Friday, August 12, 2016

Micah is discharged!

Micah is being discharged today!

Since Micah's ET tube extubation two weeks ago, Micah's been slowly - but surely - on the mend. Today, he's getting discharged (on oxygen) but discharged none the less!


Micah was just extubated after a couple failed, near-attempts. The recovery has been quicker than normal - but still quite a challenge! As parents, the recovery part is the hard part.


Two days after extubating, Micah was changed from CPAP (mask over the face) to a high flow nasal cannula. This was a big step, because he isn't as frustrated (by the mask) and we can hold him easily. As amazing as you imagine this to be - he really didn't want to be held very much. Poor Micah tends to ask to be held, then realizes we aren't leaving, then gets fed up with me and wants to be put back down. 
He got his chest tubes removed, which you could tell also eased his frustrations. Those are often described (by older patients who can talk) as a real nuisance. I actually helped with the removal (i.e. held Micah down). Pretty gross!

He is so thin. He's dropped weight to under 9kg (under 20 lbs). Since doctors and nurses don't know Micah from before his stay - I actually have to remind them that "this is totally not normal". Can't wait til he is chunky again - but from a nutritional point, we know it's a long road. He has to go from partial feeds, to full feeds, to dealing with throwing up (most likely as we've experienced) to finally eating solid foods and so on. Thankfully, Micah actually wants his wubanub (paci). That's an improvement from last recovery.

Oxygen (breathing support, lungs being healthy, so on) is the main story from here on out, but he's also had some on and off fevers. He's at a good level of awareness - but still so pitiful - that you start to just feel sad for him a lot more when you're sitting with him and keeping him occupied. We're hoping he keeps moving down on his rate and doesn't have any fevers. On 7/31 he's on 8 liters of oxygen (needs to get to 0. His pre-surgery oxygen at home was 2 liters).

As a dad (and starting to feel more and more useless), I did have a couple moments that I was proud of. First I sent a note to Eric Carle's website and asked if they would consider sending a gift to Micah. And they did! Second, I've made good buds with one of the fellows and actually proposed and convinced him to move down the oxygen from 8 to 6 one night.
He's been throwing up a lot. If you recall, he threw up a lot during recovery from the last surgery. Even during the first month at home, he would throw up at any moment around the clock. Just another one of those things that Laura and I have had to come to terms with.

Micah had a lung perfusion study - where they can use images to determine what percent each of the lungs are doing. Ideally, you want 50% and 50%. If you don't remember Micah's previous lung perfusion study results - that's OK - it's because it's only his second one! Pre-surgery at Stanford, he was 85% and 15% (right side doing nearly all the work). The docs told me that a 70-30 would be a great improvement to see. And, go figure, that's exactly what it was! We're thrilled that his left lung went from basically no use to doubling in a short amount of time. He got to ride a wagons to the test location. Yay wagons!
At the end of the week, Micah made it all the way to around a liter of oxygen so he got moved to the step down unit! It's called "3 west". It's kind of dark and noisy in our room (and by "kind of" I mean "very"), but we're glad to be out of the ICU.


To start off this week, we got a call from a supplier of a nebulizer equipment saying "you might be discharged in the next couple days, according to your case manager - so we're sending you equipment". Since Micah is so near to being discharged, I decided to purchase plane tickets for our return flight for 8/14. We figure sticking around till then will be fine - even if he does get discharged prior to that. I'm also nearly out of vacation days - so I decided that I'll head back to work all this week. It's obviously a major strain, but Laura is an amazing mom and able to keep up with the both kids at the hospital during the day.
Micah had a bad fever one night - so he got put on contact isolation - which meant we had a quiet room to ourselves. That was a nice change of pace! They figure that the fever and the throwups are due to - what they call - aspiration pneumonitis. This means that 1) you aspirate (or throw up) 2) something gets into your lungs 3) you get a fever. Thankfully, Micah isn't actually getting an infection - just slight fevers on and off. It's just sad that so much suffering happens simply because of the ET tube getting shoved down his throat and being stuck in there for days.
He had a barium swallow study where they found that he was aspirating on both thin and thick liquids. This means that he isn't allowed to have any water. Thankfully, they don't think it's permanent. Once he gets used to using the flap that covers his airway when he swallows - things will work like normal again. (Hopefully a month or so?)
Laura and I have spent a lot of this week talking with other parents and some of the stories that we experience are the exact same thing that they've experienced - perhaps only a week prior to us. A lot of common themes come into play, so it's nice to have folks to bond with. They just get it. All of it. If I see a dad catching throw up, mostly on his shirt and pants, I totally understand what kind of emotions he's going through. Even though Laura and I are - more or less- surrounded by other folks who are going through some of the hardest moments in their life - the inspiration I get from these really good parents is going to carry with me all my life.
Parents saying they're blessed - despite all the trouble going on. Moms and Dads staying at bedside, nearly around the clock...travelling to a strange location, having barely enough money to cover it, waiting day-over-day for a new morning, putting aside jobs and careers, but always knowing that it's what you need to do. Life is hard. Really hard. When I see the true love that a parent has for their kids - it reminds me how 1) you get through it and 2) it's all worth it.
So many parents here love a child that the secular world would rather toss away. If you ever have the thought " every life precious?" pop into your mind...come talk to me about it. I'll set you straight. 


So! Micah is getting discharged today on about .25 liters of oxygen. At this point, we're just happy that we can all be under the same roof at night. Even though I'm annoyed that we'll need some oxygen for Micah, we know he'll eventually kick it. We're moving our flight - probably to next weekend - and sticking around NorCal for a bit. Micah has a follow up appointment on Thursday, the 18th.