Chaos, Party of Two - Chaos, Party of Two

At Liv's last Dr. appt - her Dr. made it perfectly clear that we'd have a wait to get into the Pediatric Day Program. He wanted a very specific team of Dr.'s lined up for Liv's care (one of the *many* benefits of having her allergist already at NJH). I received a phone call from the Ped's Program Scheduler within a few days, she also let me know it was going to take some time to get the team together that was requested. All in all, I was impressed that it just took five weeks to get this team together given that I'd had so much warning.

Now typically I am well versed in checking in to a hospital setting and at first impression, this was no different. Everything was what we are used to (even though it's very different from most hospital settings) and then we walked into Liv's room and met Liv's Dr. and PA. Boy did these women have *questions* for me! We did minor background as they actually knew us from prior triage visits, but then Liv's clothes came off and we started going over her trouble spots (her AD) and marked those on a diagram (that the Dr.'s would update during our visit). Once the skin assessment was finished, the Dr.'s listened to Liv's breathing and heard some wheezing and a lack of air movement so we walked back to triage, did peak flow and spirometry testing (both of these are to test the *output* of air) - both numbers were decreased so Liv went back to her room for a breathing treatment and some oxygen monitoring. Not exactly how we'd planned to start our visit, but hey...if it's going to happen anywhere - might as well be the nations #1 Respiratory Hospital, right?

Because NJH kids are chronically ill,

Starlight Foundation takes a bit of a shine to them.

Goodies that greeted us upon our arrival - so sweet!

Anyway, this little respiratory issue kind of sidetracked us for a bit - the rest of the afternoon and night, actually. During the breathing treatments though, the nurse asked me something that seemed so silly (at the time)....she asked if I'd actually been putting my hands inside Liv's creams and ointments - well of course I had! How was I supposed to get it from the jar to her itchy little body?! Well, here's the first new fact I learned while at NJH - never put your hands *inside* of your AD kid's creams and/or lotions! Our AD kids have a lot of bacteria on them and we are just contaminating their creams and ointments when we do this...thus continuing the "itch/scratch" cycle. Wow, mind blowing...who would have thought - NJH, that's who! The nurse let our Dr's know and we were handed a handful of prescriptions for new meds (because this is an outpatient facility, you still need to get prescriptions and fill them downstairs at the NJH pharmacy). I got Liv's new Vanicream and ointments just in time for her night bath at NJH.

We spent the first night there as is pretty typical and Liv wasn't breathing so well. The reason first nights in the program are typically overnight visits is to get the initial bathing and wet wrap routines/regimens on board. I can't lie, I had no idea what I was supposed to learn from this as Liv is already a patient at NJH and we'd been told to do wet wraps a year or so ago. Boy did I have that wrong - so very wrong! Turns out, the wet wraps are exactly as I was doing them, *except* I wasn't using nearly enough of her cream and I didn't really get the idea of how to put the steroid ointment in certain spots only and work around those with a good amount of precision with the Vanicream (again, in heavy amounts). Once the ointment and cream was applied sans hands in the container, wet wrap was applied on body and face then Liv did her night vitals. She still wasn't breathing quite up to par and the Dr.'s were concerned that this was due to pulling her off of some of her meds for the upcoming tests and procedures - they decided to monitor her O2 levels and did a bedtime breathing treatment. After this was done, Liv was given a sleeping medicine - this is to help the kids sleep those first few nights off of antihistamines (a night without antihistamines - what??!!). Once the sleeping medicine was given, Liv started acting super goofy and passed out, all in a matter of maybe 10 minutes - wow. She slept until about 2 AM )which is pretty typical for her) screaming that she was itchy all over - in came her nurse, off came the wet wrap and on came a LOT of Vanicream - Liv went right back to bed. Our second day started at 6 AM when Liv woke up coughing and wheezing - oy!

 This is a ton of writing and I think I'll go ahead and save the second day for well, another post. :) Thanks for sticking with me this far! Billie