Wednesday, November 18, 2009


Thursday was great; Friday the storm came in. Annie began Friday by dumping her breakfast on the living room floor. I had a brief thought that maybe she wasn't feeling well, but since Thursday was so great, I quickly dismissed it, and figured that maybe moving the G-tube rate up 1 point, from 105 an hour to 106 an hour was too big of a change--that's why she threw up, I thought.

So I packed her up for school, and off we went. She did look a bit droopy in the van, which I mentioned to Nurse Moira when I dropped her off. However, she didn't have a fever, because I had checked that at home. And there have been at least 156+ other school days when she looked droopy on the way to school after throwing up her breakfast, and nothing of import was wrong.

So when I picked her up in the afternoon to take her to her OT appointment, Nurse Moira said that Annie had spent most of the day snoozing on her lap. The change from Thursday was so dramatic, we were all pretty sad about it--but not alarmed. And since she was so lethargic, I cancelled her OT appointment, went home, and gave her 5 mg. of hydrocortisone.

Around 4 PM, I checked her temp. Great--it was 100+ under her arm. So I started running Pedialyte in her g-tube, and gave her 5 more mg. of hydrocortisone. She kept the hydro in for a decent amount of time, but gave me back the Pedialyte. So I gave her 5 MORE hydrocortisone.

When Bill came home, we put her in the van and started down to the ER. Since the hail, sleet and frozen ice was all over the road, it took us awhile to get down there. Somewhere on the way, it occurred to me to pray: "Lord, help us to know what to do, and please heal Annie." By the time we drove off the freeway exit, Annie started chattering, laughing, and otherwise perking up. We then began debating whether to take her home, and take her in to the pediatrician in the morning. But we didn't want to get back in line on the freeway, so we went to McDonald's drive-through to relieve our stress with carbs and salt. And as we're driving back to the freeway, we put 2 + 2 together and realized that God had answered our prayer!

I did take her in Saturday morning, just to be on the safe side, and the pediatrician couldn't find anything obvious that would cause her to spike a fever: no ear infection, lungs clear, no swollen glands. She is sneezing, and something may present itself, but as of this morning, nothing.

I do wish Annie could tell me when she's not feeling well, so I could give her more hydrocortisone right away, instead of waiting for obvious signs, like vomiting and fever. I always feel like I'm behind the 8-ball. And it's always a judgment call as to how much, and how long to give her the higher dose, because she can't TELL me what she's feeling. And a person with Addison's needs has an illness coming on, they need hydrocortisone right now.

Now, along with the sneezing/cold thing, came her seizures back. And as of tonight, she's running about 8+ a day again. It's such a one step forward, two back deal. But even with all this, I detect an upward trend. Tonight while I was sitting beside her on the floor, I noticed her attention switching easily from one thing to another. She was playing with her big Princess book, and looking at me from time to time. She also was leaning back on her bean bag chair, with her legs out straight and her ankles crossed, rubbing her feet together like her daddy does. She looked relaxed and natural.

I remember when we were first in the hospital in '07, our friend, Erik, who has some experience with disability, said to watch trends, not days. I know we've talked about that before on this blog--so here's another reminder to watch trends. And although this last week had some speed bumps, the trend is still up.


Cast all your anxiety on him because he cares for you. 1 Peter 5:7


Anonymous said...

Love you Sullivan family! It is good to get caught up on Annie and see from your posts that she is doing well. I can just see her striking the "Daddy pose" and taking in everything around her. Such a precious girl she is. Thanks for the specifics on how to is an honor to join you and others as we storm heaven on her behalf!


Anonymous said...

Annie, you are an enigma and Jean, you, (and all) the Sullivans, are amazing!!! Thank you Father for the upwards trends and reminding us to look at them. Looking forward( to that communication from Annie "I think I need some hydrocortisone") and oh so much more, in the future. Thank you so much for the news.

Continuing love and prayers,

Terri W

Gretchen said...

One thing i noticed on Monday--despite the fact that she might not have been feeling great/or maybe was tired after school--is that her transitions from you to me are going much smoother. Even when she fusses, I notice that she's calming more quickly, and settling in to our reading.

Thank You Jesus for that trend, and thank You for the opportunity to read Hop on Pop. My kids just don't think I'm cool with that anymore. ;)

Anonymous said...

Zac can tell us when he's getting sick, but not always it's like you need to know BEFORE they get sick that they are getting sick so you can get in front of it with increasing their hydrocortisone. (if that makes any sense) It really stinks, i wish we had a meter to tell us they are low like diabetics have.
Thinking of you
Barbara Saunders

Jean said...

Thanks, Vickie & Terri for checking in--I so appreciate your prayers for Annie!

Gretchen--Hop on Pop is very cool. Your kids will think it's cool when THEY have kids.

Barbara--thanks for reminding me that even if Annie could talk, life would not be a slam dunk. The thing I wish someone would invent is a pump that could mimic cortisol infusion. Wouldn't that be great?

Anonymous said...

Jean -I hope you understand i didn't mean to come across rudely, just that it's not an exact science and with my Zac, he himself has a hard time understanding what's going on. I hope that as he gets older he gets a feel for his own body. Yes wouldn't that be a great thing to have a pump like that.
Thanks for sharing your experiences.

Jean said...

Oh, no, Barbara--I didn't think you were rude at all! It was actually encouraging to me to know that even if Annie could talk, it still would be hard to figure out. So, I really do appreciate your input & comments, because it helps me to know that it's hard for parents of Addisonians to know the exact thing to do, no matter what the age or capabilities of the child.

So--keep those comments coming!


Anonymous said...

Maybe you (someone) could train a service dog to "smell" the change in cortisone levels, and warn you when they're dropping. they do have dogs that warn diabetics of low blood sugar, and seizure pts of up-coming seizures....hey, your dog could be a multi-tasker: cortisone AND seizures!

Praying with the Family,

Jean said...

That is a great idea, Pam. Now if we could make it a boxer so Bill would be happy, we'd have all our bases covered!

Sue Powell said...

Hi... I've been out of town but just wanted to say I am still thinking about you and praying. Sounds like some big ups and downs. Praise God for the ups and praying through the downs.