Wednesday, August 6, 2008

DUDE! My kid is famous!!

Today was Nathan's pulmonology appointment where I learned the ever so exciting news that Nathan's case was being presented by our Pulmonologist to the Department of Medicine at our Med School on Monday. Essentially, all of the "heads of..." departments (ex: head of pulmonology, head of cardiology, etc) and med students will be there. I wonder if our neurologist will be there...he is the head of Pediatric Neurology.

The nerd in me goes "NO WAY!!!! That is soooooooooo cool!" In fact, I believe that those were my exact words when our Pulmonologist told me today. The mom in me now realizes why it is taking so long to diagnose my poor son. This really is a tough case. A case worth "presenting" to the med school. Dude, he is so famous!

I went to today's appt with very little expectations. Nathan has never had any lung issues...just issues with the way he breathes, so I never really expect much from a "lung doctor". Funny that they are the ones that have caught the hypotonia and today's mystery...

Our pulmonologist said that he has been studying Nate's case from the beginning for the past few days in preparation of his presentation on Monday and he has found that Nathan's blood tests have never been normal. "In fact, they have been very abnormal" he relayed to me. I told him that I was aware of this, but my questions about this a couple of months ago to a different doctor were ignored. I have kept Nate's paperwork of his blood work from his first two months of life because I knew that they were highly abnormal and wanted to keep them as files for the future. And because I am a total nerd and like keeping them for reference. (Don't tell anyone, but I have always secretly loved any medical crap I can learn.)

Anyways, he is very concerned with his heamtocrit, red blood cell, protein, liver function, and hemoglobin levels. Does any of this sound familiar? If not, go back to the month of March where we went through all of this to begin with. The problem is that these blood counts got lost in the shuffle between specialists, and no one thought to look into them more. I am just so thankful that our Pulmonologist is presenting Nate's case as his "presentation" and has had the time to study him a little more than everyone else.

Nathan had a complete hemolytic workup at today's visit (a blood test). He didn't even flinch when they stuck the needle in his vein. I didn't know whether to celebrate that blood tests don't bother him anymore or be sad that a needle prick doesn't warrant even a yelp from my sweet son. I chose to celebrate by telling him that he was such a brave boy and shower him with kisses. Our Pulmonologist will call us on Friday with the results from today's blood work. If anything is out of the ordinary, we will be referred to a hematologist.

A blood or bone marrow disorder would be something that could cause his tachypnea, tachycardia, dusky/blue spells, and pale skin. However, nothing blood realted could cause his hypotnia or respiratory muscle weakness. And essentially, that is where our Pulmonologist gets stumped. You see, this Dr. has a son that was born the day after Nathan, so he is very aware of how a 5-1/2 month old should feel. Where we have seen so much strength and progression in Nathan lately, our Pulmonologist brought us back to reality with his assessment of our little man. He is still pretty low toned in his trunk area...from his neck to his hips.

Our Dr. said that it was very good that we were keeping Abby home this year instead of sending her to preschool...something that we have been told before. Nathan needs at least another year to work on strength for his respiratory muscles before he is exposed to the full gamut of "kid" germs. Essentially, kids with weak respiratory muscles often present with a weaker cough than usual. If you don't have strong cough to keep your lungs clear of the junk that accompanies colds, then your lungs are susceptible to more respiratory infections, bronchitis, and pneumonia. Needless to say, we will put stock in Purell once fall rolls around. And just a heads up...we are not supposed to pass the little man around at church during the cold season (though we will probably keep a bottle of purell at our bench when the time comes...wink, wink).

So, it was a very interesting appointment, to say the least. We should learn more on Friday about his blood levels. Personally, I don't know what to think. Part of me wants them to be abnormal so we know more of a direction to go...but then, what about his hypotonia and muscle weakness??? Then part of me want them to be normal so we don't have to add one more element into this mix. It's like what I have been telling people lately...I pray that we are given a diagnosis so we can get out of this limbo period and know more of what to expect. But I also pray that Nathan be healed of everything that is wrong with him. They pretty much go against eachother, huh?

The great news of the day is...we gave back the heart monitor! I can not even explain to you how nice it is to pick up and move little Nateman without having to pick up the monitor also. And in the words of Abby "YAY! We don't have to hear the loud beeping anymore!!" However, the monitor gave us a lot of great showed that Nathan is tachypneic most all of the time when he is awake still. And more importantly, it showed that he is tachycardic more than he should be as well. A referral to a cardiologist is still in question between our Pulmonologists...I think they are waiting to see what the hematologist says about the referral first.

So, that's our day in a nutshell. The past few months have been complete emotional rollercoasters, and that feeling just doesn't seem to end. I am anxious to see what his latest blood tests show...both the tests that were run today and his genetic tests for mitochondrial myopathy from last month. He is showing so many symptoms of both.

Please continue to pray for our little man.


Katie on August 6, 2008 at 10:57 PM said...

WILL DO. Thanks for the update.

Glad to know I have an asymmetrical friend out there! :)

dana on August 7, 2008 at 1:47 AM said...

Second post for me! (The first one was from Nate's picture last week that rendered me unlurkalbe!)

Anyway, I work for a hematologist/oncologist, so I was reading along, following your post, and was excited to be familiar with all the terminology! :) I wish the doctor I worked for was in on this presentation...he's a genius and I have the utmost respect for his skill as a doctor. He would LOVE to be a part of this!

I'll be following your blog closely (I do anyway) to see what comes of the meeting of the higher ups.

I'm truly hopeful that they are able to come to a conclusion so your baby boy can be treated in the best way possible.


Jill Chandler on August 7, 2008 at 6:39 AM said...

Wow! What a web of medical knowledge you've been working your way through. Still praying for you guys...
Love, Jill

Anonymous said...

Dear Sister Amber,
As I read, I can't help but feel so many emotions. I am so thankful for Nateman's Doctors, so thankful on how He has blessed you all. I pray every day and every night for you, Brother Jay, Nateman, Abby and Em. If my faith were as a mustard seed...I know and I know you know God is not limited....Bless you all!
Love and prayers, hugs and kisses!
Sister Dina

Meg said...

Your family is in my prayers, as always. I pray that you will soon get some answers so that Nathan can be given whatever he needs and so that your family can live without worry and unanswered questions. HUGS!

Tara on August 7, 2008 at 12:49 PM said...

I am so excited, now I can say I know somebody famous!! When he learns to write, I so want his autograph! Love ya'll!

Trina on August 7, 2008 at 6:36 PM said...

We are praying for you all! Our love is with you.

Christine on August 7, 2008 at 11:04 PM said...

We are prarying for your little man!! I hope you do get some answers soon!!! HUGS!

Mom of TWO Princesses on August 8, 2008 at 3:21 PM said...

Always in our prayers! That's cool that he is being presented like that. Hopefully this will help get you further to a diagnosis!

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