William and His Hair Say "Hi, Everybody!"

Regardless of what's going on in William's life, he still continues to have the most awesome hair ever. Especially in the morning. This bed hair = Legendary.

Happy National Bed Hair Day*!
(*That's totally a thing, probably.)

His crazy mop aside, things have been a little challenging since he's been home (hence the lack of blog updates).

He has a lot more equipment and supplies, which have meant we had to reorganize the boys' room and lots of other spaces in the house. Which is not really a bad thing. For the most part, it's forcing us to do some cleaning out that we've needed to do for some time.

Overall, William is getting stronger. Not as quickly as we'd hoped, but we'll take what we can get.

His ups and downs with his oxygen levels have been a challenge. He's still adapting to the trach, which is no small task since he's learning how to breath a different way than he's used to. I've been told it can take months.

Adapting to the vent isn't easy either. It helps him rest and breathe more easily at night, but only after he settles into it. He often takes an hour or more after we put him on it in bed before he relaxes and goes to sleep.

William qualified for a lot more home health nursing hours than before, and part of that includes a night nurse (rather, a series of night nurses), which is great when we have nurses who know how to balance his respiratory needs with his need for quality sleep.

Initially, our nursing provider had to fill the schedule the best they could, and that meant that during the first week and a half alone, we had 15 different nurses in and out of the house. (That number is a little higher now, but we stopped counting.) Each needed to get oriented with the boys, our procedures, our equipment and supplies, and our expectations.

The schedule is becoming more consistent now, and with William having some days where he seems more like his normal self (with the exception of the added hardware), we're slowly finding a sustainable baseline.

As for John-Raven, well...he's mostly cooperating. His oxygen sats sometimes drop at night, requiring suctioning, turning, a pulse ox lead change, and/or a treatment. On a typical night, though, he does pretty well.

It's a long road to stability but we're getting there and appreciate all of the support.

Home Again

After 64 days, William finally came home. And with him came approximately four bazillion boxes of supplies and enough equipment for a miniature hospital. 

He was so happy and excited to be home that he wouldn't go to sleep his first night back and was up WAY TOO EARLY. 

(Clearly he wasn't feeling as sleep deprived as some other people in the house.)

Together again and loving it.

You know you've been in-patient too long when your green band turns gray.

Independence Day?

John-Raven and William had a good, long-overdue visit last Sunday.

Looks like we finally have a going-home date. Our goal was to get William completely off the ventilator before coming home, but he's still needing it at night. Since that doesn't seem likely to change soon, we've decided to bring him home with vent support. We have completed all of the necessary training and have begun the process of rooming in, which we will finish in time to get discharged on Tuesday (assuming all goes as planned). Looks like July 4th will be a kind of Independence Day for the Cobb Quad.

John-Raven rocked it patriotically on his brother's behalf at Hill Elementary's 4th of July celebration.

Two Steps Forward, One Step Back

It's been a while since our last update. To sum up, we've had some slight delays, but we're getting mostly back on track. And now for more details...

John-Raven gave us some extra work to do for a while. He picked up something that knocked his oxygen saturation levels down and required a "short" visit to the Emergency Department at Cook Children's, which revealed the start of pneumonia in one of his lungs. He didn't have to be admitted to the hospital, and we treated him with the usual barrage of steroids, antibiotics, and breathing treatments, and although it took him a few weeks to get back to baseline, he eventually got there in time for the beginning of summer school. Other than that, he's been doing fairly well.

William was on a fairly clear path toward home (after our requisite rooming-in sessions, which are necessary for families with kids who have new trachs) which would have put us headed home soon, but he started running a fever last Friday. His fevers would come and go, mostly arriving mid-day and dissipating by day's end. None of the tests came back with anything, so we weren't (and aren't) sure what caused the fevers, but they set our discharge back by probably a week or so. His trach culture did test positive for MRSA yesterday. We don't have any evidence to suggest that's been the cause of the fevers, but it's being treated nonetheless. Other than his fevers, which cause him to sleep a lot more than normal, he's been in good spirits and is almost back to where he was at the end of last week.

Amanda and I have completed our trach training and our CPR training, and we even got to be the first to try out an emergency simulation program that the Transitional Care Unit is planning to roll out to parents. (It's basically what they already use to train nurses, and they're going to begin using it to train parents, too. It involves a "dummy" child that actually has a trach, can cough, turns blue when not breathing, can be given CPR and breathing treatments, and generally provides some real-world simulations of problems a trached child might have at home.) All that's left for us is to do our rooming-in, which we should be able to do once William is completely off the vent and only requires an amount of oxygen that is easily sustainable with our home equipment. 

Are We There Yet?

Kazoo Lips and Puppy Dog Hat. (Because, why not?)

William is generally doing okay, and Mom and Dad are learning all the little details of how to care for a trach (dressing cares, tie changes, trach changes, etc.) His lungs are still pretty junky, and he has a lot to clear out, so he's taking a little longer than expected to get completely off the vent (though really, he's just on CPAP, which means that while technically still on a vent, he isn't really needing the full support a vent provides). So he's making progress, but isn't cooperating as much as we would like. His demeanor has been pretty much normal, though, and he's providing plenty of entertainment (as demonstrated in picture).

And who else isn't cooperating as much as we would like? If you answer "John-Raven," give yourself a high five! Last Friday, he began having a little respiratory trouble. It didn't seem to be much of a problem until Saturday when he began really dropping his sats and running a fever. Sunday came, and he wasn't any better. We even had to briefly raise his oxygen to four liters just to keep his sats close to 90. Thankfully, that didn't last long, but it was enough to signal that he needed to be looked at more closely. One trip to Cook Children's Emergency later, and we had some answers: an x-ray showed the start of some pneumonia in one of his lungs, his white blood count was slightly elevated (though not actually in the "high" range), and his lactic acid was just barely outside of the normal range. All of which indicated that we were at the front end of Random Annoying Sickness, so we went home and continued to treat him with steroids and antibiotics and pulmonary treatments and other things of the hit-him-with-everything-and-hope-this-works variety. He's already much better, so with any luck, he'll be fully recovered soon. Just in time for summer break. 

William's Busy Week

William has had a busy week since our last post. On Monday the 9th, the docs decided to scope his airway, mainly because he is considered to have a "critical airway" (that is, highly constricted and difficult to intubate), which had put him at much greater risk during his emergency on the previous Thursday (May 5) and his re-intubation on Friday (May 6).

For the uninitiated: Anytime someone requires intubation, it's because they can't properly breathe on their own, but if you can't get a tube into their airway, well...that's a problem. ('Cuz, ya know, that whole breathing thing is kinda important.)

So the scope was done to see just how bad his airway was, and what we learned was what we had been afraid of: To keep him safe, he needed a tracheotomy.

William = Trachtastic!

So the bad news was that William needed a trach. The good news is that, hey, he can get a trach and that will make him a ton safer in the future. Difficult as it was to accept this new thing, we recognize that the good definitely outweighs the bad here.

The surgery was performed on Wednesday (the 11th). Everything went well, and a couple of days later, the doctors were able to remove him from the vent and he was switched to a trach collar for supplemental oxygen so that he could breathe on his own.

Earlier today, he had his first trach change, which is a bit of a milestone because it means that he is no longer considered a critical airway due to now having an artificial airway that provides quick access for a vent in the case of respiratory difficulties. The ENT surgeon confirmed that the site itself looks good. So...success!

(There was a little hitch, though, as during the trach change process, some mucus plugs shifted around and gummed up his lungs a bit, requiring that he be put back on the vent temporarily, but that doesn't appear to be a cause of great concern.)

All in all, things are (mostly) going according to plan and within the next day or so, William should be moving out of PICU and to the regular floor where we will begin learning how to manage and care for the trach.

So once again, it's time to adapt to a new normal, but in the long run William will be safer, and that's what matters.

How do you laugh with a vent tube in your throat?

Like this: 

It's hard to tell, of course, but he really is full of the giggles (in the pics above and below). Part of that is the result of a visit from a certain sibling: 

William's x-ray this morning showed improvement in both lungs, with increased aeration in the left (which had collapsed Friday night). So overall, making progress. 

Happy Mother's Day to all the amazing moms out there!