Re: NG-tube issue

[Guest guest]

When I give her the meds she has no idea of how to swallow them. Most of the time she has coughed and sputtered and gasped for air. But it is really getting scary to give it to her lately. The last few days she has been turning blue after taking the meds and is in obvious distress for quite a while after taking them.

Darla, This sounds so familiar it's scary. We never knew Chelsea had aspiration issues until she had a swallow study done at 2 1/2yrs. The study showed she was microaspirating all textures to pretty significant degree (the radiologist freaked out and demanded we stop the test). Yet, she was NOT getting ill at all from the aspiration. 2 mos. later, she was dx'd with epilepsy and had to start taking phenobarb. With the very 1st dose, her feeding issues became worse, and we began seeing just what you described above with most of her feedings. I continued to persevere, determined to keep her eating orally because she loved it so. Unfortunatly, 3 mos. later, she woke up with severe aspiration pneum. (that was when I had the SWAT team experience in the ER). She spent over a week on a vent and went home with an ng. Her ped encouraged us right from the beginning to make a decision regarding getting the tube or not. She did not want the ng in any longer than 8wks or so, as she was concerned about damage to her cardiac sphincter and esophogus from reflux. About 5 wks or so after it was put in, 3wks after recovering from pneum, her ped removed the ng. Prior to that, she had been showing promise of returning to oral feeds, but within 24hrs, I called her ped back and said we had to replace it and start the process for getting a gtube. In that 24hrs, Chelsea was hardly able to eat a bite and literally wilted before our eyes, I could not get any meds down her, including her phenobarb, which had been switched from pill to liquid with the ng placement. I was scared out of my mind and didn't know what to do. Her ng was replaced within a week, but she was already coming down with asp. pneu. again. She ended up in the hosp. on a vent a few days later. This time, I begged for a gtube. Her ped was wonderful and did all the coordinating with the GI drs and surgeons to have it done as soon as she was well enough. At that time, we were told the gtube was a bandaid for her problem, she would continue to aspirate and her lungs would deteriorate. BOY! were those drs wrong! Ever since the gtube, she has done much better and has only been vented for surgeries. She still does get asp. pneu, but mostly from a viral infection. And she is able to recover at home.

I know this is a hard decision for you. Having 2 mito kids, both with gtubes does seem overwhelming. But given all the problems Porrah is having now, it might be a good idea to have an ng placed to see how she does on it. It may worsen her reflux, something to discuss with her ped. I read the surgeon's report from CHelsea's gtube surgery and it stated there were mild adhesions in her esophogus, indicative of reflux damage. Chelsea had an upper GI with the 2nd ng placement, which showed no reflux, and she never had any noticable problems. I would reccomend feeding her upright and keeping her that way for 20 to 30 mins after a feed, this should reduce the reflux some. Sorry for the long note, I wish I could be of more help, but this is something that you will have to decide with your family and drs. I remember how hard it was on us 4 yrs ago, but in the end, it was the best thing we could've ever done for her. I will be thinking of you guys! Hang in there!

e, Chelsea's mom(nonspecific mito)