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Friday, March 23, 2007

Navy blue icey wet wool scarf

That is what this week has felt like. Cold, incredibly uncomfortable, claustrophobic and scary. A small voice in my head asking, "Why isn't she getting better?" Fear.

Yesterday I took Ellie to the doctors versus the ER because I was hoping to find something that would keep her out of the hospital. Her recent stay left her with 3 bad needle stick bruises, more radiation, and completely worn out. Can't we find a way to keep her home and help her get well. Come on people. She is not getting better. How many days can a little one survive on Pedialyte?

As we bundled up and schleped down to Boston I wondered about the days when the doctors came to you and missed that without ever having experienced it.

As it turns out she had developed an ear infection on top of all else. Her persistent cough had not yet gone down into her lungs so was still just a cold versus pneumonia. She lost 2.5 pounds or one kilo in one week. That really sucks when you only weight 24.5 pounds (11 kilos) to begin with.

Doc gave us two options: go to the ER to do IV drip and antibiotics that way or give Ellie a high dose shot of antibiotics in her thigh. Typical crappy pediatric choices. Knowing they would stick her more in the ER, I chose home and a shot in the leg.

The shot turned out to be two shots because Ellie is too small to handle the whole dose in one leg. Great. The nurse was very efficient in a nurse cratchet kind of way. Clinical. She didn't even look at Ellie or say, ok here we go. Nope. Came in and bam.

Ellie cried and cried and then promptly went to sleep. Checking out. I don't blame her. She even slept in the car seat which she never does. Does she hate me for holding her through it?

She came home and slept some more and more and more. Up for one small meal and more sleep. I kept her hydrated by giving her rice milk through her g-tube in small amounts while she was sleeping.

This morning, however, after hours and hours of sleep, she woke up and smiled. Her adorable, cheeky, all knowing smile. I asked her if she had an aowie and she gave me a dubious look and reached for her toy. She had moved way beyond aowies and what was I doing still talking about it. It was time to catch up on lost play hours.

While she is still tired and sleeping on and off, she is definitely on the mend for real this time. I never thought I would be a mom who relied on antibiotics, but this time I am really thankful for them. I am glad there is no more aowie.


Jacqui said...

I hope that Ellie is feeling better now. One kilo is a lot to lose.

Anonymous said...

Glad me lil princess is doing better. give her a big hug & kiss from me and thank her for my weight loss

Aunty Sue

Anonymous said...

Hope she is feeling better, she is a gorgeous little girl!

Mommy to a former 24 weeker!

Anonymous said...

Oh, poor kid. I'm glad it wasn't too serious or required a hospital trip. Hope she is better soon.

This may be a been there, done that thing for you. But have you and Ellie ever received Child Life Therapy services? Boston has some great kid hospital resources, so I would hope they have a good program there. But the quality varies widely. Sometimes they are nothing more than "play ladies" other times they can do amazing things to help your child prepare and cope with medical stuff. Some of them are good, but don't think they can do anything for kids with disabilities...which are half their census anyway. So, grrr.

Anyway, there is no reason for a kid to get a shot and be surprised like that. That just makes it worse. A shot usually isn't too terrible in and of itself, it is the shock and the holding down and the not understanding why someone just did that to you. Child Life Therapists do a lot of prepping, role playing, talking about the amount of time it will hurt, and that it will get better quickly, etc. Many kids with good preparation do not even need to be held down at all. I think a lot can be done with disabled kids as well, although I know CP is a toughie as far as holding still.

Anyway, I'll get off my soapbox, but I thought I would suggest it. Check with your children's hospital. They may be able to help you make these hospital trips a bit more bearable.

Anonymous said...

Glad to hearthe little lady is on the mend. Love Granpa.

Kathryn said...

Thanks to everyone!

I have never heard of that. I really appreciate your comments though. As we were waiting for a shot I was talking to her about it a little. But I was waffling between to tell her a lot or a little. Would she get more upset or less with the information. Next time I will tell her more and try to do some of the stuff you outlined.