HUGE UPDATE

Bear with me, If you can read all this then you obviously love me with all your heart :)

Last time I wrote I had to quit breastfeeding to see if Kaiden was reacting to my breastmilk. After just a few days his poop started to solid up so i thought we finally found the answer to his Diahrea and FTT (Failure to thrive) however he did still have his tummy pains and even though his poop got more solid (it was mushy still, but not runny) he was still going like 5-10 times a day, but I wasnt worried. A month after I quit we went for his monthly weight check and he LOST WEIGHT!! I was completely flabbergasted, I thought for sure he would have GAINED weight!! So he was down to 18lbs 8ozs. and off the charts for his weight and age. So his Pediatrician contacted Dr. Cox at Lucille Packard Childrens Hospital and said that he needed to be seen asap. They called on a Friday, and let us know we had an appt that following Monday!!! Its a 4-6 hr drive from here, so on Sunday we went to the Grandparents house and stayed the night, then left monday for the appt. It was my first time ever being to a huge hospital like this! It was so scary for me, that my son had to be seen at a childrens hospital! I never ever saw that happening to any of my kids. It was really cool. Lots of bright colors, bright furniture, toys, large screen tv's, etc........

When we got called in their scale showed he lost more weight (although different scales can vary) anyway, Dr. Cox had a family emergency so we saw his assistant who took tons of information and had to keep leaving to talk to other specialists like nutritionists and such. She ordered another blood test, more stool samples, etc.... The stool samples came back that he wasnt digesting his Fats and Carbohydrates, hence the loosing weight/not gaining weight! So then they ordered a sweat test to test for cystic fibrosis. That was such a scary test because of the scary result it could be!!! It came out NEGATIVE!! WHEW!! Big sigh of relief.

After those tests an Upper GI small bowel follow through was scheduled. So in early january we had to go back down to Palo Alto for that. The whole thing took a long time, but wasnt that hard to go through. here are some pics:






The results of that came back normal.

In mid January we had an appt with Dr.Cox again, but this time in Chico. Unfortunately once again he was away so we had to meet with a different GI Dr. who was a complete JERK!!!! and basically acted like we were making something out of nothing! we left there pretty irritated!!!

On January 30th we had another appt in Palo Alto, this time for a colonoscopy, endoscopy, and pancreatic function test. I was sooooooooo nervous!!! He was going to be put under and have a breathing tube put in. We had to be there BRIGHT AND EARLY AT 6AM!!!
We were brought into a prep room where different ppl came in asking alot of questions. Putting hospital bracelets on him, a hospital gown. Gave him a pre-med which is suppose to make him a little sleepy so he doesnt get to scared before they do the anesthesia. Finally the Dr.'s came up with the hospital crib. We had to follow downstairs into the procedure room where they started hooking stuff up to him, and put the mask over his face to put him to sleep. we got to be there and it was soooooooooooo hard!! I was trying to be strong and hold back the tears but couldnt. He was tossing his head back and forth trying to get it away from his face, then his little eyes started rolling into the back of his head (this is where i really started crying) and he was asleep!!! Then I had to leave my precious little boy in the room with a bunch of strangers, I bawled like a baby in the waiting room! I didnt want him to go throught ANY of that EVER!!! and I didnt want to go through it either!! (oh, Big Brother Ethan was with Grandma Bonnie at her house) We went and got something to eat at the cafeteria then came back and waited some more, Neils got a little nap in, I couldnt relax enough to sleep! Dr. Cox came in and told us that it was done and he was being wheeled up to recovery and told us how the procedure went, it was so hard for me to sit and listen when all i wanted to do was be with my little boy!!!! Anyway, he had two sets of pictures. One set of his upper stomache where it showed some irritation in spots, and then a set of his lower stomache/bowel where there was ALOT of irritation and some bleeding. He said on a scale of 1-10, 10 being worse, it was a 10. They took biopsies from everywhere. It was going to be a few weeks before we got the results back from anything.

We finally got to go up and see our Baby boy! He was fast asleep still with everything hooked up to him! it was so sad. He looked peacefull though. They left the covers off his shoulders, so i immediately covered him up, made me feel like i could do something to help him as his mommy.
He slowly started stirring awake, I got freaked out at one point because his neck was pulsing REALLY fast and I thought it was because he couldnt breathe, lol, it was his heartbeat silly me! LOL. Anyway, he woke up and was very uncomfy and crying, I picked him up and tried consoling him but it wouldnt work :( He kept trying to pull his IV out, he HATED it! and his tummy was hurting him. He let out a few HUGE farts. a few minutes later i noticed my hand was wet and wasnt sure why. Well, it wasnt a HUGE fart after all, it was water diahrea. So i put him down and changed his diaper, where he had about a teaspoon of blood, which i was told could happen. Then he fell fast asleep on me. So we sat there waiting for the hour to pass to make sure he wasnt going to have any reaction. Then they took everything off of him and we could leave, but not leave the town for another hour because of him bleeding, they wanted to make sure he didnt bleed any more. He didnt bleed anymore so off to Grandmas we went. I was SOOOOOOOOOOOO glad to be out of there!!! We picked up Ethan and headed home. Kaiden was pretty drowsy and slept pretty much all day which made the trip much easier.
here are some pics from the experience:







It was so hard waiting for the results! about a week later we got the results back from his biopsies and everything was normal, no allergies, SO HE GETS TO EAT DAIRY PRODUCTS NOW!!! YAY! So now we were waiting on the Pancreatic Function Test results.
Those took THREE WEEKS!!! and it showed that his Pancreas wasnt releasing the Amylase Enzyme needed to digest food! Which is why fats and carbs were going right through him. The other enzymes were on the low side of normal. So now he has to have Pancrease put into everything he eats! its been tough but we are learning and adjusting to this new routine. A friend called and told me that usually with Pancreatic Insufficiency its because of Cystic Fibrosis and that her son has it. I told her that the sweat test was negative, and she said so was her sons (his number was 33, 40-60 is borderline, over 60 is positive) so she told me to call the Dr. and ask what his sweat test number was. It was a 44!!!! When I called and they said the number, it was like my mind went into instant denial. I got off the phone thinking "whew, big negative" then it immediately kicked in it was borderline!!! So i called Dr. Cox and told him I would like the genetic test done. He agreed. So once again, another blood draw. This was the HARDEST wait of them all. I was so tore up that it was such a possibility. I cried every day and was just SCARED TO DEATH!!! anyway, the results came back NEGATIVE!!!! But, they only tested 32 out of over 1500 mutations!! So now I need to call Dr. Cox back and let him know we would like ALL genes tested!!

This has been such a hard road!!! Its so frustrating and so hard. I have my good positive days, and my sad depressing days. At first I was happy to have the answer about his pancreas. But when I picked up the meds for it, I cried, it hit me that my sons pancreas doesnt work like it should! like everyone elses. I cant really explain it, but i get a little sad everytime I open one of those capsules. I know its silly, but its the truth. Yesterday at dinner Ethan asked why Kaiden always has to have medicine in all his food, and we said its because his tummy doesnt work like its suppose to. and he asked if his did, and we told him yes, so then he asked why Kaidens tummy doesnt. Neils explained it like a car that runs and a car that doesnt. I dont know if Ethan understands, but Neils explained it pretty well. It made me sad that we had to explain something like that. I still feel like im in denial that my son has an organ that doesnt work right. I just never thought of anything like this happening. I thought for sure it was a food allergy.
BUT i am very very thankful that there is a medicine I can give him to help him. and that we do have an answer even if it brings even more questions to be answered! LOL. Its so rare that you cant really find any info on it, cant find anyone else in the same boat that DOESNT have Cystic Fibrosis. The Dr. cant really say alot, there are so much variables. we basically have to wait and see if he outgrows it. Anyway, I know I might sound dramatic, but its how i feel, and thats why my blog is here :) for me to get it all out! even if it is irrational.
When he gets all his enzymes he only poops once or twice a day! he is 18 months and weight 19lbs 10ozs, still off the charts, but hopefully with the enzyme he will put some weight on fast! He has only been on it almost 2 wks and just got over the flu.

I think thats pretty much it for now.