UPDATE!! Miracles happen.. Zacharys creatinine is now down to 1.8!! We are rechecking later to see if its a lab error.. We are dancing!!!!! Pray that this is for real…They think because he has not eaten anything for days and they are doing a clean out. His Kidney is being flushed.. we just pray when he starts to get his J-tube feeds again his Kidney can keep up and keep flushing out the toxins.

My crazy BOY!! he was singing

My Montage 10/23/09

Zachary had another all right night.. He woke up a couple of times hallucinating and feeling sick but was able to get some good sleep. Zachary is on his 3rd bag of Go-lightly and is still not cleaned out. He has gotten 2,155ml. This is CRAZY! The DRS have never seen a child on go-lighty for 3 days and not be cleaned out. Zacharys bowels are very very slow.

Zachary is now down to 20.1kg !!! which is Awesome. His dry weight is 17.8. We are almost there….I worry with him not eating or getting his j-tube feeds for almost 5 days now his dry weight is even down more.

Thank you everybody for praying for me..

We are still waiting for his lab results.. I will update when I know more.

Thank you for all your thoughts and prayers,

Stacey

My crazy BOY!! he was singing

My Montage 10/23/09

Zachary had an AWESOME night.. They gave him Go-litley at 4pm last night thinking he would have results. He did great until 4:30am and got up to do is duty. Yes, 12 hrs later.. But know every 2 hrs he has been going. The DRS want 3 clear stools before he can eat and before they will stop the go-litely.

Zachary’s Kidney numbers have not changed either, He is sitting at 2.2-2.3 which is good.. His Liver and spleen are also not as swollen and his labs numbers are almost normal!! Yipeee!!

Zachary’s tummy which was 67cm yesterday is now down to 62cm!! Another Yipeeee!!! The bad news is he is still up 3 lbs in his weight, his Kidney is still not able to get rid of the fluid on its own. The DRS upped his Lasix to give his kidney a little kick.

Zachary has also not been hooked up to his feeds for 2 days and has not tolerated his feeds full strength for about 5 days.. We are talking about starting him on TPN Which is a nutrition that he would go through his Dialysis catheter. Until he can tolerate his feeds again

Thank you for all your thoughts and prayers, This is going to be a long road.. But everyday when I see him smile I know that God has a plan and everything is going to be OK.

Stacey

My Montage 10/23/09

Zachary’s tummy is still pretty BIG.. They just did another Chest and Tummy X-ray..
The result.. His tummy is still full of fluid, but now he has Bilateral Pleural effusion.. So they see alot of fluid pockets around his lungs.
The Tummy is still full of barium from Oct.5.. These DRS have never seen Barium in somebody this long..
The plan is to give him GO-Lightly.. Not Fun.. In hopes to clean him out.

Zachary is also still throwing up and is very nausea. I can’t wait for all this to blow over and see him feeling better soon.

The State Health Department has new rules for hospital visitors..
Zachary cannot have any visitors under age 16.. Because of the SwinFlu..
And then for our family, no one under age 5!! That means I can’t see Austin unless I leave. I talked to the nurses and they said, lately we have been living here so they would let us have special visits once in a while. But they would have to screen Both Kiley and Austin before they even come in.

We just need to get out of here..

Thank you, for all your thoughts and prayers,
Stacey

Zachary has a visitor...He was just a little scared..

My Montage 10/23/09 My new Montage that i just made..

UPDATE… I am PISSED OFF.. The U of M failed to tell us that Zachary is also STILL in Acute rejection along with the chronic!! We thought that he was just in chronic and that the Kidney was to damaged to repair!! That is NOT the case! He is STILL in ACUTE and the Uof M decided without my permission to NOT treat it!! Because they feel that this Kidney is to damaged to repair.. Well, It would of been nice to inform ME!! The DR. That is on thought that I new..she was shocked.. The Plan is for me to sit here and watch it go…
I know that it is a bad Kidney, and I know that he needs a new one.. It just would of been nice to know the TRUTH…

Sorry I need to vent once in a while..It is just so hard to sit here and watch this happen….

UPDATE…. Zachary’s Liver function Labs are off.. The Drs. feel that his body is confused and just needs time to settle down. They will be checking his liver function everyday.
The spleen.. They have no clue why his spleen is also in larged..

Zachary had an ultrasound late last night.. The results were not good. His Liver and spleen are very enlarged and his little tummy is full of fluid… Zachary’s body is under a lot of stress from all of his treatments “plasmapheresis, IVIG and high dose steroids”. That is body has no clue what to do..I fear that his body is trying to fight off his other organs.. The DRS are also concerned and have order a whole set of labs that are being drawn right now.

Zachary needs a lot of prayers.. his little body is struggling…

He needs to be home with his family..

Zachary is very swollen.. his tummy is huge and the right side of his body is more swollen then his left. He also has a lot of fluid around his

My Angel...

Please pray for these DRS to come up with a plan.

Stacey

This is Zacharys huge tummy...

My Montage 10/23/09

Zachary is still feeling pretty sick and is very swollen… he is up almost 3 pounds in just 2 days!! The DRS are conserned and order a catscan and a ultrsound for tonight.

His blood pressures are also up.. which is not good , but we knew this was going to happen..

The good news.. His creatinine “kidney function” has not gone up!! he is so far sitting at 2.2!!! it is still way to high.. but we will like to keep it there for another 3 months. To hopefully skip dialysis and get him to Transplant right away..

We are planning on testing people in about 3 months or when Zacharys body starts to settle down..

If you would like to be his HERO.. Please stay tuned… We welcome everybody that would like to follow Zacharys journey.

Thank you for all your support and prayers,

Stacey