So when I finished my last blog, Elizabeth had gotten her trach and then had received her gtube and tummy surgeries. She was 7 months old when she had her g-tube placed. About 2 months later in September we switched over to what they call a Mic-Key button (low profile g-tube). At first I thought this was great, but then I soon learned I had a hard time venting her tummy and she was a very gassy baby. Because of the nissen to help prevent reflux she was now unable to burp. She became very uncomfortable and started to gag and retch. By her first birthday in Nov 2005 she still hadn't rolled over on her own and was now throwing up past her nissen which I was told wasn't suppose to happen.
FOr 2 months I had her in and out of doctor's office and no one could figure out why she wasn't rolling over, was so uncomfortable, and throwing up past the nissen. I was at my wits end as here I was yet again, suctioning formula out of her trach. Finally her wonderful ped said they were going to hospitalize her until they could figure it out. So in January of 2006 she was hospitalized.
Well with in one day they had their answer. A chest x-ray had been taken because they were worried she had pneumonia again. She didn't have pneimonis, but what the radiologist found was even more important. Let me first say that in the two months leading up to this stay Elizabeth had had numerous upper g.i's done as well as ph probes and swallow studies, all of which come back with nothing abnormal. Ok, so with that being said, the radiologist found that Elizabeth had a severe diaphramatic hernia and had her nissen come undone.
Soo here E is 15 months old and undergoing yet another operation. This one being hte worse as they had to completely open here stomach. SHe was cut from the buttom of her ribcage to her belly button. They fixed her hernia and redid her nissen. I was told at that time if the nissen came undone again they couldn't redo it a third time. We also chose to stay with a peg style g-tube so I could vent her as we felt the retching and gagging had led to the hernia.
Amazingly ebough my baby who wouldn't roll over before the surgery started rolling over within 2 weeks of the surgery being done and just as fast started to crawl at aroung 18 months and was walking by 19 months. It's amazing how a tummy problem could cause so much discomfort and problems. She still wouldn't put anything in her mouth besides her hands, but she has much more comfortable.
Elizabeth couldn't otlerate bolus feeds as they immediately put her in respiratory distress and she would actually pass out. The first time it happened I about freaked out. So because of that she had to be hooked up to her feeding pump the majority of the day running at a very slow rate. This didn't stop her by any means though. She was still all over the place and luckily my apartment wasn't very big so it was easy to follow her with her ivpole and pump. We also fed her all night while she was sleeping as she never rolled over because of the trach and all it's equipment. I will admit though that we fed her crib numerous times as well. You just never know when the extension set will decide to come undone! LOl!!!
Her feeding tube helped her develope a little faster, although even today she is still delayed in some areas, but you have to remember she was born 3 months too soon. I believe with out a doubt that had we not given her the g-tube, she wouldn't be here with us now. SHe would have starved herself to death and yes kids will do that. She just had a hard time with all the throwing up and the fact it made it hard for her to breath.
I was told numerous times when she was a baby,"well besides the trach she looks so healthy and chubby" or "she doens't seem to have a weight problem now." My response this has always been, "well, duh!!! I control and monitor the amount of calories she receives on a daily basis. However if it was her choice she wouldn't be here now because she refused to eat as it was too hard and frightening to her."
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