Playing catch up

Wow... So much to catch up on... So, Mateo has been doing GREAT! We have not been in the hospital since baby Aneli was about 3 weeks old! So that's almost 9 months! This is a record breaking streak for us! Mateo is doing wonderfully. He is above average for his height and weight, and does everything any other kids his age do. Dr Terry, his gastroenterologist just recently opened his diet, so he can pretty much eat anything he wants minus sugars and regular milk. Not too long ago, we got Mateo off the bottle ( at 3 almost 4 years old!) and we are so proud of him! He is drinking his neocate ( elemental formula) from a sippy cup now and has been weened down to only 3 cups of formula a day. He is eating more food now and tolerating it well.
On the CMN front, because of his story, his strength and his will to thrive, he was chosen as Children's Miracle Network's Champion ( ambassador) for the entire state of Oregon!!

Mateo was celebrated as the Oregon Champion by having a "Cars" themed party right in the main lobby of Sacred Heart Medical Center @ Riverbend! Family, friends, and hospital staff were all there to help us celebrate, and Mateo got a HUGE suprise! Before his party, Eugene and Springfield Fire came to our house with TWO FIRE ENGINES! Mateo got to honk the horn, spray the hose, and was given a hat and sweatshirt that say Springfield fire on them! Better yet, the bigger fire engine drove Mateo and his papi from our house to his party!! How cool is that?! After his party, Mateo expected the engine to be there to pick him up like his personal car! LOL!!
So what being the Champion means is that we keep on doing what we are doing: going to CMN events, sharing our story, etc. And here in 13 days,we get to go to Washington D.C. and to Orlando, Fl ( Disney World!). We will be on our trip for 7 days promoting CMN with 50ish other CMN families! We are so excited and cannot wait for our trip!
One event we got to go to for CMN this summer was a Klamath Falls Gem's baseball game! Mateo got to meet Ms. Oregon and got to throw the first pitch of the game! It was a great weekend!

We are so gratefull for CMN Hospitals and all they do to help us as well as families like us! THANK YOU CMN!!

No more tube!!

So, I realized it's been quite some time since I have blogged. I need to go back almost 8 months to catch up!

Pre- op

Post-op eating a popcicle and watching cartoons!

So, Mateo has been doing quite well, like I said in the previous post. He is truly exceeding every expectation from every one of his care givers. We were not using his G-tube anymore, except for the occassions when he would get sick, I would hook him up to a drip of pedialyte to fend off dehyration. Dr Wadie, Mateo's previous surgeon wanted us to keep the G-tube for convenience, which would be fine, but the G-tube would leak, leaving wet stains on Mateo's clothes, and being wet, it would get yeast infections, and cause "granulation tissue" growth. Granulation tissue is more or less scar tissue. This would bleed on occassion as well, making more stains and needing more care. After several doctors appointments and several visits to the Wound and Ostomy Clinic, and after so many cauterizations at home ( HATED doing that to my little boy!) we met with our new Surgeon, Dr. Zallen at Doernbecher Children's Hospital. His first statement was that we needed to get rid of the G-tube. A biopsy was done of the "granulation tissue" and turned out to not be granulation after all. It was his stomach lining growing up and out of the stoma. This meant that Mateo's G-tube removal wouldn't be as easy as just taking it out and letting it close. It meant another surgury. So surgery was scheduled, and on January 24th of this year, we made the 2 hour drive up to Portland and Mateo had surgery #5. Mateo was incredibly brave and strong and did quite well. We were only at the hospital maybe 5 hours, and we went home tube free!! One less thing for us to care for and be concerned about, and one less thing to set Mateo apart from everyone else! WE were ecstatic! Since the G-tube removal, we have not missed it or needed it at all! He is continuing to do amazing! Dr Zallen was a great surgeon, and we are happy to be working with him.

CHANGES

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".

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!

GOOD STREAK GONE

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!

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!

GREAT GASTRO APPT

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!