Thursday, May 1, 2014

A Shot in the Dark

 The long researched, longed for, and long planned for growth hormone medicine arrived. Before it arrived, the phone calls arrived. The doctors personal assistant, the specialty pharmacy who will deliver the meds, the nurse calling to schedule the training session. Then I called the pharmacy nurse to talk to her, and then the case manager for the GH called, and then I called the personal assistant again, and then the nurse called again to say she's on her way. Two days before the nurse came I promised the specialty pharmacy I'd be home to receive my on ice delivery. All those months of investigation on the computer and trips to doctors, and suddenly it's here and I'm not sure how this works.

The above picture of Mimi in the GH company duffle bag gives an indication of the excitement we felt when the boxes of needles, alcohol wipes, and injection pens arrived. This has been such a long awaited thing, we were really really ready.

Mimi was scared when it was time to do the first shot with the nurse. My Mom came to learn, Matt came home early from work, Max stayed quiet and watched, and the nurse instructed me as Mimi screamed. Then she laughed when it was done.

The next night I tried giving her the first on my own shot, while she slept. Lots of moms had said they do it that way, and it worked great. Mimi didn't flinch or move a muscle. I was so relieved. I found the whole thing very easy. I just had to remember to take the growth hormone out of the fridge for 20 minutes first and I had to stay up to wait til she'd been asleep a little while.

So I proceeded to do the shots, Monday night, Tuesday, Wednesday, and Thursday. Her dose allows us to be off the seventh night (6 nights shots, 1 night off). Friday night found us in Connecticut visiting my sister. Mimi had developed little dark circles under her eyes, but all else seemed fine.
By 11pm Mimi was congested and crying. She kept crying and crying and crying. Then she got a little fever. She woke up the next morning and I gave her Tylenol. She was ok, playing with her cousins and singing in the yard with all the kids.

On the drive home that afternoon, she fell asleep and then woke up at a truck stop blazing hot. I took off her undershirt and put her back in just a t-shirt and took her socks and shoes off to cool her down as we kept driving. I felt unprepared as I did not have her Endocrine docs phone number or children's Tylenol. errrrrr. She cooled down again, and by dinner was singing to everyone in Arby's. LOL

Back home she seemed ok - I thought she probably just has a virus or something. But on Tuesday afternoon, her eyelids looked weird - puffy- not too bad, but droopy. So I went through all the warnings for the drug and thought I better let her Endo know as that was listed as a side effect. I thought I was being overly concerned. She wrote me right back and said no dose tonight, and slowly start her back up on lower amounts until we reach half the starting dose.

The next day, Wednesday, I took her into her primary doctor to check her lungs as she'd had off and on fevers and coughing. No lung trouble, but wait, she has a double ear infection.

Back home and I look up the drug warnings again and there can be ear infections with somatropin (GH). Mimi had her last ear infection 14 months before, so that was a coincidence? that a week into GH she has a double ear infection?

Where last week there was ease and hopefulness, now the train of excitement has stalled and I'm holding my breath and checking her face to see if she's looking puffy on each dose level.

I don't understand if these things happening means that she's in danger or if she'll need to be on lower dosing all the time. Will she not grow as fast on it if she is lower dosed?  Will she be ok on it? I also am thinking Why is her face swelling and why are her ears infected? Why does that happen? Can someone tell me? The primary doctor said that her body is reacting to the change. I don't know...
I don't understand. I hope this can be one of those stories of "at first it was a little bit hard for her, but now she's doing soo great."

We have a busy weekend coming up, and I am trying to get things in order around the house. It felt  like this week I got behind in all my tasks and the house on any given day looked crazy. And then I remembered that it's hard to do it all, when a sick little one only wants you. And I remembered that she wanted me to hold her and read to her, and play Barbies, and library, and Frozen. And I knew she felt strange and her ears hurt her.

That's just fine, she has me. And I'm not taking my eyes off hers- with each day and each increase. .1,2...