Stupid Influenza :/

Emily had a rough night Monday night and is now on 3L of O2 to keep her sats above 94%. We ramped up her respiratory treatments to Q2 (every 2 hours) and continuing antibiotics. The suggestion is that she has a super infection on top of Influenza, so antibiotics are important at this point. They also took her IV out last night and now they're gonna have to get another one going b/c we may need better hydration and nutrition if we can't keep her calorie intake up enough b/c of all the treatments. We stop feeds during these treatments so she gets way behind, and that is really not good for her.

So, needless to say, we won't be going home today. That sucks.

Please keep her and us in your prayers.

Peace <><

Influenza-B

Thanks for all your prayers and well-wishes. It turns out Emily has Influenza B, so that's what we're dealing with. Not sure if she had strep and now the flu -- regardless, she's doing ok. We're not on any O2 and the Q4 treatments seem good, but we're gonna watch her and see what if we can determine we'd be better off at home. She's tolerating her feeds well and generally in good spirits, despite not really wanting to come off BiPAP.

The big news is that we have found a hospital that we will be returning to, Sinai Hospital. A couple SMA families have used Sinai and said good things about it - and after some research we decided to try it out this time. Amazing! They're doing an incredible job caring for us and working WITH us in every move. They are very family friendly and ready to follow our lead. They've created an "Emily Book" full of our Non Invasive Ventilation protocol and other Spinal Muscular Atrophy (SMA) care info, so ANYONE that is going to deal with us and Emily can read things over first. They've also given Emily a special status that allows us to skip the ER and admit straight to the PICU in the future. We just let them know and they'll get everything for Emily's arrival as long as there is an open bed. Very cool b/c the ER here was less than impressive.

Anyway - unless I'm dreaming you can imagine how nice it is to be treated well in our circumstances and not have to argue with medical staff about what Emily needs. We've even learned a few things from the Respiratory Therapists since being here. :) Even though they have not seen a Cough Assist here for many years (or at all) they love it and have caught right on. Good stuff.

Hoping to be home soon, but not rushing things. Peace <><

Still not sure what's up.

We had kind of a standard, uneventful PICU day - which is good! Emily's secretions are getting thicker for some reason, but still not sure why. We will get some cultures back tomorrow, so maybe that will tell us something. She was generally happy today and got a lot of sleeping in. Her lungs are clear as day and her O2 sats have only really dropped a little and come right back up with a little coercing of the cough assist and suction - and, of course, good respiratory treatments every 4 hours.

So, the fevers have not come back, so that is a relief. All the rest is a mystery - we usually land in the PICU b/c of desats, junky lungs, fevers, and "normal" emergency stuff like that. But it all makes sense. This is rather baffling, but maybe we'll see some sense when labs come back.

Oh! It's always nice when you can learn new tricks from a PICU b/c usually we're ready to pounce on any shinaniggans. The Respiratory Therapists here at Sinai have been great and taught us a couple tricks regarding nasal suction -- I call it "irrigating the nose" -- effective. Maybe I'll post a video, but essentially it is squirting saline in one nostril while sucking it back out of the other -- I may start doing it to myself! (allergies). Also, being here where we can stay in Emily's room and everyone is paying attention (and we can still do a lot of her stuff) has been way better for us. When it comes down to it we don't really want someone else touching Emily (for our sanity and their's) so this more personal setting is better. BUT, we've not experienced a MAJOR emergency here, so that would tell us on another level that we can skip for the time being. :)

So - we're hangin here. Annabelle is with some friends and will see Grandpa and Grandma in the next couple of days. Thanks Vandenheuvals for giving her a second home! :)

And thank you everyone else for your thoughts and prayers and for checking in on us via Twitter and Facebook! :) Hopefully we'll be going home in a couple of days and this is nothing b/c we caught it before it became something.

Peace <><

Sometime off BiPAP. Keep it up Emily!!

Sent from my iPhone :: Peace <><

Admitting Emily to PICU

We are admittig Emily to the PICU right now. This is after 5 days of antibiotics and fevers and will not come off BiPAP. Tests look "normal" except white blood cell count is low. I'll be updating via
Twitter (and Facebook) which you can see on the left side of this screen. Thanks for your thoughts and prayers.

Nate
443-355-4090
Sent from my iPhone :: Peace <><

March Updating

Emily's been driving a powerchair at school!!!..... and like it's no big deal. :) Everyone has told us when our kids start getting into powerchairs and learn that they are somewhat independant they "grow up" and start talking more and stuff. For us, Emily is not a talker -- she's 3.5 but has a very difficult time forming words -- but she has been a chatty Kathy lately -- LOUD. Amazing she can get as loud as she can when her lung volume is so small and weak -- so we thought anyway. It's been great to have a little bit of change in the regard.

She has also been doing incredibly well on the supply of breast milk we are working through. I think we've successfully made it through a sickness that could have been worse - - hard to say for sure, kinda speculation, but she's been gaining weight and has way more energy. Our insurance company tells us there is "no scientific proof that breast milk is beneficial to kids," so we can't get funding from CareFirst.... bummer for us -- and I'd hate to work for a company that makes such idiotic claims as that - I pity them. Regardless, we have some incredibly promising breast milk donors, so thanks for your prayers and ideas in that regard.

Thanks for checking in! Peace <><

Nothin much better than sisters :)

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Emily Rolling

Incredible! Emily's been working on rolling at school for a few months now and she's got it down pretty good. Kinda looks scary, but she's tucking her arm and rolling her head over to get her body to follow down the little ramp. Doesn't take much strength as the head is so heavy, but takes some determination! She was so proud of herself, as were the rest of us. I wasn't there b/c I have to go to work :/, but I get to see the video. :)

International Night at elementary school. Scandanavians Rule!! :)

443-355-4090
Sent from my iPhone :: Peace <><