Tuesday, July 13, 2010

Not just for recipes anymore- a way to keep up on W's progress

Ok, so I have decided to use this blog as a way to chart, vent, process W's medical "stuff". I will start at the beginning. Warning, it is a long one as the story begins back in October of 2008. I will try to fill in the important stuff without too much "filler".
W was born in October of 2008 by repeat Cesarean birth at 38 weeks, 2 days. W is the second child and youngest boy. From birth, he did not nurse well or even bottle well. He had a really weak suck and swallow. He weighed 8 lbs at birth, at 2 weeks of age he weighed 7lbs 2oz (when most kids are back to birth weight). He wasn't back to birth weight until he was almost 1 month old. He also would cough a lot and act like he was spitting up, but then swallow it. Evenings were also MISERABLE with him. He was very fussy and at times inconsolable. I kept telling the pediatrician the symptoms and was told that was a normal child. At 6 weeks of age, I saw a different pediatrician in the office, due to scheduling difficulties. This new pediatrician diagnosed W with reflux, at 2 months of age, he started taking Zantac. I then chose to stay with the "new" pediatrician. The Zantac was initially like a miracle. After the first dose, I had a whole different child, no fussiness and very pleasant, for the first time, I might add. The Zantac worked for about a week. The next week, we started on Previcid, which he is still on.
We continued to have problems with weight gain. He continued to very, very slowly gain weight. He fell off the growth chart at 6 months of age. At 9 months of age, we switched to Soy based formula and were referred to a GI specialist. The GI specialist diagnosed him as Failure to Thrive (organic based). Just a note, he is NOT Failure to Thrive because I am a bad mother, it is because of his reflux and milk allergy and we will find out later he was also aspirating (swallowing fluid into his lungs).
At 15 months the decision was made for W to have an upper GI scope (to check out his stomach and tubes leading to his tummy for normal anatomy and to check for allergy cells. This was to help rule out Celiac disease (gluten allergy). All looked good and no Gluten allergy (YEAH!!). It was also decided that we would start Nastrogastric (tube in nose that goes to stomach) feedings. The doctor said that on average kids with a similar situation as W's have the tube for 3-6 months and start eating the calories they need. We have to change his tube every week or when he throws it up.
We are now close to the 6 month mark and he is gaining weight, but he is not eating well at all. A good meal for him is 5-10 bites a meal. He also has a ton of sensory issues. He sees both an OT and a feeding therapist weekly. We technically have made very little progress. He is scheduled to have a Mickey button (surgically inserted into his abdomen-easily reversed) inserted on August 2nd. We see his GI in a week and he will make the ultimate decision if he needs to have the Mickey button. I will keep you all updated.

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