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.

In the Hospital

Zach was supposed to have his hydrogen breath test on Friday morning, we got to the hospital at 7 am and he was doing fine. He was supposed to drink a  2 oz bottle of sugar water and then get breath readings every 15 minutes for 3 hours. However, he would not drink the bottle and the nurses tried placing a NG tube 5 times with no sucess so he was sent home. They did notice however since Tuesday when he saw his doctor here, he had lost a pound. He hasn't been eating hardly anything including his bottles of Elecare. So around lunch time he was admitted to Brenner Children's Hospital for observation and testing.
When we got here, he was only 20.8 lbs and on Tuesday he was 22 lbs. He had bloodwork done and we are waiting on those results. They are also counting every calorie he takes in to keep up with him losing weight. Today he was only 20.4 lbs so we are waiting on the on call GI doc to come by and talk to us and develop a plan. I know on Monday he will have his hydrogen breath test by the GI team. He might end up with a G tube for feeding but we are waiting to hear.

Results

The results finally came back from the pancreatic testing and enzymes when Zach had his biopsy. His pancreas is fine but his enzyme testing came back with him being low in sucrase and maltase, which are the two enzymes that break down sugars and starches in the digestive system. So the doctor recommended having a hydrogen breath test done, which will take place on Friday July 23rd at Brenner's. If that comes back positive it will mean Zach has another very rare disorder called CSID or congenital sucrase-isomaltase defiancy. Only 1200 people are accounted for having this disorder. It means he can not process any sugar or starches so his diet will be even more strict.
To top it off he has only gained 1 pound in the past 9 months, which is good that he finally put on that 1 pound of weight but it's only from him drinking his elecare formula and it only happened over the past 2 months. I think he is getting closer to having to have a feeding tube placed because he is not getting enough nutrients to grow. For now, that's all we know, wait on 1 more test and go from there.

Problems keep going

So the first choice of treatment was to start on pulmacort respules mixed with splenda packets ( I know, wierd!). He was on this new treatment for a about a week when he started having more pain, he was waking up screaming all night and not eating well. The doctor from Duke let us know that his secretions from his biopsies came back with a lactose deffiancy so we took out all lactose hoping to ease his pain.
In May we went to see Dr Hill, the head of pediatric gi at Brenner Children's hospital. He seemed to think that Zach was having some malabsorbtin issues with his pancreas so we did some more stool cultures to check for fat and lactaid in his stool. He also checked his thyroid level just to eliminate any hyperthyroid problems. Both tests came back normal and yet Zach was no better. He was still having lots of pain, diarrhea and a new symptom, vomiting almost everday. The doctors put him on prevacid for heartburn and mylanta four times a day.
When he went for his 15 month checkup at Dr. Young we found out he has fallen below the 3rd percentile for his age and height. We also had him allergy tested since EE can be caused by various food allergies. His allergy tests came back with him being allergic to beef, dairy, carrots, strawberries, cucumbers, peanuts, tree nuts, and cottonseed.
At his checkup with Dr Hill on June 7 he decided to redo an endoscopy and biopsies as well as pancreatic testing and secretion testing. He had his procedure on June 15 at Brenner's, I was a lot more prepared this time and was ok with him going under anesethia.
Now, we just wait and see what his biopsies show and what is going on with his pancreas.

The problems begin

In February 2010, he started having diarrhea, 8-12 diapers a day. He went a couple of days with blood in his diapers so Dr. Young did stool cultures to check for blood, parasites, bacteria and viruses. All came back negitive except blood. He also put us on soy milk and bile salts, both did nothing and by now Zach was starting to have some stomach pains.
At his 12 month checkup, his weight hadn't changed since his 9 month appt which was surprising. So he was sent to a Ped GI docter here in Greensboro. Our first visit was not helpful nor did I like the doctor. He put Zach on an anti protazol medicine for 3 days. The next day Zach spiked a fever of 103 which went to 105 the next day and he became dehydarated so he was admitted to the hospital for fluids. He spent 4 days in the hospital. We went to see the GI doctor one more time and he wanted to just repeat stool cultures and call it a day. That was our last visit to him.
By now we are to the end of March and still having 8-12 dirty diapers a day. He was referred to Duke Childrens hospital GI doctors. Our first visit, April 2nd was very nice. The PA who we saw was very nice and ordered bloodwork, stool cultures and gave us some ideas.
A week later, bloodwork came back, he was anemic, had high sed rate, neg for celiac. She thought he was having IBD symptoms so she ordered an upper and lower endoscopy and barium xrays. The barium xrays were all normal and he did very well. He drank the barium from his bottle and slept through most of the test. For his upper and lower endoscopies he had to go under anesethia so no food for 24 hours. That was really hard on him seeing how the prep day was his brother's 3rd birthday party. He was very cranky the morning of the surgery but did pretty good. He was put in his hospital gown and was allowed to take him to the OR and then I began to cry so I left. The procedure took about an hour and he woke up screaming. He did really good though.
When the biopsies came back, she diagnosed him with Eosiniphillic Esophagitis, EE for short.

The beginning

February 27, 2009 was the day our lives changed forever, again. Zachary Carson was born by c-section at 7:40 am. He was 7 lbs and 6 oz and 19 1/4 inches long, he came out fighting and kicking. I went to recovery and anxiously awaited baby Zach to join me, but he seemed to have some trouble. Dr. Young came in a little while later to let me know what was going on, he was so excited his heart was beating really fast and they were afraid he had a hole in his heart so they were keeping him in the nursery til he calmed down. I remember going through recovery and then to my room and what seemed like an eternity before I got to see my baby. It was only about 4 hours but seemed a lot longer. He calmed down and was fine, no heart problems..just a big scare!
We went home 2 days later, and the next morning a huge snow storm came into town and baby Zach got to see his first snow (from inside the house, of course). His brother Luke, 22 months at the time, enjoyed the snow and was enjoying his brother as well. Baby Zach was doing really well, he grew and developed like all normal babies. I nursed him for about 6 months, which was nice but tiring. He would nurse and wake up screaming 2 hours later all night. Dr. Young figured he couldn't tolerate lactose so I stoped breastfeeding and we tried formula, first lactose free then soy then hypoallergenic and finally found one he could tolerate. At around 11 months we switched him to cow milk with no problems, so we thought.