My son has a new look.... he is sporting a feeding tube now. I think is most cases this isn't the best sign possible, but for us we have welcomed it. I didn't realize until last night/early this am (whichever way you want to look at it) that his lack of eating and drinking had taken such a toll on me. The decision was made from the PCMC feeding clinic yesterday to finally take some action with his lack of intake and his constipation problem. So we went to the ER last night and had a NG tube put it, and a bowel cleanout. For the first time in a week I feel sooo much better. I know he is going to get his fluids now and we can work on the fear of drinking he has without getting to the point of hospitalization. So we'll go through the weekend and then on monday find out what else we need to do. Thank goodness for a wonderful OT with PCMC that was not comfortable with his nutrition at this point and got the ball rolling.
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Melissa, I just left a comment that vanished into thin air...something is very wrong with our computer lately. This was a huge issue with Clay and I want you to know I am happy to be a sounding board. I learned to put NG tubes in with Clay....but he would throw up everything that got in because of stressing...Him & us..finally made the decision for a more permanent option. He has had a Mickey button gastrostomy for likely 20 years...Fred & I switch it out as needed. Feeding is just connecting tubing to the port...nutrition & caloric needs are met and assured. His health increased dramatically. We did not want to do this, but now looking back it is like what took us so long? Now he eats/drinks what he wants and can physically chew/swallow/breathe without possible consequence. It is pleasurable. The pressure is lifted. So good luck, but please always feel free to vent with me......you will know and make the right decisions for your family requirements. I just don't want you to see it as negative compromise......for us, in many ways, it was freedom and assurance that Clay was getting what he needed to progress in other areas of health and related skills. Keep us posted and he is so cute!!! prayers & blessings!
That sounds like such a relief to you! I hope it all works out just wonderfully.
My son had the NG tube for 5 months before he got his G tube and yes it was wonderful. However I do not miss placeing it every time he was "finished" with it. It became a game, I'd place it he'd pull it. It was great bonding though. I know now that he trusts me to do these unpleasent things. I hope that every thing works out for the best. Does your son also attened the FUN Clinic? If so how is it working out for you?
Good for you Melissa! I truly hope the best for you. JT had and NG tube for 3 months. As long as he left it in then I loved it. Josh is so darn cute.
I am so glad that you are looking that the upside, and really mean it. It would be easy to say this is good but not feel that way.
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