Wednesday, July 21, 2010

The Verdict

Today we saw W's GI doctor and received the verdict on whether or not he needs to have the G-tube placed as scheduled on August 2nd. But first, an update on daily life. The last couple of days he has been eating!! I mean really eating, more than just a few bites a meal. I don't think it made a difference however, his weight today was down from his weight at the pediatrician's last week. Some of this can be attributed to different scales, but now he is no longer on the charts. Who knew 5 ounces could make such a difference :(.
So we are a go for the G-tube placement on August 2nd. His GI doctor really thinks he will have to have the feedings for a few months yet since he isn't (generally) really eating much, if at all. We have mixed emotions regarding having the G-tube placed, but try to remind ourselves to trust in God and that He has placed Wyatt in the right hands and helped the doctors to make the decisions for Wyatt's best interest.
We also have to try to get 35 ounces of fluid down him a day. Sixteen ounces will be easy because that is what he gets in his tube every night. The rest will be a challenge. I do know we will be doing a lot more gavaging during the day, but I guess that is just how it is. I also spent some time on the phone trying to explain to my 80 year old mother-in-law about the G-tube and to try to calm some of her fears and misconceptions from what other people have told her. I think she understands, I am going to make copies of some of the booklets to show her pictures, I think this will help her. Feeding therapy tomorrow.

Thursday, July 15, 2010

Finally on the Growth chart

Yesterday, W had swim lessons. I don't get it, at home, he is a fish and does most everything without crying, at swim lessons, we can't even get him to play on the step without crying. We are doing swimming to help strengthen his upper body. He will hold his breath, which I think is good for a 20 month old. He cried hard enough, he threw up his feeding tube (which may have been partially my fault, since the tape needed reinforcing and I didn't have any with me).
Afterwards, he had an appointment with his pediatrician. He is starting to cry every time a doctor examines him. I am sure it is just because he is overwhelmed with seeing physicians, he doesn't mind if they are in the room, just when they are touching him. All are very gentle, I think he is just done! The best news, he is finally back on the growth chart, this is the first time since he fell off over a year ago!!!!!!!!! I know it is because of the calories he gets at night in his feeding tube. He is only at the 1% , but he is on it!! The pediatrician also suggested we discuss with our OT if physical therapy is needed. I will have my husband do this on Saturday as I will not be here for therapy on Saturday.
He had feeding therapy today. He took a couple of licks of frozen yogurt, but that was it. He was not impressed with it on his hands or with the muffin either. He generally just plays and giggles and doesn't eat. But, at least it is not stressful for him, which eating generally is. We did not replace his tube last night because we didn't get home until late from picking my husband up from the airport. He didn't eat more today, but he did drink well. He drank 12 ounces of his milk by noon, it usually takes him until 4 or 5pm to drink 8 ounces. It probably helped it was 117 degrees here today! It was nice for him to have a break from his tube, but we will replace it tonight and back to the same old. I dread putting his tube in.
Today, we had feeding therapy

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.