A better outlook

I'll be honest. Having a sick child is as awful as you can imagine. Period. I hold it together sometimes and not others. But friends matter a whole lot. This morning was hard in terms of Ari news. This afternoon was better. But throughout the day I chatted with friends online, finally saw some friends from work and got to hug some dear friends tonight when they helped out with food. A lot of people say they don't know what to do - just help us do normal life stuff. We're busy with the big stuff right now. It truly is enormously helpful when you say hi, like a post, send a message, give a hug, offer a meal, offer an errand, ask my daughter how her day was - really anything to remind us that even in hard times you are still a friend. 

Ari is better in some ways, new challenges in others, but I'll take it:)

Flipping Ari onto his tummy has helped him breathe. He was on 100% oxygen on the vent last night when he was on his back. Tonight after spending 24 hrs on his belly, he's down to 40%. His color better than yesterday.

Look how happy my boy is on his belly. He normally sleeps on his belly at least half the night. He is also totally rocking' the bedhead.

Here's the rest of the good news: 

Ari's heart looks good. His chest X-ray is even looking better, though he has some stubborn mucous plugs in his lungs that keep moving around and causing problems. His kidneys are doing great, and he is getting full level formula feeds. He's definitely tired of being sedated and has some cute wiggles, even on drugs to paralyze him (required when you are on your tummy on a vent). The doc today said that it's not unusual for kids with bad pneumonia to be on the vent for a couple of weeks (we've just ended week 1). He also said that while Ari is not making big steps forward, he's not throwing any curveballs. That doesn't mean that what he's throwing out is all good, but at least he's throwing out stuff that they've seen before and are ready to deal with.

The bad news:

Ari has 2 viral respiratory infections. Enterovirus and rhinovirus were detected in his lungs. These are generally bad common cold viruses. It is unlikely that these caused his pneumonia - most likely he got these since he's been hospitalized. This is likely why he started having trouble getting oxygen again in the last few days. 

Because of the viruses, Ari will be in isolation for a couple weeks. That means the healthcare workers have to gown and glove up when they go into take care of him. It also means Rowan won't be seeing him for a couple of weeks. For the rest of you folk, if you had plans to visit Ari soon, hold that thought for a couple of weeks. No need to get even more people sick. 

Ari's liver is a little wonky, but they think it's only temporary.

What is also helpful is that I'm finally getting a picture of the forest and not just relying on the last tree I stumble into to try and make sense of it all. Here's what I've learned:

1. Ari had septic shock. They never found any microbes in his blood or urine. They guess the shock came from the pneumonia but they don't know and will probably never know. I knew when we got to the ER he only got worse throughout the day. I didn't know he was in right heart failure by the time we got to the PICU, but I knew things were very bad. 

2.  We do not know and probably will never know what caused the pneumonia. I've been eager to learn what we could have done differently just so we would know what to avoid in the future or what warnings I could offer others, but there's nothing to learn. I've asked numerous doctors and nurses. Their answer has been consistent throughout. Bad luck. Ari's good buddy and classmate who also has Down syndrome, Jack, had the same surgery as Ari, with the same doctor, right after Ari had his surgery. I'm thrilled Jack had a completely different experience than Ari and was back at school last week without a problem. There is no way to know why Ari's course was different.

3. I don't know what to make of doctors orders, but I know the best first step in healthcare for your kid is provided by you knowing your child and following your gut. Ari was only having mild respiratory symptoms for 6 hours before we took him to the ER. Our post-surgery instructions said that a fever less than 102 should be no concern. Ari had spiked a fever of 101.3 Saturday night and his breaths and heart rate were up....but those usually go up with any fever on him...and since we took home a piece of paper that said don't call a doc unless they have a temp higher than 102 or a temp for more than 5 days, I didn't.....BUT I was watching him closely. I couldn't sleep Saturday night because I didn't like that fever. In retrospect, that fever meant everything and a few hours earlier in the ER might have made a huge difference. Doctors are great. They have saved my sons life several times in the last 10 days. But parental intuition is there for a reason too. I think that's just always good to remember.

Love to all,

Dorothy