Thursday, December 30, 2010
Wednesday, December 29, 2010
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!!!
Tuesday, November 30, 2010
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!
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!
Tuesday, October 12, 2010
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!
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!
Tuesday, October 5, 2010
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.
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.
Wednesday, September 29, 2010
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!
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.
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