Surgery did not go as planned :(

If you have been following us on Facebook, you might know that Ezekiel’s surgery did not go as planned... As we mentioned in our last post, the plan was to do work on his bladder and urethra in order to prepare for the kidney transplant.  But when they got him in the OR they could not get anything into his urethra to reach his bladder...

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This surgery was our only hope of saving his urethra so he could be like any other boy -peeing all over the place.   The doctors did give us a couple of options that could possibly happen at that time of transplant or when he is older like 5-7 years of age. None of those option have a high chance and all bring about their own issues.

David and I are heartbroken that this surgery did not work.  Ezekiel will now most likely have to grow up with a urostomy bag. Just accepting the reality of that bring out all of our emotions again and we find ourselves randomly crying when we think about it or hear something sad. We know it’s not the end of the world and that he is here with us but we had so much hope in this surgery.

Other then that, Ezekiel did very well with the surgery. When we got to go back in the recovery room, he was just so peaceful while he was still sleeping. As he began to wake up he was humming a soft hum. It definitely made us feel so much better to see and hold him.  He was a little gaggy and fussy after he fully woke up but after giving him some pedialyte he fell right back asleep in my arms.  O how I love this little boy. His smile truly melts hearts.  

What next? Now we wait until he gains enough weight and is big enough to for transplant.

Thanks for all your prayers, we covet them and feel them. Aside from the surgery not going well, everything else went very smoothly for us. Ezekiel did so well in the car and didn't cry once. Also, he is starting to get an appetite again and is eating more on his own. Lately we have had to put his full 4 ounce feeding down his G-tube but the last week he has been eating it.


Please continue to pray that he stays free of any sickness and he grows.  You can click here for current prayer request. 

http://cota.org/campaigns/COTAforEzekielB

We are partnering with Children's Organ Transplant Association (COTA) to fundraise for Ezekiel. 100% of the funds go to Ezekiel for transplant related cost (lodging, food, travel, medications, etc). COTA’s partnership is lifetime and gifts to COTA qualify as 501(C)(3) and are tax deductible to the fullest extent of the law.

My sister Shannon Soucie

My sister Shannon Soucie is creating a committee that will, through COTA, fundraise for Ezekiel. Aside from needing any volunteers who want to help, we have two specific position on the committee we need to fill:

• Web Master -Update and customize COTA’s donation page
• Public Relations - The lead promoter/communicator for the fundraising events

**All positions will be provided with proper training from the COTA team. (it's pretty amazing actually!)

If any of these two spark an interest, or you are just interested in helping out, find me on Facebook and send me a message [https://www.facebook.com/katiebell711].

Feeding Zeke in the car

Zeke in his surgery gown

a trip to see Santa at BassPro