A new beginning

So, W had his surgery Monday to place his PEG tube. The surgery itself went well, it took less than 30 minutes, including doing biopsies with the scope. The recovery itself was a different story. I remember in nursing school being told that kids coming out of anesthesia can be pretty wild. He did pretty well last time and was just in a zone. This time it was a different story. He woke up and was thrashing and I could barely hold him. The nurses kept saying " you are going to drop him!" All I could think was "Yeah, I know." One nurse finally took him and showed me how to hold him in a safer way, closer to my chest and tummy to tummy, after I was told to not let him lie on his tummy. When we saw the surgeon for a consult, I asked if he was going to have a lot of pain, I was told "no, nothing a little Tylenol won't take care of". That was a total understatement. He was pretty painful and when I told the nurses what the surgeon told me, they smiled and said that the kids are usually painful. He got Demerol in the recovery room and continued to get Morphine through the night. He would just lay in the bed and either moan/cry or sleep. When we came home on Tuesday (with some Tylenol with Codeine for the little dude)he continued to lie around.

He finally started to pep up on Wednesday afternoon. Thursday afternoon he played with friends and did great, he was hurting when we got home and was guarding his tummy. He has had some greenish, snot consistency discharge around the tube insertion site along with some pink clear discharge, all which the nurse has said is normal as long as there is no odor to it or doesn't have a fever greater than 100.5 degrees. He is starting to drink well and is wanting to eat, so these are all good signs.

He still doesn't tolerate bolus feedings very well, so I always just hope he drinks his 16 ounces a day, so I don't have to bolus since he tends to throw them up (which to me is counterproductive).

He keeps pointing to his nose and saying tube. When we tell him it is gone and it is in his tummy now, he smiles. This in itself makes the decision for him to have surgery worth it, he almost acts like there is a weight taken off his shoulders. We are also teaching him that his PEG tube is his "button" and help him show friends so he doesn't feel like it is a bad thing. He is still sore and doesn't like me cleaning it, but it gets better every time.

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.