Dear Family and Friends:
I have not blogged the last two nights simply due to pure exhaustion! Tuesday marked one week after surgery and they wanted to send us home that day but Emory started refluxing, throwing up, wretching, etc. in the hospital. When the surgeon did rounds, he said for us to stay one more day and let Emory be observed. He said that from a cardiac stadpoint, Emory was doing great and healing good. But, depending on how many times Emory threw up in 24 hours would determine if we needed to change from the NG Tube the the G Tube and to have the "Fundo" surgery. So, Claude sent me home to get some rest and stayed up there with Emory. When the surgeon did rounds on Wednesday, he did not think Emory's throwing up episodes were significant enough to warrant another surgery so soon. He discharged us to go home.
We got home Wednesday afternoon and the only thing Emory still needs 24/7 is his NG tube which feeds him his formula. We do have several oxygen tanks and a pulsox machine in case we need it. It took us a while to get all of the equipment and "stuff" from the hospital settled, but we got it all under control, ate a delicious home cooked meal that Gremmy cooked for us, got the older two boys bathed and in their rooms with a movie, and I was off to Wal Mart for a few things. Mind you, I have not been to Wal Mart in weeks. For those of you who know me well, you know that is rare! While in Wal Mart, Claude called and said that Emory had pulled out his tube. So, I quickly finished up the shopping, got home, and we started the process of reinserting the tube.
Claude tried several times and we almost went back to the NICU where Emory stayed just after birth, but Claude finally got it right. About an hour later though, Emory threw up a great deal. At this point, it was about 11:30 and I was concerned that maybe we didn't get the tube in the correct spot. So, off we go to the ER to have it checked......we went to the hospital close to our house rather than the children's hospital downtown. Once we got there, we were taken to the back immediately because of Emory's condition. We will always be taken to the back quickly because of his heart condition and his DiGeorge. But, once we got there, the pediatric ER was closed and that is when they mix in all the children with adults. They said it was a 4 hour wait and for a patient with DiGeorge to sit in an ER waiting room is not wise. So, we walked up to the NICU and the nurses there checked it. Plus, it was great to see some of the nurses that took care of him. They just went on and on about how big he had gotten. I guess for me to be with him 24/7 and to see all of his problems, it's hard to see his growth. Then we got home around 1:00, got Emory settled and closed my eyes at 3:00, and then was up and down till 9:00. Hopefully, tonight will be better.
During one of those up and down times, Emory pulled his NG Tube out AGAIN! This little guy is fiesty! Claude got the tube put back in and we started our process to leave for a follow up with the GI doctor. Emmitt and Eli had fun at Mrs. Misty's house, the three of us went the dr., and Gremmy left to pick up Papa in TN only to continue on to VA for Papa to preach at a meeting. Our visit with the GI doctor was successful for now. He changed one of Emory's medicines and gave us some instructions on feedings and said to follow up in 3 weeks. Basically, right now Emory is being fed through the NG Tube 24/7. If he continues to pull his tube out or if his reflux and throwing up gets excessive, then we will further consider the insertion of the G Tube and the "Fundo" surgery. Until then, we are just settling in here at home where it is cool. We can certainly go out with his bag of formula, but it hasn't yet become "second nature". Tonight when I finised bathing him and putting his pajamas on him, I put socks on his hands so that maybe he wouldn't pull the tube out.
In essence, I've gone from following a strict feeding schedule to a strict medicine schedule. Emory gets 8 medicines a day, round the clock. Thankfully though, he doesn't have to have any doses given between the hours of midnight till 6:00 a.m.
While we were at the doctors office today, we saw a few children who were much worse off than Emory. And, although our stress level is high and we are exhausted, I was so thankful then that Emory had the issues that he has. After seeing those other children, it made our life look like a breeze!
Well, the house is quiet....all the boys are sleeping.....and this momma is gonna call it a day! The older boys start preschool next week and I don't think I've looked more forward to something in a long time. I'm ready to get into somewhat of a routine and that only seems to happen when school is in session. Have a great night everyone! Until next time.......