So here is the long story….

Zach has been having a long week anyway, he was getting tired, falling and was getting overheated easily we were going through it all like we normally do it was all good. Wed we get back from OT and Zach lays down for a nap before Church, Aden and I went to play. When Adam got home we went to get Zach up and ready for church to realize that Zach no longer had a button in, we couldn’t find it anywhere. It had been out for anywhere from 2 to 3 hours at that point. We called the doc and had them paged, or least we thought that they had been paged. We got everything ready to go to the ER if they told us to but in the mean time we went to church. I stayed with him and never got a phone call, we picked up dinner and all came home. I put Zach to bed and I hopped online and I im’ed someone who might know what to do, she urged me to go the ER, I then called the doc again and within 5 mins he was on the phone telling me to go immediately. So we make it to the ER roughly 6 hours after it happened. They were able to get a foley in and after waiting forever to get a Fluro done (an x-ray where they would put dye into the button and make sure that isn’t leaking and that it is in the right place) However, Thankfully it was and so we finally got to go home at 5:30am. I had to go into the GI Clinic and we were able to get a button back in YIPPEEEE it is all over!
Friday was an uneventful day and we had a great time… We went to dinner with the whole family and came home. Adam and I were looking forward to take Aden and Zach to an event at the Hope House (Where Zach goes for Respite Care) they were having a race and Aden was going to do the Tot Trot and Zach was going to get to go in his wheelchair and race with the others. So Adam , Aden and I get up and have our morning routine and when it is time to go I try to have Adam go in and get him (just something we try to do on the weekend) I walked to throw the trash away. I hear this “Zach, NOOOOOOOOOOOOOO” Of course my heart STOPS and I go running around the corner. Zach is standing in the crib, smiling and fine… Adam is on the floor with his head in his hands. I look and I noticed that his extension and the button is out. Oh man, I thought he went to bed at 9:15pm and it was 8:30am, how long had it been out? We tried to get the replacement button and emergency kit in, of course it didn’t work. We were able to call Pa-paw and Grandmama and they took Aden with them and we headed to the ER.

In the ER, they were so slow, it was driving us nuts, every sec we waiting every min we were in the ER waiting room they weren’t trying to put it back in and it was closing and he was getting NO nutrition at all. The doctor tried several different ways to get the tube back but it wasn’t able to, so they called the GI docs and they came done immediately. They both tried multiple times and different things can couldn’t get it is in either. They gave him some versed, in hopes that they can get him to let them really push and prod his belly and all that. The tried and tried and tried and nothing…. The doc as she is pulling it out tells that he was going to have to be admitted and surgery will be on Monday, Zach moves and it pops into his stomach. This was an hour of trying to get it back in. Adam and I just looked at each other and said “Thank you God”. They were not able to get the PEG in or a button in but they did get the foley and got one big enough that he could feed through so we were able to go home.

On the way home we stopped at ate, none of us had eaten that day and we were all starving. We stopped at KFC and I got Zach a honey BBQ chicken snacker. The boy ate the whole thing minus two bites of chicken. He totally enjoyed it and it was a gift from God to see him eat. Of course he hasn’t eaten since!

With the temp foley it has some issues… it doesn’t have a med port so it is really hard to give him his meds and because of how it is put in, the pump went off Saturday night every hour, I got very very little sleep, not to mention that I am nervous and scared that it is going to happen again, his tummy is so tender and red.

So I am praying this week is better, easier and calmer... Which while I was writing this, Zach woke up to the temp foley was out. Man, already.... we put the Emergency PEG in and taped it down. I hate to be the one to take off all the tape but still, no ER visit!