And so....I may have gotten the order of the day mixed up a bit in my prior post. Between the wet wrap and Art Therapy, Liv met with the psychologist for a psychosocial appointment. This is a very typical appointment in the Peds Day Program and I requested it specifically. Liv shows some serious signs of anxiety and why shouldn't she? She has a lot of weight on her little shoulders. Liv exhibits behaviors like putting me between her and the eggs in a grocery store (or shouting the word "eggs" as one would shout the word "fire"), she started talking about dreams she had the night prior...about foods she is allergic to. There are some other behaviors as well, like her sleeping routine (or lack of) - she talks in her sleep, she walks in her sleep, she wakes up to "binge eat" or just wakes up to play. Her sleep schedule has always been this chaotic and I just thought it was her "normal". Turns out that a lot of AD kiddos have a very interrupted sleep due to their itchy skin waking them up. During this meeting we just talked and touched bases on these different issues. We would later work on a plan to help with her anxiety and we'd find out that ultimately, she sees me as her security blanket which explains her separation anxiety(that only makes sense though). I walked away from this appointment thinking, "great, what is *that* supposed to do?" It was later in the week that we'd tie things together.
Once Liv finished with Art Therapy, it was a mad dash to get her out of her wet wrap, apply her Vanicream (yes, another layer is added after the wrap comes off), get her dressed and semi presentable for her next appointment. We were heading up to her Pulmonary Function Testing for what feels like a Spirometry, but in a box.
The day was young and she's still smiling bright!
Once we finished this it was time for a blood draw, you'd think this would be easy with how used to needles Liv is *and* the fact that they numb the kids arms here. This was far from easy, if you include the Child Life nurse, there were five of us in the room aside from Liv in order to make this blood draw happen. The blood work would be sent off to the lab to check her IgE levels (or reactions to foods by way of blood test). We were given a break for lunch and then it was back to the procedure room for skin testing. I can think of about 100 things I would rather do than skin testing, just off the top of my head, but this is again, extremely important. We must see what her skin reacts to and how badly it reacts.
Those bottom third hive up is cattle (yes, we have cattle near us so I had them check it) and the last is horse. She's never going to be a farmer, that's for sure!
We finished this test in the 15 minutes (after skin pricking) required, washed her back and put her Vanicream on. At this point, we headed upstairs to have the soft tissue in her neck x-rayed. Even though she's had her tonsils and adenoids out, in about 15% of people, the adenoids grow back. I later found out that hers have in fact grown back - joy!
Liv was being an absolute trooper...and then IT happened. They pulled us back to the procedure room for this fancy study called the pH Probe Testing . Child Life came in and explained everything to Liv, they let her know that the medicine used to numb her nose would burn a bit, but that would end quickly. They even let her know that when the medicine went up her nose, it would come down her throat and for a bit, she would feel like she couldn't swallow but that she would be fine and they'd make sure. Liv patiently listened to this and put on her bravest face, but I don't think she was fully aware of how invasive this was really going to be. They inserted the syringe into her first nostril and from there, it was the fast track to bottoming out emotionally - for both of us. I was sitting behind my daughter, with her in my lap, holding her arms with the fiercest of grips while another nurse held her head still for the nurse placing the probe up her nose and then into her esophagus from there. Once the probe was placed we had to go back to x-ray to make sure the probe was placed properly. Liv was in a pure state of hysterics and was not going to walk to get back upstairs. Wheel chair and two nurses it was as far as escorting us up to x-ray. We had a quick x-ray which showed placement was almost perfect - little movement of the probe was required. By the time this was placed and set to go, the nurse showed me the machine that is hooked up to the probe and as she was telling me how to use it, Liv was losing it and becoming more hysterical by the second. I lost it and I looked the nurse in the eye and *kindly* informed her that my child was hysterical and that was NOT going to subside anytime soon. If she wanted me to gain anything from this study and do so with the smallest inkling of cooperation, she was to leave us be and I was taking my child back to her room. She suggested several options to help distract Liv - I (again) *kindly* stated that she did not know my child and at this point in our day, I was NOT going to do anything to distract her. I was going to take her to her room and hold her. I was going to do everything in my power to help her find her calm little place she goes to when she has had a bad hospital day in the past. Turns out it wasn't me that did that - at least not by myself, a child life student that followed us through this most recent procedure came into our room and asked permission to just sit with us. I was not in the mood to argue, but she also didn't seem very intrusive so I agreed as did Liv. She sat by Liv's bed painting a picture while Liv watched...she then started doing bead work as Liv watched. I sat and rubbed her back as she nodded off. She slept so soundly for at least two hours. Two sweet and wonderful hours. I spent the first 45 minutes of that crying quietly for my girl then fell asleep with her. This day was beyond anything we'd ever expected, but we made it this far, we were not backing down at this point.
Billie
PS, I promise that tomorrow is a brighter day in this story!
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