We spent the day downtown at TCH. Our sweet love lost weight again. We meet the dietician again. We increased her feeds again. She had five needles shoved in her little body – flu shot, synagis, and attempts at blood work. She was hysterical. She was shaking her head no and desating. I would so love even one doctor to watch them try to take her blood – just one. It kills me, but they won’t OK a portacath. Anyway…came away with four new meds. Turns out she has had Rhinovirus. With it going on for over a month now, we are starting some Gent. We’ll see. She also changed up the allergy med – hoping that will help some. Her GJ stoma and trach stoma have been very red and sore for over a month as well. We tried one med last month. This month we are trying two different meds - Clindamycin and Triamcolone.
And….we got OK’d for a swallow study! Her OT is going to do flips!
What a day.For all of you.Never a dull moment,is there?Bummer on the portacath.Zoey had one when she was under treatment and I know others who have it for the exact same reason you want it.would make life easier for her.she sure deserves easy.Hoping things clear up soon and she is feeling better before long.And yeah for swallow study ... that child may be eating before long.she sure shows the desire to do it.Half the battle!
Sounds like us here. No one will ok a port, but they want to take blood constantly! going to run out of areas soon!!
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