Germs

We are again slower on the posting and just trying to keep the kids healthy. Daniel had a fever earlier in the week that went away, but now it's back (or it's a new bug) with a vengeance. Went to the doctor yesterday and she said his throat is very red, he sounds congested and probably has some virus. If the fever doesn't go away in another day or so, we'll be back there. So, it's germ warfare again at our house but trying to keep the kids apart and the toys sanitized is difficult.

Sofia tolerated 1.5 hours on her passy-muir valve this morning which is a new record.

Now, both Sofia and Daniel are napping and Mommy and Daddy are looking forward to watching the US soccer game this afternoon.

Sorry for no posts

Things have been crazy. Sofia caught some sort of bug which necessitated a few trips to the pediatrician. Nothing diagnosed but she had a lot of mucus/runny noses and was having a fever. She's mostly over it now and it is on some antibiotics.

She's seeing the ENT nurse practitioner today so we hope to get back on the passy-muir trials. She's cruising all over the place and taking more risks so maybe she'll be standing/walking on her own soon?

We had to let a nurse go so we had to cover some additional shifts. It looks like the scheduling may be working out which is good as Daddy is a lot more busy recently.

Daddy took Daniel to a (rubber) duck race this weekend but it turned out to be a bit of a bust as the wind kept all the ducks bunched up. So it was more a duck float.



Here's also a pic of Daniel playing in the solarium.

Helping Out

Both the kids love laundry. Here's Sofia helping out. Yesterday she did two sessions on the passy-muir for 15 mins each and didn't even notice so hopefully she'll be able to tolerate more and more and will keep her airway open.

Two more months...

We're back from today's scoping. The surgeon didn't like what he saw. While her airway is open it looks like there is still some acute inflammation that will keep her from being decannulated. He said it looks like tissue that it doesn't make sense to operate on or do anything else to and basically what we need to do is wait. He expects it either to go down on its own over time or we may need to reconstruct her airway further if it doesn't. He doesn't want to continue her any longer on the steroids so it looks like it is just wait and see.

He wants us to keep using the passy-muir valve in the meantime as that should help the airway stay open on its own. Of course Sofia hates it but she'll just have to get used to it!

Not really good news, not really bad news. Just more of the same for at least two months.

Here are her vocal chords which look good:



And here is a view of her trach with the inflammation highlighted: