We're Home

CJ did so great today I am so so proud of him although we both did allot of crying. I thought it was horrible. James said that it wasn't as bad as I think it was but I beg to differ. While we were waiting I asked CJ what kind of day he was having and he replied a bad day since he wanted to go home. It was really hard leaving him with the nurses this time (the worst). When the nurse showed up to get him he took one look at her and said oh no. I felt so sorry for him. While he was in surgery they put a very large tube with all the probes down his nose through the esophagus and into the stomach. This of course was to monitor his esophagus while he swallowed, it also had several ports that dripped water to also measure the motility. They also removed his mickey and put another large tube with probes through the hole from his mickey into the stomach and about 3-6 inches into his small intestine (I'm not exactly sure how far it was). This would test the motility of how his stomach digests food and then empties into the sm. bowel and also the motility of the small bowl. After we got back to our room from the O.R. we met with the RN who would be staying with us the whole time and the Doc who would be in and out. This was a 4 part test first they hooked each probe from his mickey(8 of them) to the monitor which would measure different waves of the stomach and sm. Bowell while fasting (part 1). I may have to have James post one day to better explain.
This test only took about 2 hours instead of the predicted 5hrs. since they saw what they needed to see early. I was really excited about that since CJ pretty much slept through all of it.
His stomach processed the food and emptied in the correct rhythmic pattern that it was supposed to as did his sm. intestine. After this fasting test we were then supposed to feed him his regular bolus feeding to see what happened when he had food in his stomach. This is when it got horrible for me because he finally started really waking up and realizing that he was hurting and that the tube in his nose hurt really bad. He was crying saying that he wanted to go home and then he would point to his nose and just scream owe over and over. It was horrible. The doc felt bad for him at least and let us do the testing out of order. So we finally got CJ to calm down and went to (part 3 & 4) of the tests which was testing the motility of the esophagus. First he had to dry swallow a few times with the port going down his throat dripping water which he hated and started screaming again so they had to turn the water off. Then we had to get him calmed down again to get him to wet swallow by taking a drink. He had to do this 12 times. He did such a wonderful job and took good big swallows we were so proud of him and thought that we were finally done and could take the tube out. Then the doc said that the tube was not placed right and needed to be pushed down in order to measure the pressures by his fundo. This was horrifying not only to CJ but to me. It must have hurt real bad because he was screaming so bad. I had never heard him scream like that and I started crying and James told me I needed to step out and calm down. I realize that my getting upset wasn't helping the situation but I was not leaving him for nothing. They finally got good enough results and was able to pull the tube out. What a relief for us both. They then finished the other test which was to watch his stomach pressures while he was eating. After all this I am not sure we are any farther ahead than we were. Although we now know that the retching is not because of his stomach or intestine we still don't know what is causing it. The swallow part of the study did show that he was having some kind of problem swallowing because he always double swallowed but what is causing the double swallowing could be a number of things. The doc wanted to study this a little more before he gave us final results. Hopefully next week some time. I thought it interesting though that he mentioned it could all be a result of his FUNDO which has been a concern of mine all along. I am glad that we did the tests in the sense that we were able to delete some possibilities as to what might be going on. On the other hand I am so sorry for him to have to go through all of that and still not have any answers as to why he retches so bad. Maybe there will never be an answer, and this I suppose is hard for me to except when I have to watch him retching and gasping for breath and not be able to do anything to help him. The doc mentioned doing other testing to find out why he double swallows and what is going on with that but I can't do it any more. I'm not giving up on him and I would never do that but at the same time I can't put him through more pain that will not deliver any answers. I think we will re-evaluate the situation in a few years when he gets older maybe the only answer is more time. As the saying goes only time will tell. As for now I love you so much CJ. I will always be here for you and will always do what I have to do to help you move forward in life. You were so brave today and did such a wonderful job. Mommy and Daddy are so proud of you. On another note he is already back to his sassy self. He asked to watch a movie that I don't care for, so when I told him this he replied with you don't have to watch it. I love my children so much they amaze me in so many ways every day. Well hopefully this makes at least some kind of sense. I have been up since 4:30 this morning so I feel as though I may have rambled since my thoughts seem scattered, so I am going to head out to pick Nikki up from dance and then going to bed.