Thursday, March 8, 2012

We have some answers...

Justins biopsies and blood work came in today and we finally have a diagnosis.. Good news is all the biopsies were clear!! And his blood work showed all his inflammatory markers that were really elevated are now back within normal range!! So his diagnosis is... Mesenteric Adenitis with IBS/IBD

Basically Justin contracted an infection, my best guess around the holidays.. The infection is what caused his Pneumonia when it traveled to his lungs and then moved into his lymph nodes in his abdomen.. On top of this his IBS/IBD was inflamed and he was suffering from his chronic constipation. All of these things compounded on each other and basically did one heck of a number on Justins little body!!

So what is Mesenteric Adenitis?? In simple terms Mesenteric adenitis, sometimes known as mesenteric lymphadenitis, refers to a condition in which the lymph nodes in the mesentery of the abdomen become inflamed. The mesentery is the tissue that connects the intestines to the internal lining of the abdominal wall.

While reading up on it I saw something that kinda made me go "really".. The two major risk factors for mesenteric adenitis are...
 - Childhood
 - Male Gender

"Really?!".. :/

So whats the game plan and future outlook.. Basically we will treat symptoms. We have some medication Justin will take for muscle/intestinal spams.. The BIG long term treatment is keeping his IBS/IBD and chronic constipation under control. If we do this his likelihood of a recurrence will go down!! His doctor stressed it will take time.. It will take weeks for Justin to slowly build his strength back.. It will take months for the lymph nodes to go down and as long as they are big, he will have the pain! But I will say we have already seen some improvement.. As far as his IBS/IBD he will be on daily "poop" meds as we have lovingly referred to them around here! We have also cut out whole milk and switched to soy. We do not think he is lactose intolerant, but we do think whole milk is too hard on his system. We will also limit carbonated beverages, spicy foods, and such! We have already been doing this over the past weeks and it seems to help!!

Thank you all again for you thoughts, prayers, and concerns for Justin.. He is one tough little cookie and hes going to come out of this with that winning smile we all know!!!

Monday, March 5, 2012

A Few Upgrades

The past week we have been doing some I guess you could say "upgrades" to the boys room.. We got rid of their old broken beds for a new twin over full/futon bed.. Dropped the old dresser, door handles, and bulky tv and replaced them with a new hidden in the closet dresser, new desk and arts center and a NEW flat screen.. I teased the boys they were "movin on up"

Nick is Joes Right Hand Man
Loves to help fix ANYTHING!

New Bed - New Mattress is to be in this week!

Desk & TV

I still have about a dozen
(no joke)
Team Pictures to Hang Up!!

Also we had some pretty ugly storms blow threw Friday night.. I snapped this picture at sunset.. Middle TN got out ok, but our neighbors to the north (KY) and south (AL) got hit hard!!!

Thursday, March 1, 2012

A look from both ends..

OK not the best title, but hey that is literally what today consisted of..

We had to arrive bright and early at Vandy Childrens Hospital this morning for Justins Endoscopy and Colonoscopy! Now these test were scheduled for April 26th, but after Justins severe episode at school last Thursday along with another bad one Wednesday morning around 2am his GI doctor bumped him up to today! So we arrived around 5:30am and got checked in. Justin got his cool green gown with matching canary yellow socks (which he begged the nurse to let him take home)!! He was all smiles after a rough day/night before of prepping for the test!! Let me tell you, and this is way too much information, but having to give your almost 10 year old son 2 enemas as he cries his belly is hurting is like stabbing a knife in your own heart!! But to our surprise when he woke up this morning he felt good. I guess because there was nothing "inside" to irritate anything!!

Justin All Smiles Before His Procedures!
(I swear this kid will smile through anything)

So after getting checked in, changed, and talking to the nurses, GI team, amd Anesthesiologist they swept Justin away to sleepy land!! I must say I was VERY impressed with the whole staff today at VCH!!! After about a 45 minute wait his GI doctor came in to talk to us..

Good News: His intestines and colon looked good. They saw no visible ulcers, polyps, or bleeding.. She did take some biopsies of a couple places and we should get those results back within a week. She also drew more blood work to recheck some labs!

Bad News: More waiting!!!

Right now his GI doctor is leaning toward a diagnosis of IBS (like mother like son) with intestinal spams (we got a new med today to help with the spasms) along with Diverticulitis (its when pouches form in the wall of the colon and these pouches get inflamed or infected).. She thinks the infection that caused the Pneumonia might have also caused the diverticulitis.

She stressed to us this is just her gut feeling right now based on what his past labs showed and his symptoms along with her findings today. We will NOT know the full diagnosis until the biopsies/labwork come back!!!

After talking to the GI doctor we got to go back to see Justin who was still knocked out, poor guy!! After about an hour and some sips of a cherry slushy he got to get dressed and ready to go!! He was in alot of pain from all the air in his belly from the scopes!! But once we got home, ate, and took a good nap he was doing very well this evening!

So Sleepy

I want to say thank you to everyone that called, texted, messaged their prayers and support.. This has been the hardest 6+ weeks of my life. I have watched my baby suffer in pain, cried with him, fought for answers (and still will).. But the love and friendship I have felt the past 6 weeks is overwhelming. I knew Justin was a very special boy, but I had no clue how he had touched friends and family. They worried, cried, and prayed with us and that is something I will never forget!!!