A frustrating day....

Thursday was so frustrating as a parent that I just couldn't even write about it until today. (Okay, I probably could have written about it yesterday...but didn't have time.) Either way, it was one of the most frustrating upsetting days I have had in quite a while.

We finally got the urine sample off to the lab to rule out a possible UTI. I dropped S off at school for the LAST time for a while (and boo-hooed all the way home!!). S LOVES school, but now that I am not working and we need to solve this health stuff, it makes NO sense to keep her in school and around all those germy kids. (And pay the 800 bucks a month now that I am "unemployed").

I spend the day "cleaning" for my cousing Emi and her family's visit. Turns out, they're not so hip on germs either so they ended up having to get their condo a day early. So my "cleaning" turned into blogging, napping, etc. until it was time to get S from school.

Picking her up from school for the last time was soooo hard. I'm going to save the story for it's own post instead of here.

We headed down to her neurosurgery appointment. After having the pulmonogist and her pediatrician "guess" it was neurological - my hopes were HIGH for this appointment. Dr. G was the same neurosurgeon that saw S when her noggin looked like this.

Here is what was frustrating. In Dr. G's practice, a PA (physician's assistant) usually comes in first to get all the pertinent info and then run it by the doc for more guidance. Dr. G usually comes in for the last few moments, gives his blessing, and sends us on our merry way.

Thurs was no different. The PA and I had an extensive conversation and I watched as her face grow more and more concerned as I explained what was going on with S. The hospitalizations. The tachycardia, tachypnea, hypertension, gait disturbances, sleep apnea, etc. I explained that the pediatrician had consulted with Dr. G and they decided to do a Flash MRI. When I relayed that to the PA, she said:

"The Flash MRI will not show us a clear enough picture - we need to do the full MRI!"

She left the room to discuss with Dr. G and they both came back it. Dr. G asked about her head shape (to which I responded that I was thankful she was a girl so her hair would hide any imperfections) and then proclaimed that we were going to do just the Flash MRI. Totally. Contradicted. The PA!!

I didn't felt heard. (We were the last patients of the day and I could tell he was itching to get out of there...) I asked him what we were looking for on the MRI and he said either hydrocephalus (but he didn't think so since S wasn't having issues), a chiari malformation (possible), and either a tumor or a cyst (not likely). He said we'd have to wait for the results of the MRI but that he didn't "think" it was neurological.

Just. Great.

Don't get me wrong (as my mother did when I explained this story). I'm HAPPY that he doesn't think its neurological -BUT it still doesn't get us any closer to an answer what is causing the issues with S. And I just want answers. Yesterday! (Patience is NOT one of my virtues!)

I also mentioned the delayed response episodes from the other day and he recommended that we take S to a neurologists for a seizure eval.

Not neurological, but go get a EEG to rule out seizures.

The entire visit was a contradiction.

And a frustration.

1 comment:

Hope said...

Wow, they are looking for the exact same things they thought Ava had. Crazy. So, the main reason they won't do an MRI under GA is because of her heartrate and high BP, right? Ava has a high HR after GA too, they have to give meds for it.

I was going to tell you that 25-45 breathes per minute are all within range for infants/toddlers to 3 yr old. Ava's baseline is 55-60 and she's fine like that. Drs usually don't worry until it gets VERY high. Also, O2 isn't a huge concern for most Drs until it goes below 90 and stays there. 17-20 seconds straight without going up is the cutoff for all the childrens hospitals around here to determine if extra 02 is even needed.

I'm telling you this because you seem really stressed, so I hope this helps. I remember when Ava was first diangosed, I flipped out at every little thing. It gets easier, I promise. I look back and think "I freaked out about that!?!?" LOL

Some of the numbers you mention for resp rate and O2 aren't horrible, and some Drs would consider them on the milder side. That's probably why they aren't doing things faster. Has she been headbobbing? or does her nostils flare when she breathes while sleeping? Is she turning blue at all? I'd look for these things. ((Hugs)) I'm know this is stressful. You're doing a great job. You are a wonderful advocate for your daughter. ((Hugs))