Wednesday, March 12, 2008

Our Day at CHOP

Our day started early! I put Abby in the car at 5:30 and we drove about 2 hours to Philly. Bryan stayed home with Anna, so it was just Abby and me. Abby wasn't allowed to have any food at all, and only water up until 8am. Good thing she's not that into eating!

We met with a nurse from the study who acted like our tour guide for the day. She took us up to the testing room where a psychologist used a standardized testing tool called The Bayley Scales of Infant and Toddler Development. It lasted about an hour, and was a bit anticlimactic.

The Bayley places a lot of weight on gross motor skill development, which is the one area Abby is definitely behind in. Plus, it only scores the test in terms of cognitive development and all motor skills. It doesn't differentiate between fine motor (which Abby is fine with) and gross motor.

Once the testing ended, the psychologist scored Abby as average to above average in the cognitive area, and severely delayed in motor skills. I take it all with a grain of salt. I asked her to give me an opinion of how Abby compared to the other kids in the study she evaluates. She really wouldn't comment, just saying that that's what the study was trying to figure out.

After the testing we headed up to the CPRU to get Abby's sedated echo completed. By now Abby was getting a bit cranky, hungry, and tired. She screamed anytime a nurse tried to hook up any monitor or weigh her or anything. Lots of tears. Plus, once we got her all hooked up, containing her to the hospital bed was a full time job! Thank goodness they had a TV with Elmo on.

However, our nurses were some of the same nurses who took care of Abby right when she was born. They couldn't believe how good she looked! That means more to me than what any standardized test says. They see a lot of HLHS babies come through, so saying she looks good means the world to me.

Watching Abby get sedated was a bit traumatizing for us both. Once she gave in and passed out they sent me out to get lunch and said she's be done in abourt 45 minutes.

I was waiting for her to come back and could hear her screaming all the way down the hall. When she came back, they had placed an IV because I guess she kept holding her breath while she was under. They placed the IV as a precaution so they could give her something to help her if she kept doing it. That scares me a lot.

Worse was her reaction to waking up groggy, surrounded by strange people, with an IV placed. in her hand. I heard her screming from faaaaaaar away and it took us a solid hour to get her totally calmed down. I haver never seen her so upset. It scares me for how her next surgery will go.

The only thing that finally calmed her down enough to take some liquids (required for us to be able to leave) was Teletubbies. Yikes! There's a show I swore up and down my kids would never watch. Never say never, I guess.

But once she was calm and fed she was fine. She went back to making eyes at her favorite male nurse, and slept for part of the ride home. We were back before Anna even woke up from her nap.

Dr. Castro will be getting a copy of the echo results, so hopefully she'll contact us soon to go over them with us. I assume that since they let us go home that everything looked OK.

Now let's hope we stay away from Philly for at least another year!


jouette said...

poor little thing, they do get so upset, don't they? but i'm glad that everything is well, and i love how you are trusting your mamaheart and what the nurses say and don't hold too much on the test ... she might be a smidge delayed now, but she sounds like such a little fighter, there's no way she is not going to catch up with vigor. ((hugs and love)) to you all.

Mom to Toes said...

Wow, Alison! That was one long day. :( I am sorry to hear how rough the sedation was. I can't imagine how heart wrenching that must have been.

You are both tough as nails to have made it through everything you have so far.

I am looking forward to positive results from the echo.


Anonymous said...

I hope you stay far away from that place, too!

Abby, you are amazing.


The Curtis Family said...

I definitly can relate to your feelings about the next surgery. I too am scared for what this next step will bring. It definitely doesn't get any easier. In fact, the older they get, the harder it becomes (I think). Anyway, I am glad that everything went well. I don't doubt that she will physically catch up if just given a little time. Just out of curiousity, what study is she in. We have Ethan in a study for the medication Enalapril which he needs and echo and developmental testing to be completed around 14 months old. It was nice to hear from you. Take care.

---Allison (Ethan's Mom)