Thursday, April 1, 2010

Update #3

If you want to see cute photos and fewer words, look back at the previous two posts about the Tracy Aviary and the mall.

This post is to tell you how Bridgette's health / sickness have progressed / regressed today.

First, the enteritis:

Bridgette still has a temperature. It fluctuates but hasn't ever gone away. When it's low, I leave it alone. When it jumps, I treat it with Children's Tylenol.

Her tummy has been gurgling noisily. A good sign it is "waking up."

I can't prove it, but I think Bridgette has been in a lot of pain today.

I decided to change Bri's Flagyl intake to four times a day, 1.5 mL, instead of twice a day 2 mL. I recognize that the change was presumptuous. I did it because that's how she was treated in the hospital. We switched her to 2 mL twice a day for maintenance. I didn't have a doctor's order, but the strength of the medication was not altered - both dosing schedules are at 50 mg/mL. It seemed a low-risk change with potential.

She did not poop on her own last night or during her nap, the two times she typically stools. I did a rectal irrigation at 3:30 p.m. after her nap. I pumped in 180 mL saline solution total, and I extracted at least 360 mL of stool and solution (measured) plus gas and some stool that sprayed the furniture or dripped into her diaper. This is a marked increase over yesterday. It is still neon green with small but frequent bits of darker green floating about. Jeff fed her carrots out of his soup while I taught my class at BYU last night. These also came out, in smaller pieces but still just as orange.

She ate a bit of yogurt at lunch, perhaps 1 oz. She ate a little broccoli, chicken bits, rice, carrots, and strawberry at dinner. It didn't add up to more than 1 oz of food total, but she wanted to eat. That's great.

Between 9 a.m. and 12:30 p.m., she created 1 very wet diaper.

Despite drinking about 30 oz of "milk" today, she did not produce another wet diaper. Not even moist. Diapers have been bone dry.

She has been cranky today.

She is grinding her teeth a lot, making me wonder if she has another ear infection. She hasn't had a cold, to my knowledge, so I'm not sure how it could be possible.

We put her to bed at 8:30 p.m. and between that time and 9:30 p.m. she pooped. It was runny, like the fluid we extract during irrigations, but it was substantial. This is definitely a good thing, and we hope it keeps up.

She would not go back to sleep until 11 p.m., fussing and crying. That is quite unusual. If there's one thing I'll give Bridgette, it's that she's a good sleeper.

After several phone calls to her specialist doctors, we determined to put Bridgette on a regular maintenance schedule of Flagyl full-time forever, until we determine otherwise. Whatever bacterial overgrowth occurs when we take her off occurs so fast that we can't "experiment" every week or two. The illnesses are awful for her, awful for us, and it's possible that each time the bacteria "dies" then grows back it is gaining resistence. The bacteria could also be gaining resistence keeping her on the antibiotic, but I guess that's a risk we're willing to take for now, given the alternative.

While on the phone with one of the specialist doctors I got so upset that I started to cry. He has only met her once, and although she wasn't even in the room with him for an examination, he kept saying, "I don't think you're right," about virtually everything I was telling him.

I don't know if it was one big miscommunication or what. I kept having to repeat things like, "That's not what I'm suggesting...," or, "But that's not even the issue...," or "What does it matter if it's technically called 'C-diff' or 'bacterial overgrowth' or 'enteritis,' the point is that her intestines are bloated and non-functional, she's not eating, stooling or urinating, she's really dehydrated and is losing weight..."

In the end, we both agreed I should call another doctor. I don't usually literally cry in frustration, but I guess when I'm watching my daughter in the throes of a dangerous situation, and the person who is supposed to "save" her won't even listen with both ears, it's just a different level of madness.

Second, the 6 month assessment:

Bridgette's physical therapist and case manager for Kids on the Move came by at 9 a.m. We got the results of Bridgette's latest developmental testing, and it showed that she is behind in everything except language comprehension and fine motor skills. In those two categories she tested several months ahead.

Gross motor skills is still the worst delay. She tests at about the same level as a 9 to 12-month-old.

We are adding a third therapist named Audra who is a childhood development specialist. She will work primarily on Bridgette's behavioral and emotional delays, like her extreme levels of impatience and frustration, giving up instead of problem solving, hitting herself and others when angry, and her lack of proactive communication.

Audra will also help us determine whether Bridgette lies on the autism spectrum. The current thought is that she probably does not. They think most of her delays are linked to sensory disorders and that most of her emotional / behavioral issues are linked to her delays. They think she is too social to be autistic, lots of eye-contact, interaction, etc., and that even her violent reactions are a mere matter of communicating her wants without language.

Last, here is what we did most of the day:

Watched T.V.

This is not normal. I'm not against letting her watch an occasional show, but typically her T.V. time is minimal. However, when she's feeling all day pain and irritability (oh, and also when there happens to be another snowstorm outside - winter's April Fools joke on spring, I guess), T.V. is an excellent solution. That's what I like to do when I'm sick.

So here she is engrossed in one of her favorite shows, Word World. (You can see her band-aids from multi-stick I.V. attempts and a burst vein yesterday. Also, you can see a bit of sunken-eye from dehydration too. This is much, much better than it was.)

Word World is a great PBS show where the objects (animals, actions, props, scenery, etc.) are made up of letters that spell the objects themselves. See below. Each episode is catchy, cute, and short. Uncle Jeremy & Aunt Heidi gave us some DVDs for Christmas.

It's time to build a word! Let's build it! Let's build it now!


Lisa Merkley said...

Bridgette has some of the greatest parents around! I always wait anxiously for more news when she is having a rough time. :)

And my boys love Word World. At least they did. When the TV stations all changed last year, we no longer got reception.

Angela said...

Word World is awesome, my 3 year old loves it.
I sure hope you figure all this out. You are going through so much as a Mommy. Bridgette is such a strong girl too. Our biggest problem is trying to figure out why Bells keeps getting diaper rash. Boy do we have it easy.
We are praying for you, Jeff, Bri and all the doctors involved. Praying the bacteria goes away and never returns. Love to all, from sunny 82 degree weather Florida. :-) (Had to throw in the weather comment, maybe it will warm you up a bit)

JulieAnn said...

Cora loves word world too. We have to watch it on youtube though because we don't get PBS anymore.

Lore said...

I am sorry that there was so much difficulty with the one specialist, but kudos for deciding to talk to someone else. We have to be proactive in our own care (or that of a loved one for whom we are responsible). Bravo!

Bri does look cute engrossed in her TV show. Perhaps she is beginning the reading process. You never know. She might be behind in many things, but that doesn't mean she won't be reading soon.

Oh, and it has been in the 90's here. Enjoy your snow.

Love you.

Rosemary T said...

Praying for you and Bridgette. She is so CUTE!