GLUTEN IS DUMB !

The Little Warrior is home from the battle field !

He made it back to his bunker this afternoon.

The battle field assessment and de-briefing report alledges but cannot confirm or deny: new meds to settle down the suspect celiac disease, heavy pain killers temporarily and an emphasis on Gluten free dining.....FOREVER !

He will continue as before on the Methotrexate injections once a week (given at home) and Remicade IV therapy every 8 wks up at PCMC.

An MRI done this morning didnt show anything significant, thankfully. And the Biopsies done during the scope were mostly good too, according to James who was there to hear it all from the Docs.

I worked my 12 hr shift today and missed the whole hooplah. But was there in spirit, as most working moms are relegated to be.

This short stay at Primary's I know is largely due to the many sincere prayers from all of you on Marky's behalf. I fully acknowledge God's healing power and tender mercy with each day we are graced with.

Love to all of you, netti

Wednesday evening--

Marky just got back from his Endoscopy thing.

Dr. Pohl showed me the pics of the tour through his GI tract.

Several areas of bleeding lesions which are generally associated with celiac disease.

He is mostly convinced that this was all triggered from the gluten challenge.

He even suspects the possibility that celiac disease triggered the auto-immune response that triggered the fibrotic sclerosing retroperitoneal spindle cell tumorous whateveritwas crap that took over his life !

All of Marky's old "teams" that swarmed around him during the last "war on terror" up here are back coming in to see him.

After all, he IS a legend up here, "the Miracle Marky", the "wonder boy",

the "LITTLE WARRIOR" !

One group of Docs is ordering a bunch of other lab tests to rule-out some more stuff. He will get an MRI tomorrow, too.

So we will hang around up here for at least another day or two.

Blessings are continuing to come to our little warrior as he fights the good fight......again.

Wednesday 11:30 am--

Marky is resting with some IV Morphine on tap.

He is scheduled for an EGD (scope down the throat) at 12:30 today.

They'll look around again to see if anything has changed.

The doc thinks it may all be related to his recent "gluten challenge", even though the blood tests dont manifest it.

They will do an MRI on his belly tomorrow sometime to try to get another look for clues.

I am able to sit up here w/ Marky today. My work load was light today so i got to leave at 9 am and come up. James has gone home to rest and take care of Sam when he gets home from school.

Thanks for your prayers

Markys pain returned last night with a vengence.

He was actually admitted to Primarys as an inpatient this time for more agressive pain control and tests.

James took him up there and I stayed with Sam and Scott.

The Dr. said they would likely do some kind of scope on him today to see anything .

Last night before they left, Bishop Rupp happened to be here dropping Scotty back home after home-teaching.

We invited him in to give Marky a blessing before he went up to the hosp.

We all sat at the foot of the bed while Bishop Rupp layed his hands on Markys sweet head.

Shortly after Bishop started with his prayer, our "angel Sam" very softly crept across the bed and got up on his knees next to Marky and PUT HIS HANDS ON TOP OF THE BISHOP'S .

He assisted reverently until the bishop was done.

I was amazed at the sight of this dear heavenly angel helping to minister unto his brother.

A task i'm certain he came to this earth to do.
\
All that the bishop said after he took his hands down from Markys head was ....
...."Thanks for the help, Sam ".

It was a moment i will treasure all my days.

Wish you couldve all been here to see and feel .

Love you all. Netti

Tues. AM--

The CT scan showed a small amount of ascites (fluid hanging around in places it doesnt belong) in his abdomen....otherwise nothing significant.

His pain was progressing as the night continued and he received two doses of Morphine.

The docs are uncertain of the cause of these current symptoms.
perhaps its the "undiagnosed" celiac disease. Or maybe the nasty sclerosing fibrotic crap raising cane again.

If you remember, non of the diagnostic scans ever showed any of his disease before.

Only the exploratory surgery.

At 1:00 this morning we left for home with prescriptions in hand.

A round of steroids, some kind of non-narcotic pain meds and something else i cant remember.

I had to be at work at 7 am today, so James will manage the care of the boys.

UPDATE at 8 pm, Monday night----

So far, the blood work is turning up with nothing significant---thankfully.

Marky is still drinking the icky contrast for the CT scan. They will get him in for that within the hour most likely.

His pain is still quite bad. They gave him some Zophran--the wonder drug for nausea.

His eyes crossed within minutes after the good stuff hit the capillaries !

Thanks for all the calls of concern and support.

Sam is at home with a fever, trying to share the spotlight with Marky, i guess. James is tending to him, along with Scotty.

Thanks to all the neighbors that are pitching in with offers to help.

Will update after the CT results. Probably will be a couple more hours.

Love, Netti

GOT MARKY UP AT PCMC ER :

GETTING IV FLUIDS, TESTING HIS BLOOD FOR ANYTHING.

WAITING FOR A DECISION ON WHAT TO IMAGE AND HOW TO IMAGE IT....ie CT scan or Ultrasound.

He's having "pain in his liver" as he describes it, and severe nausea.

I feel relief knowing that he will be taken care of now up here. No more ringing my hands wondering whether to bring him up here or not.

He tried to go to school this morning. Made it till noon, then came the call....."my liver hurts, mom".

We will wait and let the experts do their magic.

keep ya posted......love, lynette

UPDATE: Doc just came in and ordered a CT abd/pelvis. Marky gets to drink some "contrast" to make his intestines show up. Then wait 2-3 hrs and do the scan.

Saturday---

No change in Marky's status.

He's no worse. That's good

No Better. Not so good

His buddy Jonah came over last night to cheer him up and play a little.

Jonah keeps a vigil over Marky and reports any signs of anything when it comes to Marky's condition.

He is a devoted friend and is so amazing to watch as he worries about Marky.

Im working again this morning. When i get home i'll assess the patient and try to decide whether to take him up to PCMC.

Something is not right. Can feel it in my gut. And his eyes are sunken and glassy. He feels like throwing up all the time. His headache is better, no spots anymore. Just complaining of "crappiness" and nausea and his liver hurting.

Ive been nervously eating all the cookies at work and raiding the fridge for Diet Coke ! ......What else can I do !

Friday the 24th of September:

Marky's been ill all week with a headache --seeing spots, and nausea.

He says his "liver hurts".

We've been on the phone every day with the Docs up at PCMC trying to figure out what to do.

He had his Remicade infusion last Fri. and has been feeling crappy ever since.

They drew a bunch of blood for lab work and it is all looking good, they say.

So we are all pacing back and forth ringing our hands with worry.

ESPECIALLY ME !

I asked him last night if he thought I needed to take him up to the hospital.

His reply was....." you probably better , cause my liver hurts" !!

I grabbed Scotty and we all knelt in prayer. Scott prayed for him to feel better and all that other good stuff. (I always make them pray in times of peril---I tell them that God listens to a child's prayer WAY BEFORE a dumb adult's ! )

I did not take him up to the "mountain" yet. Still wringing my hands. But have another call into the Docs at Primary's.

Keep ya posted.

Pray for Marky, please..........Lynette

Marky is back in "Theatre"....

We are spending the day at Primary Children's getting his Remicade infusion therapy.

We have been up here since 0930 this morning. it's now 1500 hrs....(thats 3:00 military time, for you civilians) !

He's been a trooper, of course. Mostly bored. He has to lay in bed the whole time.

On the other hand...."mom" has been much less manageable. ! ! !

The anxiety accompanied with hauling a child back up this hill along with its all too recent memories is bringing out all the coping skills that were waining at

best in the first place !

Large quantities of chocolate covered almonds is the "coping skill" du jour for me !

Marky has been pinching me everytime i try to cry !...a technique that has served us well since the introduction of the "pinching diversionary tactic" was suggested by my co-worker, Angela !

Every time the tears are threatening.....you get someone to pinch you ......takes your mind right off whatever it was you were getting ready to cry about !!!

Marky and me are getting to be quite the team at it !