Friday, August 15, 2014

Hematology/ Oncology ( que dramatic music please)

I am just finishing up my degree at ASU and have the GPA ( I have NO idea how) to be able to at least apply to a few( like 2) local Physician Assistant programs in the Great State of Arizona. If I can't get into either, I will have to keep applying or not go because I can't leave the great state of Arizona either. (Secure borders and all :) Just kidding! Long term care) Anyway, having a child with with extra needs means we meet a lot of people who's children are sick. Some terminal, some with genetic craziness and some with just really bizarre happenings.

As I become friends with these kids moms, I get curious and we talk about our kids conditions, and we compare notes of what doctor is awesome, what doctor could brush up on his people skills and what doctor could just brush his teeth. ( Yes doctors, there is an unground group of SN moms who will either make or break you. It is not limited to specialists and it is a NATIONWIDE thing, so be afraid!)

With these conditions also comes Dr. Google. Yes, you know him,  the ones that say that cough is really the start of Ebola. That is how it works.  Everyone does it.
By no fault of the "real" doctors we see, sometimes googling just helps a soul! But the other day, not even google could help.

Grayson, bless his little heart and GI system, eats rocks. Not just" oh look, your kiddo has a rock and some sand in his mouth" eat rocks. We are talking chewing off bits of the rock, chewing it into powder and swallowing the rock particles. This includes things like hiding in the back of the house to chew on the ledge of the window where stucco can come off, licking the rocks on the pillars at our house and then of course the whole, just sneak the big old fat boulder into the house because we won't notice you in the corner EATING IT, rock problem.

We took him in a while ago and was referred to a PICA clinic.What a bust! Ignored the problem, like awesome parents and dealt with smaller things like seizures and botox and such. ( Sarcasm inserted) But having no neurotypical ( this is what us "special" parents call kids with no magical neurological "gift") sibling or anything to go off what is right or wrong, when we found Grayson screaming and screaming and screaming all the time we thought that there might be something wrong.

Turns out, he screams cause he is three. Hmm. Turns out however, they were less than ok about the continued rock eating and the extreme pale skin my son is sporting. So decided to draw blood. Just a poke. And it evoked no tears from either of us. Came back that he was a " little" on the anemic side.

Fast forward to going in again because he is still screaming and screaming and screaming ( Turns out they do that more when they are tired. And they also sit on their brother's head while he is under water because they can and are three) But it is still OK that he is screaming. They notice no follow up on the anemia was done ( read: I didn't realize they want me to come back and 2) we have been moving and having botox and having LOTS of seizures so I figured a little dirt and rocks... whatever)

Again a finger poke..... Anemic.

Go get more blood work.

3 days after finger poke we go get the blood work done. His hematocrit is LOW. Like really low. We also asked for a CBC and along with that comes the WBC  or white blood count which helps determine if the body is fighting something off.

I get a call and a voicemail saying to call the office. The Nurse practitioner is gone for the day but the MA ( medical assistant) was given the information to share that I needed.  The conversation went like this:

"NP said that Grayson's hematocrit has dropped even further and he needs to get in for testing as fast as possible. We have sent over a referral form to the PCH hematology and oncology. He needs to get in as soon as possible and they are looking over his records right now. What family history do you have with things like, childhood cancers or renal failure?"


I don't even need google to figure out what the heck is going on. I ask her nicely for the CBC and white blood cell count. See, if I know that, then I won't be blind sided by anything that is life threatening before walking into oncology.  She insists that she can't give it to me, that I just need to call the PCH number she gave me and get on the schedule.

I hang up. Cry. Sob. Scramble to call anyone I know that has a MD, DO, PA or NP at the end of their name. I just need to know what the other levels are at!! I make a few sobbing phone calls. No answers. I am throwing up at this point ( see I have a anxiety problem... more about that later)  more sobbing and another call back to leave a message for the PA to call.

While doing that I was on with hematology and they were working to get him into the right place and would " let me know" where to go and when.

PA from our peds office called. He was trying to get to the phone to call when he saw the information that the girl DID give me and said she is going to be in panic mode. And he was right. Cause he is cool like that.

I was horrified that Grayson might really be sick and that this whole time we let him eat rocks and not poop for weeks and yell at him for screaming ALLLLL the time and now he had CANCER!! What!! What kind of a person was I!! ( those were the thoughts I had.)

Rest assured, the long story you just read was all just drama. Grayson is FINE. He has a LARGE hematocrit problem and he either doesn't absorb iron, has GI issues contributing to his lack of absorbing nutrients, is Mal nourished ( you know.. no big deal) or has a Mal absorption problem. He needs to see hematology and oncology and will. But he is not "STAT" like the nurse indicated. It is more like let the real kiddo's get in.  He probably could use a transfusion. It is pretty low, but first find the root of the problem and move up from there.

A huge thanks to the people who saw the ugly face cry when my worse fears were cancer. Another huge thanks to TJ Barnett who got 2 voice mails while ugly face cry was happening, Aunt Nicky who was trying to figure out why ugly face crier was still crying and call to help more and mostly a thanks to the PA who thinks I am smart and knew that oncology+low hematocrit+ I won't give you any more info + STAT= this mom is crying and freaking out and called to figure out what in the world was REALLY going on with me.

awwww.... Stupid Iron

1 comment:

jennohara said...

I have to say, this post made me laugh! I'm new here...just stumbled upon your blog! I've been blogging for a few years about my little family at, mostly about my Hanna who has a funky genetic makeup. :) Nice to "meet" you, and looking forward to reading more about your blog. This was the first post I read!