Tuesday, January 25, 2011


Yesterday after Mateo's labs, I got a call from the doctor's office. They said his labs were all normal except for his glucose. It was a little bit high. So in two weeks, they want Mateo to fast and then repeat the labs. This does not make me very happy. It is hard to have a 2 year old "fast". And it is a huge ordeal just walking into the clinic let alone letting someone poke him and draw his blood.
On to this morning. It started out like any other morning. Mateo woke up and called me. "mommy! Mommy! Ven! (come -in spanish) I go to his room and he says "I want out". He is still sleeping in a crib. He hasn't even attempted to climb out, and I find it easier with him being connected to his feeding tube at night. So, I take his PJ's off, change his diaper, disconnect his feeding tube, change the dressing, and I lift him out of the crib and stand him on the floor to go empty his colostomy bag when I feel something hit my foot. I look down and his mic key button is laying on the top of my foot. I pick him up and lay him on his changing table (yes, i still use that too- easier for bag changes, etc) and I get the phone and call the surgeon's office. I have a spare mic key just for this type of occassion. But I have NEVER actually needed it. When his tube has come out (twice) it was with the sitter or at the hospital. I get on the line with the nurse and she walked me through how to replace the tube. I have seen it done a few times, but it's different when you're home alone and in a little bit of a panic. But I got the new button in, and Mateo survived! LOL. I'm still a bit shaky and nervous after the whole ordeal, but we made it through, and now I'm confident that if it happens again, I will be able to handle it on my own! Mateo was quite the trooper. After wards he wanted to tell everyone that "tube come out, mama fix it. " LOL!!!

Sunday, January 23, 2011


A few days ago, I received a letter from Mateo's gastroenterologist, Dr Annie Terry, from Doernbecher Children's hospital. It stated that Mateo's sodium levels were off, and that we need to get him in for some labs. This means that we get to go to the pediatrician to get orders to have his blood drawn. This is one of the hardest things we have to do with Mateo. He gets uneasy just walking into an exam room, and when they position him on my lap and hold his arms down, he knows exactly what is happening, and immediately starts getting VERY upset. It breaks my heart to see and feel my little boy so frightened and stressed. I know it is for his health, but I wish there was some other way!!
Back to the sodium... Mateo has an ileostomy. His bowel movements are very liquidy, and he loses a lot of sodium, which can and DOES cause dehydration. Mateo's bases of nutrition is an amino acid based formula called Neocate. When we give Mateo his neocate to drink, we add 5ml of sodium to every 100ml feed. This helps to replenish what he loses through his ileostomy.
While we are at the doctor's office, Mateo also needs to get his weight checked. We go in to the pediatrician once a month to do this, to keep up on his progress and to make sure he is not losing weight, or gaining to fast. In either case, it causes a visit to the dietician, also at Doernbecher's, to make adjustments to his feeding.
Mateo's appointment with Dr. Young (pediatrician) is tomorrow morning. I won't have any results for a bit, since his blood will be drawn and sent back to Doernbechers, then the results will be mailed back to me. As soon as I find out anything, I will be sure to post!
On top of this, Mateo's G-tube, which is a Mic Key button is protruding from his tummy. I called the wound and ostomy office, but they referred me to the surgeon's office. I called there, and was told to anchor it with gauze and tape and to make an appt with Dr. Wadie. So on the 31st, Mateo has yet another office visit. This one will be to look at his G-tube to see if he needs a new size (he has grown and gained weight since this one has been put in) or if it just simply needs to be replaced. Again, i will post with more info when I get it!
Thank you to those who follow our blog, and please help us by simply spreading the word and raising awareness of this not so fun disease!

Sunday, January 9, 2011

feeling blessed

Another HD mom that I connected with on Facebook did a blog for a week straight, documenting life with HD. She really inspired me to do more blogging about Mateo, not only to inform others and to spread awareness, but also it records what we are going through, and gives a "record" for us to look back at...

So, Mateo is continuing to do well. We still have not had any abdominal distension, dehydration, or any of the complications that used to be our "norm". And I am so grateful that we have avoided hospital stays going on 3 months now! I think it is a new record!

The only complication we have had, is a problem we have always had, and that is that we STILL have to change Mateo's bag at least every 24 hours. Even if the bag is not leaking, Mateo will come to me, rubbing or scratching at where his stoma is (through his clothes) and will tell me, "mama, tummy hurt." Or "empty bolsa"-spanish for bag. When I look at his bag, it is usually starting to lift up around his stoma, which means the stool is getting underneath his bag and sitting on his skin. If he is saying his tummy hurts, the stool is more than likely eating or breaking his skin down.

So from here, I don't have much of an option, but to change his bag. I cannot ignore him and leave him like that, for fear that it will cause greater harm to the skin around his stoma. I have yet to find a bag that I can leave on him for more than the 24 hours... The plus is that I have been doing less poopy laundry, since Mateo has learned the signs and the feeling-- he tells me when he needs to be changed before there is a mess. The only exception to that is in the middle of the night while he is sleeping.

I am trying several different products now, thanks to yet ANOTHER HD mom. Her name is Vanessa, and she is truly amazing. She read about our struggles on Facebook, and jumped to help! She mailed us 2 boxes of ostomy supplies. Pouches, closures, barriers, the works! I am sooo blessed to meet HD moms and to have support from others who have or are going through what we go through on a daily basis! I am beyond grateful to her for all of her help and advice!

I will continue to update as things progress and change. Thank you to those who keep up with us and follow Mateo's adventure. Please help us to spread HD awareness!

Friday, January 7, 2011

insurance battle

So, since Mateo was born, he has been on OHP for medical insurance... With 300k bills coming through for hospital bills, I am beyond grateful for the coverage. There are some downfalls though. They don't like to cover much when it comes to supplies. We went through a battle at the very beginning- a little over 2 years ago, to get the amount of supplies needed for Mateo, since his condition is different than most. The doctors did the fighting for me, as we were in the NICU for about 3 months....
Well, after surgery in October, his ostomy was revised, and he outgrew his pouches. I did some searching and some trial & error and found a pouch we like. I go through all the hoops, only to get a letter back saying the request for the amount of pouches (50 a month) was denied because it is over the allowable limit (20 a month). Having an ileostomy and liquidy stool, I change Mateo atlease once every 24 hours, if not more. And HELLO! there are on average 30 days in the month??
So here started my 2nd battle of trying to get Mateo his supplies... Phone call after phone call, getting the run around... Nearly drives me crazy! I do have to say I am beyond grateful for our surgeon, Dr. George Wadie. Whenever I need ANYTHING from him, he makes sure to get it done. He wrote new chart notes, sent a letter of medical necessity, as well as filed an appeal to OHP on our behalf to get Mateo what he needs!!! AND we are also grateful for the staff at Wound & Ostomy in the hospital... Whenever I am lacking supplies, or there is lag time before getting the next order, I simply have to call them, and they literally GIVE me what I need to hold me over! I am so thankful to have such amazing support when it comes to caring for Mateo!
I know this is pretty much a vent fest, but I post it just so people can see what it is like in our world. There are tons of hoops and hurdles and bumps in the road that we have to travel! And what i put here is just a small portion!

Tuesday, January 4, 2011

OHSU appointment 1/4/11

Wow... So, it was a fun filled night.... I was sleeping peacefully until Mateo woke me up with a cry. His pouch was leaking at 4 something in the morning. So I get up out of bed, change his pouch along with his pjs and the gauze around his gtube, which is not a quick event... I get back to bed and Mateo, mad at me for having to disturb HIS rest, is whiny for the rest of the night.
We get up, have breakfast and get ready for the drive to Portland, which is about 2 hours away. We are going to see his gastroenterologist, Dr Annie Terry at OHSU-Doernbecher Children's Hospital.
The drive is uneventful and we get there with time to spare. The doctor comes in and examines Mateo and is astonished at how well he is doing. Mateo weighed in at 30lbs 10.3oz and his height is 2'11". His growth chart looks awesome! We had labs done while we were there to check his electrolytes to be sure he is getting everything he needs, which Mateo was less than thrilled about, but for being a good patient, he got 3 stickers, a 4 pack of Playdoh, and a bouncy ball. :)
After the blood draw, we saw the dietician. She recommended that we cut Mateo down to 5 nights a week on his drip feeds (YAY!!), as well as to introduce some fats into his diet. :) The only other change was to decrease his prilosec to once a day... which is good, less work for mama!
All in all, there was not a negative comment this entire visit. I think about it, and I am so very grateful that Mateo is overcoming HD, and that he is fighting against the odds, and kicking ass every step of the way! Mateo is supposed to be small and under weight. He is exceeding expectations in every way. We even got a compliment from the nurse at how well he talks for being only 2 years old!
I am so proud of my baby boy for fighting with all his might, day in and day out! He is a fighter, and I love him with all my being! I couldn't ask for a happier, stronger lil man!!