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.

Quick Health Update!

We just got back from a visit to S's favorite doctor, her pediatrician, Dr. V. Yesterday both M and I noticed that S seemed to take longer to process what we were asking her to do. When you ask her where her nose, ears, etc. were, she would look at you - pause and then respond. MUCH longer than before. It seemed to last quite a while - atleast most of yesterday afternoon and early evening. We were obviously concerned so I decided that I would call her pediatrician to see if she thought it was a big deal.

This morning when I got S up, she didn't look or sound good. She was fussy (it was early) and when she cried, she sounded like a seal. My first thought was croup. Actually, if the truth be told, it was "oh crap croup!" But she seemed to settle down. She was huffing and puffing, which isn't really normal I know...but she went with me to my weigh in appointment (down a total of 18 lbs! Yeah me!!) and then I took her to school.

Around 2:30 I couldn't stop thinking about S's delayed response, so I picked up my cell phone and it rang. It was Dr. V calling me!! No joke. She was calling to tell me that the neurosurgeon and nephrologist agreed to do a Flash MRI on S to see what was happening with her noggin. Her neurosurgeon would write a script for the MRI at our appt on Thursday. I explained what was going on with S and she wanted me to bring her in at 5pm. Just to be safe.

So....the long and short of it...

1. S has some fluid on her ears, but it is clear (not an infection) and might explain some of her delay but not all. Dr. V is going to let the neurosurgeon deal with that one on Thurs.

2. S might have croup or at least a cold. If she has any difficulty breathing again tonight, we MUST go to the ER. Because of her hypertension, treating croup would require steroids. Steriods increase blood pressure. S would have to be admitted for treatment.

3. S possibly has another UTI. We will be taking a trip to the lab tomorrow to see for sure. S is prone to them for some unknown reason and so we are suspicious since she seems in pain.

So there you go. Possible fluid is the cause of her delay. Possible croup but be ready for an ER trip and possibly a UTI.

A good time is definitely NOT being had by all.

And funny: Right as I was leaving the doc asked for my number. I said, "Come on Dr. V, you don't have us on speed dial yet?" She laughed and actually admitted that our number is the only patient one programmed on her cell phone. Yep, that's how often she calls us. At home. In the middle of the night. She's fantastic.