I cannot tell you how crazy life has been. We have had so much going on it hurts sometimes. I wish we could get to some sort of normalcy, and I am told it will happen, but I feel like it is never coming.
So to start his third month we ended up in the ER. Fortunately it had nothing to do with his heart but of course, that stupid g tube. I seriously thought it was infected. It was so red and unfortunately still is. I have no idea what changed but it will not go back to being flesh colored. So anyways, we were sent to the ER to get IV antibiotics. Well after all the ER docs treated us like we had "done something to it" they finally called the pediatric surgeon who agreed it was NOT normal for it to look the way it did and he agreed we had not tampered with it, prescribed some antibiotics and wanted us to follow up with him or the ped surgeon at MUSC. I chose to go to MUSC and I am sooo happy I did. The visit spawned all kinds of things. First we went and saw one of our favorite OTs. She worked with Jack for a bit and we told her what had been going on with Jack's g tube, his constant screaming while eating and the white tongue he had for so long. She immediately began calling people to come and look at him. I was so happy. I really feel that everyone at MUSC is so helpful. So we started to get on the right track for some answers. Peds surgery came down and looked at the g tube. They decided to go ahead and do a g tube study just to make sure it was in the right place and not blocking the the intestine. Everything looked great so that was cleared from the eating issues. The following week we had a follow up with peds surgery. They thought, just as I had, that the white tongue could possibly be thrush. So we treated it. Unfortunately I knew after 7 days of treatment it was not thrush. So I called his pediatrician and asked if he would refer him to a GI at MUSC because in Columbia they were not helpful with entertaining my ideas to discover what the eating issue was. In addition, no matter how many times I explained it they were so dense on his heart. They aren't the only ones though. I am so shocked sometimes how people in the medical profession know so little about the heart. I know more than most!
So, MUSC GI was the best place we could have gone. When the doctor came in the room I didn't have to tell the whole story again. They had read his chart and told me what had been going on! I think my chin was on the floor. They first checked his stool for blood and sure enough! So they switched him to Neocate. I was so happy thinking "Finally THE answer." I typically try not to get too excited because most things work for a few days then quit. Well I have seen some changes. The white on his tongue is almost gone! He is recovering sooner after eating but it can still be an hour before he is up to anything, which is delaying some of his therapy. And he is not throwing up as much throwing up but it can be an hour later which makes me thing something is wrong with his intestine. Sigh.
So the prayers we need. He is having a heart cath Tuesday, November 8th. I am a little nervous about what they may find but it will tell us how his heart is doing. They will base the next surgery date from this cath. We may or may not have an overnight stay depending if they have to make any repairs. The letter they sent me also said they may have to stay "depending on the severity of the heart defect" and I would say Jack qualifies in that category. We are also working to coordinate scoping him that day while he is under the cardiac anesthesia. Please pray that his heart is ok and that we find some answers to his tummy issues!
Thank you so much for all your support! I am going to try to update more frequently. I am so happy that many of you have been asking me about the next update! Keep on me!