Happy 2nd Birthday Baby Zach

Today is baby Zach's birthday, very bittersweet to know my baby boy is getting older but happy that he is here and able to celebrate his birthday with all that he has/is going through. He had a wonderful party, it was small with family but very nice. He got lots of toys, mommy and daddy got him a 4 wheeler and he loves it! He also had a non edible cake...a John Deere tractor pinata filled with lots of tiny toys and stickers. Him and his brother had lots of fun smashing it open. He spent the day playing and having fun like a 2 yr old should, not worried or caring about the tubes in his belly or the many dr. appts coming up. He didn't have any food at his party...he didn't even care, it's funny how it is so expected to have food and cake at parties..but when you can't eat, you just focus on the other things and you get creative with "cake". He blew his candles out and we sang "Happy Birthday" like you normally do but instead of eating cake, he got to smash his pinata and discover toys and stickers inside. He had a wonderful day with all of his family!

Surgery, number 4

We had to be at Brenners at 6 am Thursday morning for his surgery. Zach was upset since he didn't get any bottles since midnight. I had been up since 3 am with him screaming for one. We weren't there long before they called us back and placed us in the holding room. There they took his vitals, weight and he got to put on his hospital gown. The anestheoligist came in, and we couldn't have asked for a more experinced one. He was a pediatrician, then became a pediatric GI doc and now a pediatric anes. How cool. The minute he came in he said he had been waiting all these years in all the different practices to see a sucrose-isomaltase def patient and now he gets one. I was like, yeah here you go..my child is a picture perfect image of CSID.
Amazingly, we have to explain his situation to everyone who comes in to see him, I would rather be safe than sorry so everyone hears it over and over. However I did have one of the nurses argue with me about pedialyte containing sugar...it does, believe me.

His surgery took about 2 1/2-3 hours and they finally called me back to recovery. He woke up from surgery beathing funny...he has suspected tracheomalacia, which is where he has weak muscles in his throat and excitement or coughing causes them to collapse resulting in a stridor type sound. They gave him a breathing treatment and then we went to our room. He was in acute care on the 8th floor. He was hooked up to heart monitors, iv poles, and a tube draining his g-tube. His new tube was right under the g tube and he had a 2 inch incision above his belly button. He did good, slept most of thursday from the anesthesia and morphine.
About 5 pm we noticed some red spots starting to show up on his face and down his back but they said it was from the morphine and it was fine. Then about 6 pm he spiked a fever and his oxygen levels dropped. They had to put a nasal canula with oxygen on him for a bit to bring them back up....apparently after surgery sometimes, little air pockets in your lungs can collapse from being on the vent during surgery.

He spent three more days in the hospital and we finally got to come home at 5 pm on Sunday. Tuesday we had a little scare with him vomiting and running a fever and being consitpated. We had to get an xray at Cone and thought we were going to have to be readmitted but all worked out fine. He is doing much better today!
He is back to his normal self, jumping and running everywhere.

Thank you everyone for all your thoughts and prayers, they were much needed and helped pull him through.

It was confirmed

He had his gastric emptying test done last friday at Brenners and it confirmed what we thought. He has gastroparesis, his stomach is in nowhere land not paying attention to what it should be doing. So we know the surgery is needed. The GI put him on a new med over the weekend to see if it would help and honestly I can not tell any difference. Tomorrow, Becky his nurse is coming to weigh him. It is a day earlier than her usual wednesday visits but the doc wants to see if he is still losing weight. We only have 2 more days til his surgery so things are hectic. Please prayer that his surgery goes well on Thursday!!

Updates

We have a very busy next couple of weeks and months. Tomorrow, the 11th he is having a gastric emptying study done at Brenners. This will show us why his stomach is living in nowhere land and not functioning like it should be.
Next Thursday the 17th he is having major surgery. He is having a j-tube placed but the surgeon, Dr Petty (we love him) is placing a more permanent one. He is performing a rou en y jejunostomy which is where they will make an incision in his abdomen, cut his intestines and re route them into a y shape and attach one end of the y to the stomach wall and in the other end of the y they will place the feeding tube. He will be hospitalized for at least 5 days depending on outcome of the surgery. Please pray he does good. This tube will allow us to pump more formula into his system bypassing the stomach.
Poor baby, when he gets home from the hospital it is only days til his 2nd birthday. He is having a John Deere party with his closest friends and family. We have no food at the party and his cake is a box, spray painted and covered in sand to look like a pasture, I am placing plastic horses, trees and hay bales on it and a toy filled John Deere tractor pinatia on top. And of course a big number 2 candle to blow out.
His Cincinnati Trip is scheduled for April 4-8th so only 7 more weeks! We are really praying that they can give us some insight and hope to what is going on with Zach.

Special child

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth
It was time again for another birth.
Said the Angels to the Lord above –
“This special child will need much love.
“Her progress may be very slow
“Accomplishment she may not show.
“And she'll require extra care
“From the folks she meets down there.
“She may not run or laugh or play
“Her thoughts may seem quite far away
“So many times she will be labeled
“'different,' 'helpless' and disabled.
“So, let's be careful where she's sent.
“We want her life to be content.
“Please, Lord, find the parents who
“Will do a special job for you.
“They will not realize right away
“The leading role they are asked to play.
"But with this child sent from above
“Comes stronger faith, and richer love.
“And soon they'll know the privilege given
“In caring for their gift from heaven.
“Their precious charge, so meek and mild
“Is heaven's very special child.”

Explanation of CSID

Congenital Sucrase-isomaltase Deficiency (CSID) is a chronic malabsorption disease characterised by an autosomal recessive inheritable disease of sucrase and isomaltase deficiency (Hauri, 1985; Kerry, 1965; Naim, 1988; Newton, 1996). Patients with CSID have a complete or almost complete lack of endogenous sucrase activity, a marked reduction in isomaltase activity, and a moderate decrease in maltase activity (Auricchio, 1965; Treem, 1993).

Sucrase is an enzyme produced in the brush border lining of the small intestine and is responsible for the metabolism of sucrose, a disaccharide commonly known as table sugar, into two component monosaccharides, glucose and fructose, which are then absorbed into the circulation (Sterchi, 1990; Treem, 1995).
In the absence of the sucrase enzyme, sucrose cannot be absorbed and passes unchanged into the large intestine.
The presence of intact disaccharides in the intestinal lumen leads to osmotic retention of water, resulting in loose stools (Treem, 1995). Unabsorbed sucrose in the large intestine is broken down by colonic bacteria, producing among other things the gases Hydrogen, methane, and carbon dioxide. These gases generate gastrointestinal discomfort including excessive gas, bloating, abdominal pain and cramps, watery diarrhea, nausea and vomiting (Berkow, 1992; Davidson, 1967).
Thus, children born with CSID develop a malabsorption syndrome upon first exposure to sucrose in their diet. Usually this is in the form of infant formula since breast milk does not contain sucrose. Because these children are unable to digest a significant portion of their caloric intake, they often have retarded growth and a failure to thrive (Antonowicz, 1972; Gudman-Hoyer, 1985; Newton, 1996; Treem, 1995). Added features may include irritability, lethargy and sleep disturbances.
CSID is a difficult disease to diagnose.