Sunday, July 31, 2016

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.


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  3. The Cobb Squad is amazing. Thank you for sharing your inspiring journey. You and Amanda are marvels. Prayers for the Cobb Squad, each of you with individual needs, are a priority for the "Briarhood" -- Patience, medical skill, rest, comfort, courage, understanding, faith, sleep, ytime, knowledge, did I say sleep and rest?

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  5. I do not know why my posts keep posting. The Cobb Quad (to me the Cobb Squad which most of you are way too young to know the Mod Squad my favorite show) is an inspiration to all.

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