Thursday, April 28, 2011

So, how did it go?

Emma had a procedure yesterday at Children's. It was a really horrible, awful day.

But I'll skip to the end and say that the urology tests that they were doing showed that nothing scary is going on, so that's good. It's one of those times where it's good news to know that they found nothing, but bad news because there is no reason for her symptoms ... but I'll take the good news :)

We got to children's knowing that there were several tests that her urologist had ordered and that she needed to be fasting because they were going to give her some happy-place-gas for one of them so they could place a catheter. We weren't really sure what all this would entail, but I'm REALLY glad we had the foresight to have both parents present.

The plan was that we were going to restrain Emma lying down on her back while they placed a catheter and also a suppository sensor to monitor bladder pressures and abdominal pressures. Then they'd fill her up and watch how she responds.

We told them up front that Emma would NOT like this plan. Even if the only thing we were going to do was hold her down on her back, she would scream ... but they said she had to be awake so that we could see how her bladder responds during waking times, because that's when we're seeing the symptoms.

So I held Emma's arms and Josh held her legs and the nurse anesthetist held the gas mask over her and the urology nurse began the procedure. Emma was loopy, but still moaning and whimpering and just very unhappy.

After awhile, Emma's sounds started to sound like she was gargling thick liquid. I calmly turned to the nurse and said, "I'm concerned about those sounds. Emma failed a swallow study not too long ago and I'm afraid she won't protect her airway, particularly if she's drugged and unhappy."

Not two seconds later, Emma started to sputter and gag and drop her O2 sats. I told them she needed to be up or on her tummy. The nurse switched the mask to O2, sat her up, called another nurse in to suction Emma's airways, and we got her calmed down.

But of course through all that, Emma managed to push both the catheter and the other sensor out ... and the other sensor came out with bloody poop from all the trauma down there ... so things were going well ...

We got things cleaned up and tried again, this time with Emma's head elevated. After both ... things ... were placed ... down there (YUK!!!!! I seriously just feel violated on her behalf!!!!!!) ... Emma actually started to get a little giggly and make some happy eye contact with me while I sang to her.

But then she sort of lolled her head to the side. At first I thought she had fallen asleep, and maybe she had, but then she started retching. Her whole abdomen just kept heaving and heaving over and over again, quicker than I have ever seen before.

Now, they had told us that nausea was a side-effect of this happy gas, so we had her decompression tube open through the whole thing, but when she started retching like this, I said, again, very calmly, "Ok, those are retches. Her tube is open, but her Nissen is a little on the loose side so it's possible she could bring up something from her stomach and have airway issues again."

Again, no sooner had I finished that explanation than Emma stopped breathing, her O2 sats went down, and this time her heart rate went WAY down! We stopped the gas, roller her over, got her on some O2 and rubbed her back until she figured it out.

Josh and I held it together. The catheter stayed in. The nurse said she'd really like to get the bladder totally full, so we kept going with the test for a couple more minutes. Then the nurse said that she had finished with the first trial and would like to go through it one more time to get two sets of data.

Josh said, "We're done."

I was SO glad he was there

The other two tests were equally as enjoyable for Emma but not nearly as eventful, thank God. And we absolutely felt the power of prayer buoying our spirits, because that was really really hard to watch.

Saturday, April 9, 2011

Baseball widow

Josh and Charlie love going to baseball games together. It's their thing. And Emma and I are VERY ok with letting that be THEIR thing! I mean, Emma has her hat and everything, so she represents her team ...
But I think this picture should be captioned, "Please mom, don't make me go!"

So Daddy and Charlie leave us to have a girls' night.

I'm always very silly about this and say something stupid before they leave like, "Seriously? You're going to make ME empty the dishwasher while YOU and Charlie look at baseball stats?? I'M going to be home all night while YOU get to go have fun!"

And then, once they leave, I realize exactly how ridiculous that was ... on so many levels.

(Note the public apology)

Emma and I always have a great time! One thing I LOVE about nights when it's just me and Emma: The following is a perfectly complete and acceptable dinner ...
Emma agreed.
Peanut butter for finger painting, apples for licking, crackers for crumbling ... this totally counts as following through with feeding therapy, right? :)

And then, after some play time, Emma lets me know in her own special way that it's bedtime. Does anyone else's child's bedtime "meltdown" look like this?
Seriously. When she's tired, she lets me know by collapsing into fits of hysterical laughter.

And once she's in bed, I have sole custody of the remote control.

Ahhhhh, the good life :)

Tuesday, April 5, 2011

Beautiful pictures of beautiful kids

I've said it before and I'll say it again! I am SO blessed to have a dear friend who is gifted at photography and great with my Emma. It's not until you are in the middle of the special needs journey that you realize that, for some folks, taking your child to a department store for professional pictures is just NOT an option.

So even though she didn't ask me to, I'm gonna do another shameless plug - check her out here at Tamara Fladung Photography - I'd love the photography even if I didn't already love the beautiful woman behind the camera! :)