On Thursday, July 18th it finally happened… THE TRANSPLANT!!! I (Katie) was able to see Zeke off to surgery and give him one last hug right before they rolled us back into the OR.  Zeke’s surgery took longer than expected due to taking his right kidney out.  They ended up taking out my left kidney and putting it in Zeke’s right side.  I was able to get over to see Zeke the next day.  I stayed in the hospital for 3 nights and then was discharged.  Overall Zeke’s new kidney is working really well, praise God!!! His Creatinine levels (a blood test tells us how well his kidney is working) have normalized and it’s working well! 

Recovery of transplant has definitely been harder for Zeke due to his Prune Belly (Eagle Barrett Syndrome), which is when his abdominal musculature was not formed properly due to his lower urinary tract obstruction when he was in utero.  It also causes his digestive system and the peristalsis to go slower than normal, which has been huge complication for him.  All the doctors have been aware and keep saying that this is a normal and have seen it many times before.  Our urologist keeps saying for any type of surgery he will always take at least 2 weeks to fully recover while a normal kid would take 3-4 days.  I never realized or even thought we would be going through all of this.  It’s heartbreaking to see him like this and be in so much pain.

Zeke has been very strong and we are able to still have fun though all the pain.  We have blew bubbles, made bubbles in water, played with Buzz Lightyear and Woody, colored, and watched the movie Boss Baby over and over and over again.  He loves to help all the doctors and nurses listen to him with the stethescope, and take his temperature.  He’s able to shoot the cover off the temperature monitor like a dart, which is entertaining as well. 

We started physical therapy and occupational therapy now since he’s doing a little better.  We have a big floor mat where we are able to get him down on the ground. He hates it and constantly signs “bed” and says “bed” the minute we get him out.  He’s very tense.  He walked a little bit today between David and I and was able to scoop him up in my arms with not lifting him, which made my day.  My 10 pound weight limit for a almost 30 pound kid is not very easy to adhere to but I’m managing.  I can’t wait to be able to just scoop him up! 

Zeke has hit some road blocks and slowly building bridges to get through them.  We are still out of the PICU and on a general floor but he has not been able to tolerate feedings even through his G-Tube, we have tried a couple of different formulas.  He has thrown up often and his abdomen is very distended but soft, along with also having diarrhea. His abdomen is the place all his fluid goes because it’s the path of less resistance, due to his Prune Belly.  We recently discovered he had C.Diff (inflammation of the colon caused by bacteria), which is explaining a lot of why this is happening.  We switched antibiotics last night so hopefully it works quickly.  We have noticed his diarrhea slowing down a little, which is good.  We are also giving his tummy a rest by not feeding him and starting him on TPN and some lipids.  We will maybe start to feed him a little tomorrow but very very slowly. 

The girls are doing well with my sister. Thank goodness for an amazing sister and brother-in-law to take on another 2 kids full-time.  They’ve  went swimming, rode their bikes, saw a beautiful sunflower field and even went school supply shopping.  They are having lots of fun with their cousins and we get to FaceTime with them often.  It’s wearing down on them I know and can tell but hopefully soon we will be out of the hospital and the girls can come see us.  Pray for peace for the girls as well.

Also, I (Katie) am doing very well. Still in some pain when twisting and turning but overall good. 

As we continue our journey, please pray for….1. C. Diff infection goes away quickly, 2. the remaining fluid in his belly absorbs and he can get rid of it, 3. He will tolerate his feedings and 4. his pain will decrease with movement so we can PLAY! 

 

Keep posted with updates on our Team ZekeB PAGE at https://www.facebook.com/TeamZekeB/