Tuesday Zach got to spend about 16 hours at home before he had to go back to the hospital for more tests. They did an ultra-sound and found there was fluid in the stomach so he will be back in tomorrow to get that drained and a new tube put it the PNT. It will require him being put under again, but they consider it a same-day surgery. Providing they don’t have any trouble with the breathing tube, he could come home again tomorrow night or …….. He is on less meds now, but they have to be given at precisely the exact same time everyday. Stacey will have timers going off steady!

Today a Boy Scout Troop dropped off some xmas gifts for them. Zach got a new red fire truck and has been playing with it all day. He loves to fill it with blocks and then tip it over and take them out. He was happy and beaming his famous smile, he doesn’t realize what is going to happen to him again tomorrow. Kiley got a light-up drawing desk and has been busy drawing pictures on it all day too.

We hope and pray all goes well and he will still be home for xmas.

Gma E

Today Zachary was able to come home. Kiley was very excited, her whole family is home. There was a little concern though. Last night Zachary had urine leaking from the entrance hole of his PNT(long words not important). Basically, it is a temporary(6 weeks) tube they placed during his 3rd surgery. It drains his urine out a tube to prevent pressure being placed on his new urether connected to his bladder. They ran tests this afternoon to check its placement and feel it is ok. Yes our fingers are and toes are crossed.



Tonight, Stacey was busy cleaning out the pre-transplant drugs from the cupboard. Making room for the new one’s, which is considerably less! No more three step formula, that has to sit for 4hrs than decanted off. Yea!



Tomorrow, we will have to return to the U of M for a follow up appt. with Zach’s Kidney specialist. Than back home to play with Big Sis Kiley.

Wade-

Zachary is HOME!! What more can I say.



He had the full blown Famous Smile, Mom and Dad were all smiles and Kiley….. Well, she was so excited. One of her first comments, after she quit bouncing off the walls and jumping up and down was, “we’re a family again!” It was one of those scenes that brings tears to your eyes, it was marvelous.

His counts seem to be good and the leakage that was coming from his tube is overflow because of the lack of room in his abdominal area. They of coarse will be watching this, but let him come home. However, he has to go in an see his nephrologist tomorrow morning – !

That’s it for tonite, lets pray that it is only going to go up hill from here.

Gma E

Zachary’s First Birthday last 2 Days!

The Benefit for Zachary was on his actual birthday, not planned, just happened that way. It was a smashing success. It far exceeded any of our dreams of donations and people turning out, so many wonderful people showed up that we ran out of food after the first hour. Talk about embarrassing.! We have lots of pictures and video so hopefully one day Zach will be able to enjoy it.

On Saturday he had a quite birthday in the hospital with just his family, grandparents, uncle and godparents. We had pizza and cake, Zach got some tastes of the frosting!! However, he really was enjoying his day, he sat in his favorite wagon and also in a highchair. He was feeling really good and that famous smile was all over his face.

Yesterday he also locked his knees while leaning on the back of the sofa and gazed out the window. That was a first stand by himself and Stacey was tickled pink. He is also shaking his head to “No No”, that’s cute now but…….

Zach’s counts have been really good, the diarrhea is gone and he is unhooked from all machine things except his feed pump (don’t you love my medical terms?!) The kidney is working good, however he is still retaining some fluids which they say is normal. His immune system is really low, so he needs to stay away from colds, crowds and shopping centers.

I am reluctant to say this, but, they have said he can come home tomorrow (20th). However, we have been on this roller coaster for a year now, so this could change within the next 24 hours again. Therefore don’t get too excited, but it certainly would be nice for them to be home for Xmas.

Thanks for your continuing prayers.

Gma E

Wow, the benefit last night was a lot of fun! It was nice to see so many people come out and support Zachary. I took a few photos from the event and posted them here in Zach’s photo gallery. If anyone has photos from last night to donate, email them to Jen Frisby and I will gladly add them.