Today was tough :( We finally met with surgery today and hearing that Haydens situation is extremely unique is beyond heartbreaking. Our options are limited and neither were great options. To keep it 100% honest our surgeon told us J-tubes suck and can cause more problems, but what do you do when there are no other options? He explained both J-tube surgeries to me and we went over pros and cons of both types of surgeries (I will post a link tomorrow to the two different types of J-tube surgeries that Im talking about.) He said that he usually fights against J-tubes, but Haydens dis-motility is pretty severe. For those who dont know Hayden has chronic intestinal neuropathy, intestinal pseudo-obstruction, bacterial overgrowth of the small bowel, constipation, overall generalized dis-motility, GERD, and aspiration....another big factor is that he has delayed gastric emptying. Our number one problem that he has been having is that we cant get the GJ-tube that he has now to stay in place...as of today it has come back again (coiled with in the stomach or a ligament. In return that causes him pain, weight loss and also allows more bile to back flow into the stomach and more than his normal daily out put causing him to retch even with draining his G port (stomach.) He usually drains anywhere from 50mls to 200mls over night, but I knew this morning it had came back when he drained 400mls from night to morning :( In the last month and half the tube has come back 4 times and he has been intubated twice to have it placed by endoscopy. Its way to risky to keep intubating him back to back and I will NOT allow it to continue specially since its not changing anything. Haydens surgeon agreed that it was pointless to keep going that route and as a team I decided that I wanted to try a straight J-tube before we do anything drastic that would change Haydens anatomy. The cons of this procedure are that adhesions can occur and he could also develop mechanical obstructions and the other not so great thing is that it may not work at all due to the severity of his dis-motility. For this surgery they will cut him open and make an incision 3-4 inches long and find a piece of bowel cut a hole in it and then stich it to the outside (Im sure Im not saying it completely right so I will post a link in the morning.) He will be admitted October 13th and will have the surgery October 14th. They told us he will be inpatient up to 5-6 days depending on how he does after the surgery and then restarting the whole feeding process all over again. I hope this all made some sense......Im over emotional tonight and sleep deprived! I promise a better update with links so that you all can understand what Im talking about. In the mean time I went ahead an launched the booster for Haydens shirts I didnt have a chance to play with shirt/picture I left it the same. Im only doing it for 8-9 days only because I want everyone to get the shirts before Hayden has surgery October 14th. I want to get as many people wearing his beautiful face to RAISE awareness and to show SUPPORT for my brave little monkey
Posted on: Thu, 25 Sep 2014 04:18:58 +0000
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