Our CMN interview

http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DAbE2a4Litn8&h=258d0

December 2010

Wow, amazingly enough, we made it through the holidays with out a hitch. Ever since Mateo had the Step Procedure done back in October, he has not had one bout of gasroenteritis or dehydration. We have not seen the inside of the hospital (as patients) since he was discharged after surgery!! I couldn't be happier! :)

Mateo is doing well all in all. His weight jumped dramatically since his discharge from the hospital. We are working closely with his dietician at OHSU. He is currently fighting a nasty cold; deep, harsh cough and runny/stuffy nose. I took him in, and they said it turned to a sinus infection, so he is on antibiotics and now is doing much better.

Lately, well since surgery, I have been struggling to find the right appliances or bags if you prefer, for Mateo. His output is a little bit more of a thick consistancy, but he is still needing changed every day or more.

To top it off, I am struggling with the insurance, who decides that 20 bags per month is the max allowance that will be covered, even though for the last two years, we have been receiving 50. His sript changed after his surgery in October, because he has outgrown the previous bag, and his stoma is about 2-3 times larger than it was before surgery. So, I have been on the phone for days with his pediatrician, surgeon's office, the Ostomy Supplier, LIPA (insurance), and his Ostomy nurse. I WILL get these 50 bags a month if it KILLS me!!!! It drives me crazy how many hoops you have to jump through just to get what is MEDICALLY NECESSARY for my child. It is so hard sometimes just to cover the basics!! He seriously can't go without ostomy supplies!! Come on NOW!! ARGH! People just don't understand!

Anyhow, I had to vent there for a few... So back to Mateo! He is doing so well and I am so happy!! We are working on wiening him off of his G-tube... working with his dietitian. We also head to Doernbecher (OHSU) in Portland to see his gastroenterologist on the 4th. This is routine, we go to see her about every 2 months or so. At that appointment we usually take care of his labs and see the dietitian as well. 3 birds with one stone. :)

Christmas went well. We had my extended family over to our house and exchanged gifts. My mom spoiled Mateo. (he is her only grandchild). For Christmas eve, we went to my mother in law's house with family. We ate good mexican food and exchanged gifts. Mateo got new clothes and some cool toys! Christmas day, I was really sick and slept most of the day, but we did have our own little family christmas and opened stockings together!

It's been a year to remember, that is for sure. We have had many, MANY bumps along our road, but it's our adventure and we are taking it day by day!!!

End of November '10

It's been a while after Mateo's surgery, so I figured I should update the blog! Surgery seems to be successful. Pre-op, Mateo weighed in at 23lbs, and post-op at his appt at OHSU with his gastroenterologist, he jumped up to 30lbs!! So, the STEP procedure has definately helped his absorption of food!
Dr Annie Terry at OHSU couldn't believe it! So, she has lowered his sodium intake, as well as allowing him to go 1 night a week without being hooked up to his G-tube for feeds. We have to go in for a weight check here in a couple weeks, if he is still gaining weight, we will cut another night, making it only 5 days a week with G-tube feeds! That would make mama very happy!!
The consistancy of his output has changed as well since surgery. It has been thicker, almost pasty, which has been amazing, no more chaning pouches multiple times a day, or even every day. We have been having pouches that stay on for 2 days, which has been unheard of for Mateo! Things are really starting to look up!

Mateo is also really growing into a lil man. He now tells me when his pouch is coming off, or "leaking" in his words, which has avoided BIG messes, which I am beyond grateful for.

We are currently woring with CMN and doing what we can to give back. I recently told Mateo's story to a group of students from the UofO (UofO Dance Marathon Retreat) and they have asked us to tell our story at the Marathon as well, which we will of course. And this Thursday, we will be at Sacred Heart for the Credit Union for Kids Raffle, benefitting CMN. We get to draw the lucky raffle ticket winner and the grand prize is a.......... CAR! We are looking forward to that! :)

I am also working to raise awareness of Hirschsprungs Disease, and am going to be looking into some fundraising to help find a cure. :)

Well, please keep checking back, I will keep updating as things happen. Thank you for following our story!

Post Op

Mateo had his surgery a day early. And boy did I get a scare. The surgery was allotted 2.5 hours, and Mateo didn't come out of surgery for 6.25 hours. Luckily, and thank goodness, there were no complications. No blood loss, he didn't lose any bowel. The surgery was a success. Mateo now has enough bowel to have the pull through procedure done at a later time, depending on if he has firmer output from his ostomy. :)
The only downfall to the surgery is that we still don't any answers as to why Mateo's bowel was distended. There were no adhesions or scar tissue... So there is a chance it could happen again, which would cause another surgery. We can only wait and see.
As for post op, all is going well. Mateo is passing gas and stooling from his ostomy. Tomorrow he will be taken off his epidural. He is done with iv antibiotics, and he is getting 20cc of formula per hour drip feed for 4 hours. If he tolerates it, he will be increased by 10ccs every 4 hours until we reach 60ccs an hour. And today he is also ok'd to have clear liquids by mouth!! YAY, will be be excited!!
He is making great progress toward coming home. Now is just the waiting game, to get him to tolerate feeds and then hopefully we can go home!!
I do want to take a second to say thank you to everyone who is following Mateo's adventure. Thank you for your well wishes, your support and most of all, your prayers!!
I also want to thank CMN- with out your support, my son wouldn't be here today!
Dr Wadie, you are AMAZING! Thank you for taking on Mateo's case and working so closely with us! You are literally a LIFE SAVER!
And to the SHMC-Riverbend PEDS staff, thank you for taking such good care of Mateo! We do appreciate it!

doing some serious time

Wow. So antibiotics aren't helping Mateo's situation right now. He has had very loose stool, which caused him to become dehydrated again. He hasn't been urinating and isn't interested in eating. So we called Dr Wadie.
We came to the hospital last night and he was admitted. Dr Wadie moved his surgery up from Thursday to Wednesday. So we will be here for a while.
We are still looking at the same surgery, just moved up a day. And I guess now, they are looking into giving Mateo an epidural for pain management after the surgery. Anestesia (SP) is supposed to come talk to me today about doing this.
As always, prayers are much appreciated.
Please keep watching for updates here as well as on Facebook.

Surgery

I wanted to leave a few tidbits for anyone interested in what Mateo's surgery might entail. First off, he will have a central line placed as an IV. This is surgically placed in his chest, to avoid having to poke him several times to keep TPN going... TPN is Total Perenteral Nutrition. It takes the place of food while his bowels heal from surgery. Then Dr Wadie will do an exploratory surgery to figure out where the distended (swollen) bowel is at. If it is in the distal bowel (the lower end), that would be the best case scenerio. He could just remove this section of intestine, as it is not functioning anyways, due to the lack of ganglion cells due to Hirschsprungs Disease. If it is in the upper portion of his bowel, Dr Wadie will do what is called the STEP Procedure, which will narrow and lengthen this distended portion. This could be beneficiary to Mateo because it will help bacterial overgrowth and also give him more length of bowel to absorb more nutrients and have firmer stool.
Here is a link to see a little bit of info on the step procedure.
http://www.childrenshospital.org/cfapps/step/index.cfm

Mateo's surgery is scheduled for October 7th at Riverbend. We are looking at around a week of hospitalization... Please keep those prayers and well wishes coming!

COMPLICATIONS

We have had quite a bumpy road the last six months or so. Mateo has repeatedly been hospitalized for dehydration caused by diarrhea. He had an upper Gi done, which showed a large portion of bowel being quite distended. Dr Wadie ordered a barium enema to see exactly where the problem lies. This test came back showing that it is indeed his small intestine that is swollen. Since this has been an ongoing problem, it has been decided that surgery is our only option.
We are currently in Peds at SHMC at Riverbend and have been since Monday. He is on IV fluids and antibiotics for dehydration caused by diarrhea caused by bacterial overgrowth due to the distended bowel.

His upcoming surgery is scheduled for Thursday Oct 7th. It will be exploratory, to find out if the distended bowel is on top of his stoma or below. If it is below, this would be great! Dr Wadie will just remove this portion of intestine, and we will be good to go. If it is above, Dr Wadie will do what is called the STEP procedure (google it- great info) to narrow and lengthen his bowel, which will cause more absorption of nutrients, more formed stool, and less bacterial overgrowth. ALL GOOD STUFF FOR MATEO! He will also remove the intestine that Mateo is not using, which is approx 24 cm and his entire colon.

As we take our next journey, we do ask our family and friends to send some prayers for us! This will be a difficult time for us, especially for Mateo!

I will post more and keep everyone updated as I learn more.

2nd hosptialization in 2 weeks

So, about a week after we got discharged from the hospital for gastroenteritis, Mateo started having the same symptoms. He wasn't eating, he wasn't having bowel movements, and started vomiting. I called his surgeon who said I could keep him at home and hydrate him with pedialyte, or bring him in. I was worried, so I took him in to the ER. He was admitted. The surgeon was stumped as to why he would have another case of the gastroenteritus so close to the last one, and being on antibiotics. So, Mateo was NPO-no food by mouth, no food at all, actually. They let his bowel rest, and he began to have some output from his ileostomy. This ruled out a blockage. They suspected a partial blockage, which could still be a possibility. After several blood tests, X rays, urine samples, and 5 days in Peds, they said it was a urinary tract infection that spread to his bowel. He was put on 2 different kinds of antibiotics. We have been home for a little over 2 weeks now, and so far so good. We haven't had anymore complications. Thank GOODNESS!
We did have a check up at Doernbecher on March 29th with his Gastroenterologist, and she said all looks well, and we are shortening his time on his Gtube at night, and we are backing off adding sodium to his formula. Things are going smooth. The only negative thing she had to say was that Mateo had lost about 2lbs, which was from being sick. So, we are in the process of trying to "fatten" him back up!
I am so glad to be home and hope that we don't have any more hospital stays for a while!

In the hospital

We are in the hosptial. We came to the ER because Mateo hadn't had a bowel movement in about 12+ hours, and was vomiting. I was worried about a blockage, so I called his surgeon who told me to get to the hospital. After being here since 7am Friday morning, we've had x rays, blood tests, the works, and it doesn't seem to be a blockage. They are assuming he as an infection of the bowel. He is currently on IV fluids ONLY, and receiving antibiotics.
It is SO HARD to listen to your baby cry with hunger and not be able to do a thing about it. I can feel and almost hear my heart breaking.
I'm not sure how long we will be here, we did x rays again this morning, and we are waiting for the results. He has since had a bowel movement and is passing gas, so things are looking up!! His surgeon is going to let us do drip feedings through the Gtube here shortly, that should make Mateo feel a little bit better.
Please send some prayers for us!

tired times

I want to share my experiences, so that other mom's like me, know that it isn't 'just them'.

Lately, Mateo has been having problems with his GT site, it has been red, and growing granulation tissue around it, which means a trip to the doctor, and a prescription for silver nitrate, which entails me, putting my son through physical pain and literally BURNING the tissue off of him. I HATE IT! It breaks my heart.

And on top of that, we haven't been able to find a pouch that works for his ileostomy. He is needing to be changed EVERY day, sometimes more. His skin around his stoma gets irritated and burnt from his stool, and I keep taking him in, but nothing fixes the problem.

It is so frustrating! All I can do is keep trying. TRIAL AND ERROR. But it gets hard to stay positive after a while. I have said so many prayers, tried so many things.... I wish it were easier!!

Diagnosed with HD

After Mateo was born, I was having a hard time getting him to latch. He wouldn't eat. Then he began to vomit yellowish liquid (bile). The nurses said this was common, that he had swallowed amniotic fluid. Hours later, Mateo had not had a bowel movement. Nurses also said this was normal and gave him a suppository-to no avail. They tried syringe feeding him a sugar water, which caused him to vomit more. I kept insisting that something was wrong with my baby, but I kept hearing "it's normal". Once the pediatrician came in to do his exam (the NEXT day) I told him what was going on. He ordered xrays. Mateo's bowel was so big, they were worried that it might burst. Mateo was taken in the neonatal ambulance to a larger hospital in our area for surgery.

We met with the surgeon, Dr. George Wadie, who told us that he had a few things in mind. He said that it could be as simple as a meconium plug, which is when the first black, tarry stool is too thick to pass and it backs up. It is treated by simply going in and cleaning out the intestine. Another possibility is that he could have a disorder that would require surgery. He would do an exploritory surgery and give us more detail then.

Mateo went in for the procedure, and we were told that it was NOT a meconium plug. They wanted to do a rectal biopsy to check for ganglion cells. So, Mateo goes in for the biopsy, and gets an ileostomy. An Ileostomy is where they cut his small intestine, seal one end, and bring the other to the surface of his belly, so he can pass stool. When the biopsy results came back, it wasn't good news. Mateo lacks ganglion cells in his colon and part of his small intestine. He was diagnosed with Hirschsprungs Disease.

After having the ileostomy, Mateo still was not able to pass stool. He had to go in to have his ileostomy revised, because the lack of ganglion cells was more extensive than first thought. From this point, Mateo had a central line IV for nutrition, an NG tube, tubing down his nose to his belly to remove bile and let his bowel heal. This was eventually used for drip feedings and was replaced with a G-Tube- a mic key button system.

Mateo lived in the NICU from Oct 21 08 until Dec 31 08. He was kept for observation, most kids with such a severe case of HD have problems gaining weight, since they have a hard time absorbing nutrients with such a small section of working bowel.

Mateo was tried on my breast milk, which he couldn't break down, and was tried on several formulas. The one that worked is called Neocate Infant, which he is still using today.

As of today, Mateo is 16 months old. He still has an ileostomy. He also has his mic key button feeding tube, but as done so well with feedings and weight gain, he only has to be connected to it at night. :) He is still on formula, and his diet is trial and error. Dairy, sugars, eggs, and greasy/fatty foods are NO NO's for him. But he is a happy go lucky little man for all he has been through. He continues to thrive and grow!

As for the future and what it holds for Mateo, it is up in the air. We see pediatricians, his surgeon, a gastroenterologist at Doernbecher Children's hospital in Portland, as well as Ostomy specialists. We are at doctors appointments one a month at least.

The last I was told is that Mateo will need a "lengthening procedure" which means that his surgeon will go in, and cut his small intestine-like an accordian. But this has to be done when he's a little bigger, so his intestine will be larger in diameter. From there, we let him heal, then do the "pull through". They want to start this process when he is of potty training age, and is able to pee in the toilet.

So for know, we are playing the waiting game.

Birth

Mateo was a planned pregnancy, and I had a due date of Oct 17th 2008. I had all the prenatal care, and I was taking pre natal vitamins before I conceived. We went to a genetic specialist for ultrasounds- to be sure all was well with the pregnancy. I was told that everything was fine and he was healthy. I went into Labor on Sunday Oct 19th. The contractions woke me from my sleep. I labored at home all day, until my husband Carlos got to axious and forced me to the hospital. :) I stayed the night at the hospital, and after hours and hours of labor and an epedural we were having a baby! Hours of pushing and my OB realized Mateo was "sunny side up" and wanted to take him C- Section. I was intent on having a vaginal birth. We ended up having to use the "vacuum". On the 2nd try, Mateo was born! He had a temporary "cone head", one strong set of lungs LOL, 1o fingers and 10 toes. He looked perfect. Doctors told me I gave birth to a happy healthy little boy!