Sunday, October 9, 2011


Wow, this year has brought a lot of changes to our family. In March, we found out that Mateo is going to be a big brother! We will be welcoming Aneli Leraine to the family in November! Mateo already loves his baby sister!

Shortly after finding out we are adding to our family, we also got smaller. Mateo's dad decided that it is best that he not live with us anymore, and has moved out. So our household now is Mateo and mommy and soon- Aneli as well. We are doing well with this change, and Mateo gets to spend plenty of time with his papi.

Along with his huge change, there was more! Mateo's surgeon, Dr. George Wadie decided to leave Sacred Heart Medical Center @ Riverbend to move to the East Coast. This news left us as a family devestated. Dr. Wadie has been like part of the family since Mateo was born. He has done every surgery and every procedure that is associated with Hirschsprungs Disease (HD). There is not one single soul in our area that has any idea on how to treat HD or the problems associated with it. Before he left, Dr. Wadie did reccommend that we switch pediatricians as well. So we have an ENTIRE NEW TEAM working on Mateo's case. His new pediatrician is Dr. Lorna Wong with Peacehealth pediatrics. So far so good with her, I hope we continue to work well together. As for a surgeon, Dr. Wadie suggested Dr. Garret Zallen at OHSU in Portland, seeing as Sacred Heart has not found a preplacement pediatric surgeon. We have a meeting set up in November to meet Dr. Zallen. As a mother, I am completely in a panic about all these changes- Mateo has done so well up to this point. His growth, his weight, everything. And with all new doctors, I don't know if this trend will continue, and this scares me so much! But, what can I do? I do what I can, and that is to research and find the 2nd best for Mateo, since the BEST is no longer in our area... I will update as we know more about our new "team".

Thursday, June 9, 2011

The Dreaded EC

We have had a great run in the last 7 months. No HUGE problems, no hospitalizations, no bouts of dehydration or gastroenteritis... It has been amazing to have a healthy boy for so long. But, as they say... all good things must come to an end. And so they did. Mateo caught a stomach bug, and was just having really watery output from his ileostomy. I was keeping a close eye on him, and pushing fluids. Then on May 30th, we went out to breakfast as a family, and at the restauraunt, Mateo said he was sleepy and layed down on the booth seat. Then he got up and said his tummy hurt, and proceeded to throw up all over the table, again all over the floor and all over mommy. So we ended up getting our food to go, and headed home. I tried to continue to push fluids, but he had lost interest by this point. He was starting to look bad, so I took him to the doctor. Being Memorial Day, we had to go to the after hours clinic, and see an on-call dr. Well he looks, YES, looks at Mateo and says he 's only 5% dehydrated and to give him pedialyte at home. He'll be fine. Yea, no one knows exactly what to do with a sick TCHD kid. So we go home and Mateo deteriorates so fast! So we ended up at the ER with in hours. Of course, he is very dehydrated and needs to be admitted for IV fluids. His surgeon is called, and diagnoses Enterocolitis. It is an infection of the bowel that can be FATAL if not treated. So, antibiotics, IV fluids, and a 4 day, 3 night hospital stay, and we are all back home and into our daily routine again. Mateo is back to his 2 year old self!

Thursday, May 5, 2011


Hirschsprungs disease is very complicated. There are days when I almost forget that my son is any different than anyone else, despite the bag changes and meds given. We have had a "good streak" or so what I call it, for nearly 7 months. Mateo has had no serious HD related complications, and has yet to be a patient in the hospital since his surgery in October 2010. Things have been good. Great, in fact. His growth has been amazing, along with his weight gain. He has been weaned off his G-tube feeds and has been doing great. It was a challenge at first to get a decent night's sleep, but he now sleeps through the night with out waking up feeling hungry. (but boy does he want breakfast!) So, really, things couldn't have been better up until about 2 weeks ago. Then ugly HD rears it's head...

Mateo started complaining that his "pee pee" hurts. So I take him to his pediatrician and have him checked out. The doctor looks at him, takes his temp (normal) and decides we should get a urine sample to check for a UTI. Well, Mateo isn't potty trained ( no where near it) and will not pee on comand. So when the nurse handed me a cup and asked for a sample, I couldn't help but laugh and ask if she's serious. From there we had 2 options. They could put in a catheter, which is VERY uncomfortable, but accurate, or they can "bag" him, which does not cause any pain, but isn't as accurate. I voted for the bag for Mateo's sake, he's poked and prodded quite enough in my opinion... Well, he wouldn't do his duty, so I took him home, and returned the sample later that day, which came up negative for a UTI.
We go about our business, and occassionally Mateo would make a comment about his pee pee hurting, but I didn't think much of it. I figured it was mental-- not wanting to potty train. Well 3 days ago on May 2nd, I was getting Mateo ready for bed, and when I changed his diaper, much to my surprise there was some brownish smearing in the backside. I was concerned, but being 8 at night, there wasn't much for me to do until morning. In the morning, I get him and change his diaper again, and there is more smearing, with a small (pinky finger tip size) piece of what looked to me like a bowel movement. Yes, I thought the same thing... HOW IS THAT POSSIBLE? So I do what I always do, jump on Facebook and ask the other Hirschsprungs families for advice. I of course also call Dr. Wadie (surgeon).
Dr. Wadie says this is totally normal. That while in surgery, he had left the left side of Mateo's colon, and that it does make secretions that will be expelled and that they look and smell like bowel movements, but definately aren't. Ok, I understand this, but why is he complaining that his pee pee hurts? Dr. Wadie suggests that it is a UTI, and refers us back to the pediatrician. We go, and since we've already tested him once with negative results, he recommends doing the catheter. I consent, because I just want my baby to get figured out and to feel better. Well they do the catheter, and from Mateo's reaction, it was VERY painful. And it was all useless. Mateo had a "dry bladder" and they ended up bagging him again and sending him home. I take the sample in this morning and wait ALL day for the results.

I'm sitting at work when I get a call from my aunt who takes care of Mateo while I work. She says that Mateo is complaining more and more of pain, put now pointing to his bum. He is also not being active and wants to be held and to sleep. I call Dr. Wadie back and tell him that the secretions are still happening, and they smell horrid. He tells me to wait for the results of the urine test, and that if the results of that are negative, that it could (VERY RARELY) be Enterocolitis (EC). EC is an infection of the colon and if not treated is fatal. So the thought of this scares me, so I hope for the best.

The results come back and are negative for a UTI. So Dr. Young and Dr. Wadie converse and decide to put Mateo on an antibiotic called Flagyl to treat EC in case that is what he is suffering from.

I'm worried about the EC but at the same time, happy to get some sort of answer and to help my little boy.

Then comes another issue. INSURANCE. Because I only work part time so that I can take care of my son, I don't make a ton of money. My son has OHP insurance (from the government). Well, I feel that because of the insurance he has, he gets treated like a second class citizen. The doctors faxed in his script, and because of his insurance, the pharmacy can't guarantee me that we will even have the Flagyl before the weekend. So my son is supposed to sit here, hurting and having an INFECTION, and deal with it until the pharmacy can make sure they will get there money from OHP. I get so frustrated sometimes, I could scream, kick, cry.... ARGH. He's just a little boy!

The one and ONLY thing that helps me to keep my sanity through all this is the little 2 year old boy who looks at me and sees his HERO, his mommy. I love him more than life itself. And it's hard not to fall apart sometimes... But I know that I have to be strong for him. He is a sweet little person and doesn't deserve any of this. I hope and pray that some day someone out there will find a way to prevent HD and to cure it.

When that happens, it will be nothing but Good Streaks from then on!

Friday, March 18, 2011

Sick Times

This post is totally not HD related in anyway, but I just wanted to give a reminder that kids with HD not only have the health problems associated with HD, but they do still endure all the other stuff that comes with being a kid.
Mateo caught a cold a couple weeks ago. He had a runny nose and a cough. His cough started to get worse, and then he started getting high fevers and lost interest in eating, so I decided it was time to take him to the doctor. We make it to our appointment, and the doctor looks in his ear and says, "oh, it's infected. I can see puss." My poor boy had an ear infection and I had absolutely no clue. He didn't fuss or pull on his ear, or complain at all. I felt like a horrible mother. And it gets worse.
The doctor then proceeds to finish Mateo's exam by listening to his lungs. She stops and asks me, "Does he have asthma?" I tell her no, or at least it's never been brought up. She then tells me he has fluid in his lungs, otherwise known as Pnemonia. I felt so bad for my baby boy! So, along with all his HD related meds, he now has antibiotics twice a day for 10 days, ear drops, and an inhaler to help with his breathing until he kicks the pnemonia. He was also taking Motrin for his high fevers.
Thank goodness he is doing much better. The fevers are gone, the pain from the ear infection has subsided ( I think cuz he's not as whiny and clingy) and his cold syptoms are going away. He still does have a cough, but it is not as bad as it was.
One HD tidbit, I am currently working on writing the local News and Newspapers trying to get someone to run a story on HD to help raise awareness. Wish me luck!

Wednesday, March 2, 2011


Mateo had a follow up with his gastroenterologsit at Doernbechers yesterday. It was a GREAT appointment. Mateo weighed in at 32lbs 1.1oz and he is 3 feet tall. His growth chart looks amazing. Dr Terry said that this is because of the surgery (Step Procedure) that pediatric Surgeon Dr Wadie recommended for Mateo back in October of last year! So it was well worth it! Mateo is doing exceptionally well!
As for changes, we didn't have to do any labs, which I was greatful for. She said to decrease his g-tube feedings to 3 nights a week, but to have a weight check done in 3 weeks to be sure he is still gaining. If he is, I am to call her with the weight and she will decrease him by another day until he is completely off g-tube feeds!!! We are making such good progress!
After this, in 4-6 weeks, we do need to get labs done, to make sure all of his levels stay consistant since we are making some drastic changes to his diet.
And, we don't have to go back to Doernbecher for 3 months!
Mateo is such a strong and brave little boy. Every day I look at him and I see a fighter. He has been through more in the last 2 years than I have in my entire 28 years of life, and he is still as happy as can be with a smile on his face! I couldn't be more blessed. :) I love love love this lil man with all my heart and soul. I am so very proud of him!

Wednesday, February 16, 2011


I'd like to start today's post by stressing the fact that I HATE DOING LAUNDRY. Don't get me wrong, I like for us to have clean clothes, and I don't mind putting the close in the washer and then transferring to the dryer, but I hate sorting, folding, hanging and putting away the finished product.

Having an HD child makes me do a lot of things I don't "like" doing, and laundry is one of them. I do an excessive amount of laundry. Having an ileostomy, Mateo's output is not normal. It is more watery in consistancy. Sometimes completely liquid. And ostomy bags don't hold well with liquid output. So, Mateo's bags will leak, causing dirty clothes, and he will need to be changed. Worse case scenerio is what happened this morning.

I wake up and can smell a well... SMELL. Mind you, Mateo's room is down the hall from mine, past 2 closets and the bathroom. I get up to go check on the situation, and Mateo's ostomy bag is still in place, but the closure came unsnapped. The entire contents of his bag since 9pm last night are now all over him, his blankets, pillow, and crib. This is cause for me to strip and clean his entire bed, strip him down and put him in the bath, as well as sterilize his G-tube attachments, as he was on a drip feed last night.

I know kids in general go through a lot of laundry, but add HD to the mix of things, and I could have a full time laundering job!

All I can say is " oh the joys of being an HD mom"!

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!!