G Tube surgery

Zach had surgery Thursday, he did great. The surgery took about 2 hours which was forever in my book. He woke up fine, no screaming or kicking. He got a little grumpy in recovery right before we went to his room so he got some morphine and was happy. He was pretty sleepy all day and did really well with the pain. He could have the morphine as often as needed but he only needed it maybe 5 times all day and night. Today, Friday he is on tylenol and almost back to normal. His tummy looks good, no bleeding around the button and so far he is not messing with it. The surgeon put in a mic key button, which looks like a beach ball valve.
Hopefully we get to go home tomorrow, he is tolerating his feeds good so as long as he does good all day we can leave in the morning. I know he will be happy, he doesn't like not being able to run around.

Meeting with surgeon

So this week has been very difficult. Zach has had his NG tube for aobut 7 weeks now and for the first 5 weeks did so well on it, he never tried to mess with it. As of today we have had to replace it 4 times in the past 10 days. He figured out how to take it out, so at night he pulls it out and I get to wake up to it hanging from his face and formula all over his bed.
We spoke to Dr Young a couple of times this week and he thinks it is time to go ahead with getting a G tube. He set up for us to meet with Pediatric Surgeon, Dr. Petty at Baptist on Tuesday at 11am to discuss when to schedule his surgery. We know it will be easier and better on him but it is still scary because this is major surgery. Dr Young feels that since his disorder is complex and we can't find any food yet he can eat (he failed eggs) that the tube feedings will be long term, how long term we don't yet but probably at least a year.
Thats all I know for now, hopefully we can keep the NG tube in over the weekend and get some answers and dates next week.

Foods so far my baby boy is Allergic to

After patch testing today we have expanded our list to:

Dairy-Peanuts-Tree nuts
Beef-Cucumbers-Strawberries
Turkey-Wheat-Soy
Potatoes-Cottonseed-Carrot

That's all for now..we hope
We are trialing egg..only food for 10 days and if no symptoms then we can try rice. Cross your fingers!

Still no foods

So, Zach went back to the GI doc on Friday and not much news from there. He wants him to have the hydrogen breath test, just for a definitive answer, he believes Zach's symptoms (he agrees that when Zach starts screaming after eating half an orange (on accident) that is the sucrose causing the pain) sound like CSID and his biopsies are suggestive of it. His reason for the test is so insurance will pay for the enzyme replacement "sucraid" which is apparently around $8000 a month. He would still have to be on a low sucrose diet or no sucrose depending on how he reacts with the medicine. At least this time when he has the test, his NG tube is already there so all they have to do is put the sucrose down his tube and it will be a lot easier on everyone.
Today Zach's nurse came out and did his check up a day early so she could replace his NG tube, after 5 weeks it was looking pretty nasty. All I can say is I definitely can not change it on my own if it ever came out. The tube does not bother me but it takes 3 people to hold him down and 1 person to insert it so it was quite a challange today. We also wanted to put the tube in the other nostril this time but it wouldn't go in so it has to stay in the same one. His poor skin on his face is so broke out from the tape already and who knows how long he has to have this. As much as I don't want a G tube placed sometimes I think it would be easier, at least that way, there will not be any more questions when people look at him....what happened? what's wrong with his nose? Enough for now...he has allergy testing tomorrow.

18 month checkup

Today was Zach's 18 month checkup with Dr Young. He is now 22 lbs and 31 1/2 inches long, that means he has grown 1 1/2 inches and gained an amazing 2 lbs! Dr Young is so happy with these results, as are we! He is surpassing all milestones with ease, the only exception is with talking but a lot of that could be blamed on having a tube down his throat so right now, no one is too worried with it.
Two weeks ago we had to add in tube feedings during his naptime to keep up with all the calories he is burning and it is paying off according to his weight gain today. The decision to put in a G tube is still up in the air since the tube feeding will probably be a long term thing, the NG tube he has now messes up the skin on his face and can cause some swallowing issues long term.
Tomorrow we go back for a recheck at Brenners and hopefully will get to add 1 food back into Zach's diet, he would love that...it's sad for him to walk around saying "eat eat". We have a long list of questions to ask Dr Hill and hopefully will get some good answers.
We are very happy that Zach is gaining weight finally, it's been 5 long weeks on the no food diet and having the NG tube. We know that this is going to be a long road to go and that the tube feedings will be here for a while but we are making the most of it. We are so thankful that Zach is such a happy baby and nothing has seemed to bother him too bad..he is very strong and he reminds us everyday that we can make it through anything.
We love you, Zachary Carson!

Tube feedings

So, after 5 days at Brenner Children's Hospital Zach, came home with a NG tube. That is a feeding tube from his nose down to his stomach and he can not have any more foods for now. He drinks his bottle of Elecare during the day and then at night we have to hook him up to a pump to have 10 hours of continuous feed. This has definitely been life changing for all of us. Zach misses eating food, he walks around saying "eat eat" which breaks your heart. This is all for the best, that is what keeps us going, his stomach is resting and he is doing really good.

At his first checkup with Dr Young, he was sooo excited to see how good Zach was doing and that he was starting to get some fat on his arms. He is now 22.01 pounds, the Biggest he has ever been! Hopefully he will keep on growing.

He has food patch testing on August 30 at Brenners' to determine more allergic foods. Then he goes for his 18 month checkup with Dr Young on Sept 2nd and finally back to see Dr Hill at Brenners' on Sept 3rd. We will decide about foods at that point. We will have to start seeing a dietician to help with his diet because when we do start adding foods back he can not have any foods with sugar due to his sucrase deficiency and he is allergic to almost everything.

We will catch back up in a month.