Surgery is scheduled!!

Tyler has both of his parents for a few days again. He had a great time playing with Grandma Shell and Grandpa Steve this week. It's amazing how fast he's learning things. While in Ferron he learned to say, "P-U Bell". I missed him, but I'm glad that he could spend some time with Ryan and have a break from things up here for a bit. Ryan enjoyed having him there as well. He's been alone for a while now.
There was a break-through for Drew this week. Drew's surgery is scheduled for April 10 at approximately 10 am!

Now for the whole story: After Drew's GJ tube (that fed him into his small intestine or jujenum) was pulled out they put a tube in to feed him into his stomach again, since his esophagus had healed. He had been doing very well with it and we were ready to move into progress toward normal feeding. He had been on a pump that fed him continuously 24 hours a day.
Monday, March 30, while I was there he started coughing more than usual for him. I mentioned it to a few people, but it was blamed on the tube in his mouth likely being in a strange spot. By Monday night the fluid coming out of that tube was a milky color. The nurse saved it and we showed it to everyone who came by on Tuesday, but it was again put off. By Wednesday his cough was bad enough I knew something more needed to be done. Drew didn't let us know that he had fluid in his chest last time until his entire right lung had collapsed. I count it as a great blessing that the NNP on Wednesday was Sarah, who has been encouraging me since February to stand up and speak for Drew when I notice things are different. I hadn't done so the week before until he had absolute signs of an infection around his tube, although I had felt something was off for several days prior. So when I said to Sarah that I felt the cough was more, she ordered a chest X-ray. Sure enough fluid in his upper right lung. So Thurs we had another upper GI study (where they put dye into his stomach and watch to see where it goes). The doctors were all still doubtful, but I was nearly sure there was a connection between his stomach and airway. I was right. The fluid filled his stomach, went up the esophagus, and then a tiny stream branched off into his airway. So although they had removed one connection in the first surgery, there was a second hiding that was unexpected and undetected all this time.

So what now? The surgeon, who had come to watch the upper GI, was baffled and said he would think on it and let me know what plan he recommended.
When he returned he had decided that we'll watch Drew's lung this week and he'll get IV nutrition (which he's been getting since Wednesday anyway), next week we'll clean out his intestine and on Friday Drew will have surgery. Hopefully the esophagus will be long enough to connect, but the intestine will be clean so that he can use part of it to bridge the gap if neccessary. Bottom line: Drew will have his repair surgery Friday.

I've been a bit mixed on my feelings about it. While I am so looking forward to be able to take Drew home, I hope that his esophagus will have grown enough to have a 'primary repair' (no intestine needed to replace). The digestive system has wave-like motions, called peristalsys, that help to move the food through. So if they have to use something other than just his esophagus the movement will be different, or not adequate and make it difficult for Drew to eat.

For now I'm going to just think positive and pray that he will finish growing what he need to before Friday morning. With that in mind, I am so excited for him to be able to eat by mouth and go home!! So it's probably a blessing in disguise for us.

This time in my life has caused me to really review my beliefs, and while I don't think I could ever forget my testimony of the gospel, it's been difficult to watch my little boys struggle through this and not ask "WHY?". I decided this week, after 11 long weeks, that the Lord sent Drew to me because he knew I could handle it. And although I'll maybe never know why he's had to suffer through this and why Tyler had to have his world shaken, why Ryan and I have had to be separated, we'll all be stronger for having gone through it. We have been greatly blessed through-out, and I probably haven't even recognized most of the blessings.

I know of my Father in Heaven, who loves us so greatly. I know my Savior, my brother, suffered ALL things and atoned for our sins, that we might be able to gain Salvation. I am sure He hears our prayers and is perfectly aware of our struggles and hopes and joys and answers accordingly for our good. I am so grateful for your prayers for our family and especially for Drew. He is amazing and has been able to tollerate so much, and I'm sure he's been strengthed through our prayers.