Sorry folks, I didn’t get this updated last night.

Zachary had a not so good day. They did give him a blood transfusion as his hemoglobin was very low. Within a few hours he was pretty perky again and kicking away. However, somehow he managed to kick one of his tubes and pull the stint loose. It only came out a couple of centimeters, but that was enough to get the urine flowing into the foley and not all into the stint. There is only a 1-2% chance of this happening, but Zach managed to be unlucky enough to fall in that category! They have now taped the tube to his leg and taped his pj bottoms, etc.

This morning (Sat) he has come down with a rash and fever, haven’t heard what is causing that and the stint has come out a couple more centimeters. They are running a bunch of test this am to see what there next steps will be.

They’re lives seem to continue on this up – down cycle that it has been going on for the last year. Talk about stress, they have really had it and we are so proud of them for their endurance. Without Stacey there 24/7 to be his advocate, he would not be doing as well as he is.

When I hear results of what is happening, I will update.

Thanks again for the the caring and prayers.

Gma E

Good News! Zachary is out of ICU and into his old room. He is doing much better and his system is functioning again like it is supposed to! He was able to go for his wagon ride which he seems to enjoy. The doctor says everything looks good and the stint will still be staying in for two weeks and then the catheter should come out 3-4 days after that.

The results came back early on the bioposy of the kidney, and he is not rejecting it. More good news!

Mom and Dad are really drained today, so I don’t have a whole lot of details for tonight. Wade did get somemore good pictures today, but I haven’t learned how to do that and we sent him to bed early. The famous smile hasn’t totally returned, but he was working towards it today.

Please keep the prayers coming as they sure are working, he is a tough little cookie, but only with your help.

Gma E

We are back to day 1 of recovery again.

Wednesday was a terrible day for Zach, he was very uncomfortable and his poor little tummy was even getting hard. After Stacey complained all day about him not feeling good, they did an x-ray, then a catscan and finally an ultra-sound. At around 8pm they took him down to surgery and opened him up top to bottom again. It seems his urether had pulled away from his blatter and all his urine was going into his stomach. They suctioned him out and put in a new stint between the urether and blatter. This will be in for a couple of weeks. They took a bioposy of the kidney and urether, those results won’t be back for a couple of days.

They said that the tissue of a infant is very soft and that could be the cause of the breaking loose. Also, they are connecting Wade’s larger vessels into the tiny ones of Zach’s.

At 2:am today (Thur 9th) he was in ICU and doing good.

I will try to update this later this am.

Gma E

The site has finally been updated with some new hospital photos, thanks for your patience and please check them out.

Today Zach is having a pretty good day. His urine output is very good. Although, today marks day four of having diarrhea. He is not tolerating his feeds and they are discussing feeds via TPN. This would mean using his Hickman(central line) located in his chest to deliver the nutrients he needs. They did the stint study this morning to determine if it can be removed from his bladder and results were positive. They have scheduled removal of the stint tomorrow morning.

His temps have been staying steady and he is still tolerating the anti-rejection drug.

The wagon ride has become part of his daily ritual and he really enjoys the trips. His ride took him over to the play area where his sister Kiley was coloring pictures for his room!

Stacey and Wade attended those classes today and learned about caring for his central line (for convenient blood draws) and the dialysis catheter (this is just for precautionary purposes if he would need to be dialyzed) which are in his upper left chest area.

Hopefully I can report tomorrow that those big famous smiles are back!

Gma E & Wade

Zachary didn’t start the day with the famous smile, if I was poked and prodded as much as him, I’d never smile! As of this morning, he is still handling the new anti-rejection drug well. His immune system is still low, but he was able to go for a another wagon ride to check out the other nurses on his floor. He is the one who gets checked out – he is a real babe magnet!

After Wade and Stacey attended a couple of classes on post hospital care and drugs, Wade stayed with Zachary and Stacey got to see the outside world again. The smell and feel of our COLD fresh air was good for her. She was able to spend several hours with Kiley and that was therapeutic for both of them. They stopped at home and Kiley really enjoyed playing with her friends Gracie, William and Matthew.

Tomorrow Zachary’s day starts with a stint study. In my laymans terms: a dye is injected to see if the urether is still open going to the kidney. His uring output is not great, but not completely abnormal. Also, Wade and Stacey have a couple more classes to attend.

Gma E