brady stayed home on Sunday. The three of us holed up in our bedroom the whole day, giving Jojo treatments round the clock. Last night was a little better than the night before. Today is a little better, so far. But Jojo's breath sounds are still squeaky and diminished on both upper lobes. His O2 sat still drops into low 90s/upper 80s without the bipap on. His pediatrician called in a stronger antibiotics than the 3-day dose Jojo just completed. I'm thinking RSV? HMV? Flu? But we are staying put in the house and doing the best we can. I also decided to take the week off. Two is better than one when Jojo is sick.

As for Disney...Mickey and company will just have to wait. Maybe it's just not the right time for Jojo to go. The weather forecast predicted chances for rain at Disney on the days we would have been there. And there are still a lot of illnesses around. So, we'll see Disney World in due time.

Up In the Air

You ever had a day when you could just scream and throw a tantrum? I did this morning. I didn't scream, but Jojo's caregiver saw a side of me that I wish would just stay hidden in a locked box. Without going into details, it's one of those days when there's just not enough hours or enough of me to do the things I need to do (some of them not related to Jojo). I guess I did scream, silently, "Please God, I just need a break!" And He sure gave me one.

At around noon, Ms. Frances and I hauled Jojo to Alexandria to pick up his new manual wheelchair. But, we had to turn around because I forgot the suction machine! Yup, that's our life alright, everything is rushed and last-minute. We applied/ordered a manual wheelchair in early January with the hope that we would get it in time for our trip to Disney World. And we did...we got it today and we leave on Monday. But, not enough time to make sure that it is the right fit for Jojo and that he will be comfortable in it for the long drive and for the whole trip.

And so we got to our appointment. Brady left work to meet us there. We saw the wheelchair with its grasshopper green color frame that Jojo decided on. It looked impressive, the back almost lay flat if you reclined and tilted it all the way. But in this almost-flat position, the chair is really low and therefore the handle/push-bar in the back is also low. I am 5'1'' and I just barely grab the handle. Brady is much taller than I and has back problems, so I don't think I'd want him to push this chair too much. Anyway, Jojo was put in and out of the chair a few times to make adjustments to the chair. In the end, he just did not look comfortable or satisfied with the wheelchair. Now, we never expected the wheelchair to be a perfect fit the moment we got it. It took major adjustments before we got Jojo's power chair the way we wanted it, and we LOVE Jojo's power chair. I'm sure we can make this new wheelchair just the perfect fit for Jojo, given the time. But we are SUPPOSED to leave this Monday.......................

Supposed to leave on Monday. Here's the "break" that I asked for this morning. During the wheelchair-fitting appointment Brady commented that Jojo was red in the face and felt warm. His heart rate was also up a bit. OMG. Here we go again. By the time we got home around 4pm, Jojo had 103 temp! He was fine all morning. Chatty. Satting great in the high 90's. Heart rate in the normal range. And at 4PM he was hot, still chatty, heart rate going into 170, still playing on his computer, lung sounds not bad at all. I did the "sick protocol" of Ibuprofen, cough assist, bipap, breathing treatment, continuous feed, call-Daddy-to-come-home-because-Mom-is-worried and scared. Nana came. And I took my break, which was, forsake-everything-else-and-sit-by-my-boy-and-watch-him.

Bring the power chair or the manual chair? Disney trip? All up in the air.

Short Post

A young boy with SMA, whom I had been following for a long time now, passed away tonight. His name was Andrew W. http://caringbridge.org/visit/babyandrew And another baby girl also passed away last Sunday. When will it stop? On the one hand, I would like to get to know each and every SMA child and their family; but on the other hand, when one passes away, it is so sad and scary. I'm afraid for my son. And I cannot wait until everyone around us stop sneezing, coughing and being sick. Oh, by the way, Brady and I both have a cold right now. Four more days before we drive to Florida...

A Better Weekend

We enjoyed a really nice day Sunday. It was a little chilly, but warm out in the sun. With two shirts and his Daddy's wool socks on, Jojo was ready to look for signs of spring.

With Jojo sitting reclined in his wheelchair, he had a good view of the sky overhead and of the planes crisscrossing and leaving vapor trails behind.

No pretty signs of spring yet: just clover and dandelion seedheads. Jojo whispered a wish as he tried to blow at the seeds. He wished for...a four-leaf clover.

Jojo: Did you find a four-leaf clover, Mommy?
Me: No.

Jojo: Can I taste this?

Me: No.

Jojo: I had a great day.

Me: Really?

Jojo: Yeah, I got to taste some soup today.

Me: That's it?

Jojo: Well, I played pretend that I had my own show. Then Nana played Rocky the robot truck with me.

Me: And you read for Nana.

Jojo: That was a long book. Then GinGin and DeeDee Allen came.

The vapor trails overhead made some geometric lines as we headed back to the house. Then Jojo ended his day by watching Kangaroo Jack on Cartoon Network.