The relentless raining down of our current condition…

Currently sitting in our van halfway between home and hospital not knowing what to do or where to go or how to process life right now.

I’m usually really clear and direct when it comes to Poppy’s care but I’ve had so little sleep and so much stress and heartache and worry that i feel fogged. Drugged. Beaten.

My daughter is 5 and has a rare genetic disorder (craniofacial syndrome). Her condition is multifactorial and she already has a heart defect.

Last Monday she started with a high fever and congestion. Took her to ER because any congestion leads to breathing issues for her. They treated her with Tylenol and zofran (because she vomited while there) and sent us home. Fever persisted and she became increasingly lethargic so i took her to her doctor who called the hospital (her heart rate was in the 150-180 range while resting) and they admitted her.

Upon being admitted during her initial exam i noticed her tongue was white and swollen. Then, before our eyes her lips began swelling and her tongue and lips and eyes turned bright red. She was completely out of sorts agitated. I have never seen her so angry and irritable – and she has been

in and out of hospitals her whole life.

Because of her narrow airways they called the ICU and sent a doc up to assess her airway. Pushed a dose of Benadryl through her IV, then decadron (steroid), and then antibiotics because her ear looked infected.

(Then her ENT came in, physically held her down and assaulted her – her first negative hospital/doctor experience and i am in the process of writing and filing a lengthy report with the hospital)

She fell asleep shortly after. Her breathing was worrisome so she was on O2 and monitored very closely with Epinephrine on hand just in case. Her blood work came back showing elevated numbers for inflammation.

Fever lasted 5 days then went away and her temp went down to 96-97 for two days. I noticed her palms were red (which is easy to tell because she had skin grafts and surgeries on her hands).

She did not have a rash and only one lymph node was somewhat swollen. Docs suspected Kawasaki Disease but then told me they were confident that it wasn’t KD because her symptoms went away without IVIG. I asked them to repeat the blood work and they said they didn’t need to. i felt reassured and we went home. I hadn’t slept in 5 days (I’m a single mom) and was so tired of the hospital.

After my first nights sleep in 5 days i woke up SO ANGRY that i didn’t insist an echo and repeat blood work while there. From what i have read now i know that the symptoms will go away on their own (and are sometimes treated with steroids – which she was) This is now day 8. Her cardiologist is not returning my calls (been calling since yesterday early morning) and her PCP even called the cardiologist and still nowhere.

I need to see her heart. I need to know that this is NOT Kawasaki and that she has no damage to her already compromised heart.

Please rally with me and send urgency toward her getting an echo and repeat labs so that we can heal and move forward.

I don’t know how much longer I can handle the hurt. I’m lower than I’ve been, ever. I’ve missed so much work, I’m worried I’ll lose my job and then we will be in so much other trouble.

And my van is acting up.

I don’t know what to do other than tell the story. I need someone to see that this is today for me. And this is really, really hard.

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