Friday, April 16, 2010


Is it really happening? I keep asking myself, pinching myself. KAIDENCE is EATING and taking all of her MEDS by MOUTH!!!!!

Since July 2007 when Kaidence got the virus that attacked her heart and put her into heart failure see has been tube fed. During the many months she spent in the hospital she was in a medical coma and therefore tube fed into her intestines to prevent throwing up and aspirating while intubated. When she was transplanted, we found that she had to relearn how to swallow and everything else because she had been intubated so long. We took her home with suction and suctioned her every couple of hours. We also learned that she had damage done from the lengthy intubation period and that her vocal chord had become paralyzed, therefore she could not cough and protect her airway.

Months after transplant we pulled kaidence's tube from the intestines into the stomach and she started getting food in her tummy for the first time in a VERY long time. At that point I thought the whole feeding thing would be a breeze. Who doesn't love to eat????? I was so wrong. We knew we were once again into for the long haul and so that same summer she got her g-tube - it was the greatest thing ever!!!! Kaidence was throwing up 5-6 times a day around the clock. Oh, the smell of thrown up vanilla pediasure! Her stomach was not stretched. Needless to say many of you moms know that struggle from this point on. The laying in bed at night and thinking of how you can run feeds at some magical rate to keep your kiddo from puking. How you can quickly put weight on your kiddo before the next cardiology appointment.

After countless hours of feeding therapy, wasted baby food, doing the Heimlich, chipmunk cheeks full of food that she would spit everywhere 20 minutes later and many tears of has happened. It started when I would tell her that if she chose to not eat her food that I would have to feed her through her g-tube. That was all it took, she would say "no g-tube" and finish every time. I have waited on posting because I am afraid I will jinx us. Suddenly Kaidence is an eating machine. She is constantly hungry for anything and everything. I find myself just starring at her. I cannot believe my eyes. For example last night I gave her all the left over mashed potato's and gravy knowing that she would never eat it all, but wanting to get rid of the left overs. She ate every bit of it. Then later that night we went to the Artic Circle for ice cream. I almost got her a kiddie cone, but then knew that she would want the same as her brothers. It was a big ice cream cone so I figured I would have some of hers. Not so, she ate everything....including the cone. Then she proceeded to tell me that she wanted a cheeseburger. What?????? So I order her a cheeseburger and had her split it with camden. She ate every last bit of it.

With her meds we started by flavoring her blood pressure medication and she loved it. So we then went to the others. Now she is taking all of her medications by mouth as well. Is it time to say goodbye to the g-tube? Possibly, but I m too afraid. It comes in much to handy when she gets sick. I plan on keeping it for awhile just to be safe. Also I want her to have it for a vocal chord surgery that will hopefully be coming up in the next couple of months. I am sure that will be pretty rough on her and we will need a way to get her meds and food during recovery. I figure, if you have it you may as well use it.

As of right now I have a garage full of Nutren Jr Vanilla. It does not have the added fiber. I may also have some cans of Duocal. I am not getting rid of all of it, just in case. However, as the expiration dates get closer I will be getting rid of it. I have some that I do need to get rid of, if you are interested in it, you may have it. Just let me know!