Saturday, Jan 23 we had Kiley’s birthday party. It was great and everyone had fun! My parents stayed home with Zachary. He had a low grade fever the night before and we thought he was coming down with a cold, runny nose, etc. When we got home his temp just wouldn’t go down with tylenol, which the Dr. on call recommended. After hours of it going up and down and several calls to him, at 10:30 p.m. it was 104 and we were on our way down to Fairview again. Zachary was given antibiotics, he responded well and the fever broke. As it turns out he had a infection in the kidney. Having a PNT(tube coming out his side going directly into the kidney) unfortunately creates a great opportunity for infection. The plan is to remove the tube and replace it with one that is internal. This all leads me to my title of the day. As an in-patient there is no set schedule for surgery. Just like the Drive-thru, they always screw you! Yesterday, (25th) we were told he would go down between 8:00-9:00, on the 26th, so they stopped his feeding pump at 3:00 a.m. They woke Stacey up at 5:00 a.m and said he was going down, then came back as they had changed their mind. Now the word is, it will be sometime this afternoon. I already know it will be more like 7:00 tonight and Zachary will go without eating all day.

Wade

Zachary is doing great. We have been home for almost 2 weeks but things are going to change again. Zachary will be having surgery next week, we are not sure what day but they are trying to get him in by Wednesday. Zachary’s PNT tube is only supposed to be in for 6 weeks, but has been leaking, they think the bladder is still refluxing urine back into the kidney, which is not good. They are planning on repairing his bladder so they can remove the PNT tube, which he gets tangled up in every day!!! Zachary is getting stronger and stronger every day he is almost crawling forward. We are celebrating kiley’s birthday party on Saturday at cheapskate. Kiley will be the big 5 on Jan-25.

I am happy to say we have been home for eight consecutive day’s. Hurray! Zachary is getting stronger everyday. He can scoot around on his butt, by bouncing himself up and forward. He is able to get from a sitting position to his knees. Also, he is starting to crawl backwards. Zachary is also becoming quite a hairy little guy. This is because of the predisone( a steroid) he takes. I hope that doesn’t mess up his Olympic eligibility. His eyebrows are becoming very dark and hair is growing on his head as well as his back. He will be on predisone his whole life. They will ween him down to a lower dose. Then he won’t be such a hairy little dude.

Kiley seems to be doing better as she is getting over her bladder infection. She had a sleep over at the neighbors last night. I checked on her this morning, when she heard it was me, all I heard was “I don’t want to go home”.

Stacey and I are taking advantage of these day’s home trying to get the house organized. The BLACK HOLE as my dad refers to it. That is really not fair though, time has not cooperated with us since we moved in.

Wade

Zachary is doing great. He pulled him self up to a standing postion in his crib last night. How exciting is that!!!. If you help him to his knees he will crawl backwards a few inches. Zachary gets his lab now drawn two days a week instead of three which is nice, His labs are looking pretty good, his CSA level is a little high but they said not to worry, they just decreased one of his medications. Check out the photo gallery, Zacharys 1st birthday pictures, and more hospital pictures have been added. Have a great day, and good bless you all!!!!!!

Today Zachary had a routine check-up with his kidney specialist. Everything looks alright and she said will see you next month. Also today, Kiley had a kidney ultrasound performed there. She is battling her 2nd bladder infection. The doctor said everything looked ok on the ultrasound. When we found out about Zachary’s kidney failure they ran all the same tests on her but the ultrasound. Hopefully, the medication she is on works quick! She has been one cranked up little girl lately.

Wade