Morning vitals for Liv would consist of temp, O2 levels, blood pressure, peak flow and spiro. That second morning, the Dr's also decided it would be helpful for Liv to do an eNO test. This is another air output test, but it's to test the output of nitric oxide (NO) from the lungs. The higher this number, the more inflammation in the lungs. They prefer to see a child Liv's age and size to have a 20 or lower on this test. Liv was at 73 which was worrisome and explained the respiratory issues she was having. This may have been due to coming off of certain Asthma meds to better ready her for pulmonary function testing (PFT). It could also mean that the dose she was on prior to coming into the day program was simply not high enough, but her O2 levels just never showed this. For several reasons, the Dr.'s refrained from oral steroids: for one, that would completely throw our skin care regimen off course since oral steroids are *horrific* on AD kiddos (causes rebound flare's after the course is completed) and secondly, we needed her test results that she would undergo to have as pure results as possible. She was in good hands though, with eyes constantly on her - I never felt like this was a bad/wrong decision and I am extremely vocal in her care. During this particular morning's spiro, the CNA noticed that Liv seemed to be hesitating with her blows. She tried once more and Liv was performing in the same manner - she called Liv's nurse over and she listened (with her stethoscope) to Liv's breathing for her next blow...but she didn't listen to Liv's lungs, she listened to Liv's throat. I'd learn later in the day why this was.....
A video I took at a prior appt, of Liv doing her Spirometry. Pay no mind to her mismatched socks, her socks almost never match - on purpose. ;)
Moving on to Liv's bath, she has had a fear of putting her face in the water for as long as I can remember (even as an infant, she was not fond of this). This morning she was faced with putting a soaking wet washcloth on her face, or putting her face in the water. This was new to her because it wasn't just me pushing the issue, but now it was her nurse - she chose the washcloth. After keeping the drenched and dripping washcloth on her face for a minute or two, she was over it. She was ready to bite the bullet and put her face in the water to get her face wet. She did it, it wasn't pretty and it was for maybe for 2 seconds, but the water was on her face and that's what mattered. (For the record, regardless of what ANY Dr. or person tells you, the best way to hydrate skin is to put water on it! It's what you do following the water that can make or break this hydration process)! She splashed and played happily for the required 20 minutes. During that time, I found it helpful to gather her towels, ointments, Vanicream, several plastic spoons (I would get better at my estimate of ointment and cream to spoon ratio), wet wrap clothing and gauze dressing and dry layer clothes together. Once the 20 minutes is up, you're in a full on rush to get everything done - no really, you should have the child patted dry, Topical steroid (ointment)/Vanicream applied ALL over and be working on getting their wet layer put on (to include the face wrap if necessary), all within three minutes of getting out of the water (at least having them "sealed" with ointment/Vanicream). It's a full on mad dash to get this ball rolling. I like to set up an area in the bathroom (a shelf) at home that has everything I'm going to need right there - I did this at NJH as well, I had a chair in the bathroom that I used as this shelf. The nurses had no problem with this and worked around my mild "OCD" just fine, thank goodness. Once Liv's face wrap was in place, she was off to Art Therapy, she was nervous to head to therapy in her wrap (more specifically her face wrap). This fear was short lived, as soon as she walked into the Art Therapy room she was greeted by one other boy and he was all too aware of what the wraps were like. Guess what, people here, kids and grown up's alike - they get it.
I'm so very glad that Art Therapy was good for her because the afternoon procedures that followed would prove to be a test of endurance within our hearts and souls. Liv and myself (mostly Liv as she had to endure) were in for a whopper of an afternoon and evening....little did we know.
Because there is so much of this day remaining, I will add that in an additional post - it's a doozy!
Billie
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