Never a dull moment around here! Today, Stacey was able to get Zachary in for the RSV shot, he was supposed to get yesterday. As Stacey is about to leave for the clinic, his feeding pump began beeping. It says “no flow”, we tried water and sprite no luck. Stacey and the Dr. worked on it for over an hour with no results. This is his J-tube(feed tube bypasses stomach and goes straight into intestines). The one we use for continuous feeds and to give him his medications. They return home and we prepare ourselves for another day down at the U of M. Unfortunately, they would not be able to squeeze him in today. Instead of going down and spending the night we opted for option number two. We had some clog Zapper delivered to the house, and a nurse came out to set up an IV. The IV is to keep him hydrated until tomorrow. Anyhow, the clog Zapper did the trick! The IV will be removed tomorrow. I am really looking forward to a less eventful day. ex.) Sit around in our pj’s eating bon bons and watching movies all day! Yea!

Wade

Change of plans today! No RSV shot today. Nope, back down to the U of M. The urine output from Zachary’s PNT(the temporary tube coming out his side) wasn’t much. Also, the tube we would like to shove up a few Dr’s @%*’s. Ok sorry, venting, we are to say a little stressed and burned out with doctors! Anyhow, this tube drains into a little bag and we measure it. We noticed his urine out was only 26cc overnight (not as much as usual). Also, the dressing (bandages around were the tube enters his side) were soaked.(not supposed to be going on) This was the reason we were there on Dec. 23 for surgery #4. All along we were under the impression that the tube had been replaced. Wrong! So this afternoon, indeed it was replaced. Stacey can confirm, she got to stay in the room. Once the wire was run down to remove the tube, it practically shot out. Urine came out his side and the Dr. jumped backed and said, “wow I guess that was a bad tube”. Bear in mind this was not the same Dr. from Dec. 23 that ran a wire down, thought he straightened the kink, and sent us home.



We are all home again, Zachary was laughing and smiling all the way to bed. Just another day, nothing does phase him!



Wade

Zachary had a great day today! We also enjoyed our Christmas turkey dinner this evening.

Kiley, Stacey and I are still a little under the weather. I definantly feel better. Tomorrow Zachary has Dr appt. And receives his R.S.V shot. Respiratory syncytial virus (RSV) affects nearly all babies by the age of two. In adults and children, RSV usually causes mild cold-like symptoms. But in premature babies, it can develop into a serious respiratory illness. He gets a shot once a month for 5 months during RSV season. $3000 a pop, maybe that’s why insurance was giving us a hard time. I here my nephews are bummed I can’t snowboard yet, Maybe a couple more weeks!

Wade

Zachary is doing great, but he is the only one in the household that is. Yesterday he played with some of his new toys and was just having a ball, laughing and giggling.

The Christmas Day they were looking forward to didn’t turn out like they had planned. Wade came down with the flu last night, Kiley is recovering from it and Stacey has a nasty cold and feels drained. Is it any suprise that they get sick after the stress they have been under?

Hopefully tomorrow they will be feeling better and can enjoy their turkey dinner.

Our prayers go out to all of them for speedy recoveries.

Gma E

Today, Zachary’s surgery went great! They listened to Stacey and agreed to try the procedure without of putting him under. He was sedated and they used local anesthetic to replace his temporary tube to drain his urine. The Dr’s said he was awake during the procedure. Although strapped down was laughing and giggling. It really was a short procedure since it was just changing out the existing tube which had a kink in it. We had packed for overnight because of his history with anesthesia. We were very happy to be home by just afternoon!



Kiley looked as if she had a spat of the flu last night, but is feeling better today.



We had a big turkey donated to us, so tomorrow I think we will just hangout and enjoy all being home.



Wade