Well here is the most recent update I have on Mateo. We saw Dr Zallen, peds surgeon yesterday. He spoke with Dr Muir ( new Gastroenterologist) who found the cause of Mateo's bleeding and they made a plan.
With in the next couple weeks, we will drive to Doernbecher where Mateo will have yet another endoscopy, and Dr Muir will inject dye where the staples are that are causing Mateo trouble. We will then drive home and the following day Mateo will go in for surgery. This will be hard on us, since we will spend the day at Doernbecher, and then drive home, all the while Mateo will be on clear liquids ONLY to prepare for surgery. I hate when he can't eat. It literally breaks my heart. He is still young enough that he doesn't quite understand why he is hungry and no one will give him anything to eat. He gets upset, sad, and then angry. It's so hard to see him like that and not be able to do anything to help.
Dr Zallen said that he cannot do this laproscopically, which I am pretty bummed and upset about. Laproscopic surgery is easier on the body, the recovery time is less and there is obviously less scarring. In this case, He said he will have to make a new incision, and it will be a vertical one next to his belly button. The plan is for him to open Mateo up, pull his intestine out, find the dye spots ( staples/ulcer) and either revise or remove them depending on what he sees. He said recovery can be from 3-5 days on average. So we are looking at around a week in the hospital. :(
I received a 'MyChart" message from Doernbecher saying we have an appt scheduled with the peds gastro on the 14th of August, so I'm assuming that is the day the scope will be done and then the 15th will be surgery day...
My anxiety is through the roof. Mateo hasn't had surgery for a couple years now. He is older and wiser. I am worried at how he will handle it. I'm anxious about recovery. I'm worried that something could go wrong. There are so many "what ifs". I swear that when you have a child with a 'disease", it NEVER gets easier, even though some may think that it would or should. You learn to live with the day to day stuff... the meds, the appointments, the procedures, being so called "different". But when you put your child's life in the hands of a surgeon, friends, it does NOT get any easier.
I am going to call the church and request blessings all around. I want Mateo blessed before surgery and I need a blessing of comfort. The waiting is torchure and The day of is going to be hard on us all.
Please keep Mateo, our family and the medical staff in your prayers as we head on this next adventure.
I will post more updates as I get more information.
Friday, August 2, 2013
Thursday, July 18, 2013
Finally some Answers!
So, here we are, 2 nights and 3 days into another admission to Doernbecher. Mateo was passing blood from his ostomy and complaining of tummy pain. We went to the ER to have labs done, when Dr Muir got the results she wanted us up here asap. Mateo's hemacrite and iron levels were low due to blood loss.
we came up, got an Ng tube and an IV. They took labs again and ran fluids along with golitely, a solution to clean out his intestine. The following morning we headed to the OR for an endoscopy. Dr Muir did it herself and found the issue! YAY for answers, boo for the solution. It is a staple from his last surgery that is poking out causing an ulcer. Mateo will need surgery to fix it.
Right now he has been on IV infusions of iron to raise his blood counts. We are set to go home tonight with iron supplements and a plan to follow up in 2 weeks as well as to make an appt with the surgeon (Dr Zallen). We also have to get labs done on Mon or Tues to check his levels.
Sadly, I just emptied Mateo's pouch and he's started to pass blood again. Im hoping & praying we can still go home and get care at Sacred Heart if needed. Its hard on us both to be so far from home and away from family, especially Aneli!!
we came up, got an Ng tube and an IV. They took labs again and ran fluids along with golitely, a solution to clean out his intestine. The following morning we headed to the OR for an endoscopy. Dr Muir did it herself and found the issue! YAY for answers, boo for the solution. It is a staple from his last surgery that is poking out causing an ulcer. Mateo will need surgery to fix it.
Right now he has been on IV infusions of iron to raise his blood counts. We are set to go home tonight with iron supplements and a plan to follow up in 2 weeks as well as to make an appt with the surgeon (Dr Zallen). We also have to get labs done on Mon or Tues to check his levels.
Sadly, I just emptied Mateo's pouch and he's started to pass blood again. Im hoping & praying we can still go home and get care at Sacred Heart if needed. Its hard on us both to be so far from home and away from family, especially Aneli!!
Wednesday, June 26, 2013
GOINGS ON
In lieu of Mateo's EOE diagnosis, he had blood allergy testing, which came back negative for everything except milk, which was a SMALL positive. Since diagnosis, he has been dairy and soy free, which is difficult. Recently he had skin prick allergy testing done, that came back NEGATIVE FOR ALL FOODS. YAY, right? Well, sort of. YAY that he is not allergic, and yay that the doc has let us reintroduce soy. ( we are still dairy free for now). But BOOOOO for not knowing what is causing his esophagitis. It could be environmental.
We see the gastro in August, from there we will schedule a scope and see if there has been any changes to the esophagus. Then, we will go from there on what to test/look for next.
Other than that, he is doing quite well besides being gassy, which is to be expected since he was on a course of AB's for Pneumonia... He is doing much better now!
I also want to share a poem I stole from one of my miracle mom friends... IF you've ever read "Welcome to Holland", this is BETTER!
Its Not Holland
We see the gastro in August, from there we will schedule a scope and see if there has been any changes to the esophagus. Then, we will go from there on what to test/look for next.
Other than that, he is doing quite well besides being gassy, which is to be expected since he was on a course of AB's for Pneumonia... He is doing much better now!
I also want to share a poem I stole from one of my miracle mom friends... IF you've ever read "Welcome to Holland", this is BETTER!
Its Not Holland
Why having a child with a disability is not like being sent to Holland.
This parable bothers me. It bothers me a lot. While it is certainly uplifting, it makes me uncomfortable, because it denies a central and in my mind, undeniable fact about the experiences parents of children with life altering difficulties face: It is much harder and more difficult to parent a child with a disability than it is to parent a neurotypical child with no health challenges.
In my mind, a more accurate analogy would be this:
Imagine planning a trip to Paris for you and your partner. You get your guidebooks, your luggage, your wardrobe and your plane tickets. You research everything about Paris so you'll be ready when you arrive. You make make reservations. You talk with friends and family about their wonderful trips to Paris and how much fun they had. The two of you talk everyday about how much you want to go to Paris and how amazing it's going to be when you get there.
You get on the plane and take off. Suddenly, without explanation, the plane is diverted. Then at 5000 ft you and your partner are yanked out of your seats, strapped into parachutes you only vaguely understand, and tossed out the door.
Some how you manage to make it to the ground.
At first, you just sit, clinging to one another, checking to see if you have any broken bones. Once you're done thanking god that you're still alive, you dust yourselves off and look at the terrain. You look at each other and reassure one another that you're going to get out of this place.
Your first few days in the desert are exhausting. Just getting your basic needs met feels overwhelming. You feel alone, terrified and honestly- You're not sure if you're going to make it. Sometimes you fight, not because either of you is doing anything wrong- but because you're both tired and frustrated, there is sand everywhere, not enough water and there is no one else to yell at.
After many days of struggle, you finally make it to a village. The first thing you find out when you arrive, is that this settlement is made up of people who also got dumped out of a plane. This is what they tell you:
We are on the moon!
No, this is Arizona.
No, we're in the Australian Outback!
It's the airlines fault.
No. It's the flight attendant who pushed us out.
Oh! Another passenger pushed me out. How did that crazy person get past TSA?
There is no hope of rescue.
Wait! There is a rescue effort underway.
There is an 80% chance you and your treasured partner are going to crumble under the strain of this experience.
No, you won't, this experience will make you stronger!
The desert is a gift!
No, it's not. It's a war and war is hell!
Trying to make sense of this, you look around and say, "How did this happen? What made our plane go off track, when all the other planes made it to their destination just fine? If only we'd flown on a different airline. Who is right? Are we going to end up divorced or not? Is there a rescue party coming? Why are all of you talking at once?
Everyone in the crowd starts to shout LOUDER. Their voices jumbling into a unintelligible cacophony . Then, it dawns on you that maybe there are no right answers, because no one really knows. This is more terrifying than any answer you could have heard.
So despite being overwhelmed, despite struggling for the basic necessities and despite not knowing how you got there, you get on with the business of living your life. It's hard. It makes you angry, not at anyone in particular, just angry because it wasn't supposed to be this way. There are moments when the absurdity of it all makes you laugh. You and your partner discover that there are gorgeous sunsets in the desert and here, the stars shine with crystalline clarity. You smile a little more often and you realize that going to get water every day is doable once you know where the water hole is. You're scared sometimes, yes, but not as often as when you first landed. There are days when you wake up and wonder how you are ever going to make it through. At times, you're lonely for all the friends you had who went to Paris. Sometimes you don't recognize this person you're becoming or the person your partner has transformed into.
The desert is your new normal and once it becomes familiar, it's more understandable. You know which plants are poisonous, how to get sand out of your sleeping bag and how to be patient when your partner is screaming "ALL I EVER WANTED WAS A CROISSANT!" The path to the water hole is well worn. You learn how to handle your own meltdowns and you figure out that there are some wonderful people here in the village. Your skin gets toughened by the sun, and you realize you don't need Starbucks to get through the day.
Sometimes at the end of the day, as you gaze up at the endless sky, you wonder, "What would Paris have been like?" But then you realize that the desert has become your home- and you wouldn't give it up for the world.
This parable bothers me. It bothers me a lot. While it is certainly uplifting, it makes me uncomfortable, because it denies a central and in my mind, undeniable fact about the experiences parents of children with life altering difficulties face: It is much harder and more difficult to parent a child with a disability than it is to parent a neurotypical child with no health challenges.
In my mind, a more accurate analogy would be this:
Imagine planning a trip to Paris for you and your partner. You get your guidebooks, your luggage, your wardrobe and your plane tickets. You research everything about Paris so you'll be ready when you arrive. You make make reservations. You talk with friends and family about their wonderful trips to Paris and how much fun they had. The two of you talk everyday about how much you want to go to Paris and how amazing it's going to be when you get there.
You get on the plane and take off. Suddenly, without explanation, the plane is diverted. Then at 5000 ft you and your partner are yanked out of your seats, strapped into parachutes you only vaguely understand, and tossed out the door.
Some how you manage to make it to the ground.
At first, you just sit, clinging to one another, checking to see if you have any broken bones. Once you're done thanking god that you're still alive, you dust yourselves off and look at the terrain. You look at each other and reassure one another that you're going to get out of this place.
Your first few days in the desert are exhausting. Just getting your basic needs met feels overwhelming. You feel alone, terrified and honestly- You're not sure if you're going to make it. Sometimes you fight, not because either of you is doing anything wrong- but because you're both tired and frustrated, there is sand everywhere, not enough water and there is no one else to yell at.
After many days of struggle, you finally make it to a village. The first thing you find out when you arrive, is that this settlement is made up of people who also got dumped out of a plane. This is what they tell you:
We are on the moon!
No, this is Arizona.
No, we're in the Australian Outback!
It's the airlines fault.
No. It's the flight attendant who pushed us out.
Oh! Another passenger pushed me out. How did that crazy person get past TSA?
There is no hope of rescue.
Wait! There is a rescue effort underway.
There is an 80% chance you and your treasured partner are going to crumble under the strain of this experience.
No, you won't, this experience will make you stronger!
The desert is a gift!
No, it's not. It's a war and war is hell!
Trying to make sense of this, you look around and say, "How did this happen? What made our plane go off track, when all the other planes made it to their destination just fine? If only we'd flown on a different airline. Who is right? Are we going to end up divorced or not? Is there a rescue party coming? Why are all of you talking at once?
Everyone in the crowd starts to shout LOUDER. Their voices jumbling into a unintelligible cacophony . Then, it dawns on you that maybe there are no right answers, because no one really knows. This is more terrifying than any answer you could have heard.
So despite being overwhelmed, despite struggling for the basic necessities and despite not knowing how you got there, you get on with the business of living your life. It's hard. It makes you angry, not at anyone in particular, just angry because it wasn't supposed to be this way. There are moments when the absurdity of it all makes you laugh. You and your partner discover that there are gorgeous sunsets in the desert and here, the stars shine with crystalline clarity. You smile a little more often and you realize that going to get water every day is doable once you know where the water hole is. You're scared sometimes, yes, but not as often as when you first landed. There are days when you wake up and wonder how you are ever going to make it through. At times, you're lonely for all the friends you had who went to Paris. Sometimes you don't recognize this person you're becoming or the person your partner has transformed into.
The desert is your new normal and once it becomes familiar, it's more understandable. You know which plants are poisonous, how to get sand out of your sleeping bag and how to be patient when your partner is screaming "ALL I EVER WANTED WAS A CROISSANT!" The path to the water hole is well worn. You learn how to handle your own meltdowns and you figure out that there are some wonderful people here in the village. Your skin gets toughened by the sun, and you realize you don't need Starbucks to get through the day.
Sometimes at the end of the day, as you gaze up at the endless sky, you wonder, "What would Paris have been like?" But then you realize that the desert has become your home- and you wouldn't give it up for the world.
Friday, May 24, 2013
2nd Hospital visit in 2 days/ Meeting the new Gastro
So, we went to the doctor Monday morning after Mother's Day, and Dr Wong took one look at Mateo and knew he needed fluids. So she admitted him to the PEDS unit at the hospital. The good thing is we got to bypass the ER and his IV was done by a PEDS nurse, he was only poked once. It was still frustrating since I had to call in sick to work, Mateo had to be poked AGAIN, and he had to sit in the hospital again. I think this should have been taken care of either in the ER or they should have just transferred us to PEDS like I had asked for.
But what do I know?
We spent the day in PEDS, where Mateo got IV fluids and had his labs drawn. His platelets were still low and his electrolytes were low. All the peds doc was worried about was getting him hydrated since we had a GI follow up scheduled for Thursday. We were discharged that evening and Mateo has been doing well since.
That same week, we had Mateo's GI follow up appt with his new Gastro, Dr Linda Muir. Our GI that has been with him since day one is retiring, so we decided to start with a new GI now, and get to know her, let her consult with Dr Terry before her retirement.
The appointment went great. She is a great person, I like her alot. She was personable and friendly. She was super impressed with Mateo and how well he is doing despite having TCHD, Short Bowel and EE. She said his growth is outstanding! I am proud of my boy and all that he has conquered.
Her plan is that she put him on meds for the EE, a steroid. It is to coat his esophagus and help with inflammation. She wants to see us back in 3 months ( around Aug) to check up on him, and at that point we will schedule his next endoscopy to follow up with his EE and see if it's getting better. IF it is getting better, we may be able to reintroduce soy into his diet. This would make life so much easier. Being sugar, dairy and soy free is extremely limiting!! I've had to completely change the way I shop and cook! But it's worth it for my son and his well being!!
But what do I know?
We spent the day in PEDS, where Mateo got IV fluids and had his labs drawn. His platelets were still low and his electrolytes were low. All the peds doc was worried about was getting him hydrated since we had a GI follow up scheduled for Thursday. We were discharged that evening and Mateo has been doing well since.
That same week, we had Mateo's GI follow up appt with his new Gastro, Dr Linda Muir. Our GI that has been with him since day one is retiring, so we decided to start with a new GI now, and get to know her, let her consult with Dr Terry before her retirement.
The appointment went great. She is a great person, I like her alot. She was personable and friendly. She was super impressed with Mateo and how well he is doing despite having TCHD, Short Bowel and EE. She said his growth is outstanding! I am proud of my boy and all that he has conquered.
Her plan is that she put him on meds for the EE, a steroid. It is to coat his esophagus and help with inflammation. She wants to see us back in 3 months ( around Aug) to check up on him, and at that point we will schedule his next endoscopy to follow up with his EE and see if it's getting better. IF it is getting better, we may be able to reintroduce soy into his diet. This would make life so much easier. Being sugar, dairy and soy free is extremely limiting!! I've had to completely change the way I shop and cook! But it's worth it for my son and his well being!!
Monday, May 13, 2013
Mothers day ER visit
Mothers day morning was typical, well typical for US. I was woke up at 6am because Mateo's bag was leaking. He was a HUGE mess. A huge, smelly mess. And to top if off, he was passing blood AGAIN. I get him in the bath and clean up his room. Realizing it's so early on a SUNDAY, we get in the car and head to the ER.
They got us back fairly quickly even though the bleeding had stopped, but now he was dumping. ( very high, pure liquid ostomy output). A nurse comes in and trys to get an IV started. She tries twice to no avail and calls another nurse. This nurse comes in and immediately looks irriated at Mateo because by this point he is a screaming, crying, sweaty mess. He doesn't feel good and he's not enjoying being poked and prodded. She gives it a whirl and of course ISN'T successful. I tell her I'd like a peds or nicu nurse and she gives it another go. While shes feeling for a vein, she raises her voice, literally yelling at my son saying "you NEED to stop!" She pushes the needle in and then tries to draw blood. It doesn't work and she tells Mateo "it was in, YOU pulled it out. See what YOU did?" Right there I asked her for a different nurse and told her I felt she had lost all patience with my son. She looks at me and in a scarcastic tone tells me, ' don't you worry, you're getting someone else." At this point, I'm FURIOUS and I'm crying. My son is crying. He's been poked 4 times now and still no IV fluids... I'm done. I press the call button and I ask for a supervisor. The Charge nurse comes in and asks me what is wrong. I asked her to be transferred to Peds or I'd like discharge papers. I told her what had happened and she kept insisting that I talk to the doctor. I told her I wasn't waiting and that I could probably make it to Doernbecher ( 2 hours North of here) before the doctor made it to our room. I was adamant on getting peds or we were leaving. She let me know they had already called Peds and a nurse was on her way down.
Sammy, one of our regular peds nurses came and saved the day. She greated Mateo and talked with him, let him know what she was doing step by step. He was still crying, but he was calmer. She got the IV on her first try, which was HIS 5th poke.
We stayed in the ER room while Mateo received a bolus of IV fluids, the charge nurse apologised profusely along with the Dr and another nurse that was assisting. After the fluids, the doctor said Mateo was good enough to go home.
We come home and Mateo is still dumping. He isn't interested in eating. I managed to bribe him with a burger from McDonalds, but that is ALL he has eaten since Saturday. It's now Monday morning. He is drinking and he will snack on pedialyte popsicles, but he is not peeing. He's peed once since Saturday night, and I'm afraid he's still dehydrated.
I called his primary physician and we have an appointment with her here in a couple hours. I am hoping we get him sorted out so he can feel better. He's tired and not himself. He slept from 7pm last night til 6ish this morning.
I am so upset at how the last couple days have gone... Mateo not feeling well, the experience at the ER, and them letting him leave when he's not fully hydrated... Me having to miss work and drive him to the doctor, and we'll probably end up back in the hospital... The only good is that we will bypass the ER this time...
I did call the hospital first thing this mornin and I filed a formal complaint. I don't think that nurse is qualified to be handling children.
They got us back fairly quickly even though the bleeding had stopped, but now he was dumping. ( very high, pure liquid ostomy output). A nurse comes in and trys to get an IV started. She tries twice to no avail and calls another nurse. This nurse comes in and immediately looks irriated at Mateo because by this point he is a screaming, crying, sweaty mess. He doesn't feel good and he's not enjoying being poked and prodded. She gives it a whirl and of course ISN'T successful. I tell her I'd like a peds or nicu nurse and she gives it another go. While shes feeling for a vein, she raises her voice, literally yelling at my son saying "you NEED to stop!" She pushes the needle in and then tries to draw blood. It doesn't work and she tells Mateo "it was in, YOU pulled it out. See what YOU did?" Right there I asked her for a different nurse and told her I felt she had lost all patience with my son. She looks at me and in a scarcastic tone tells me, ' don't you worry, you're getting someone else." At this point, I'm FURIOUS and I'm crying. My son is crying. He's been poked 4 times now and still no IV fluids... I'm done. I press the call button and I ask for a supervisor. The Charge nurse comes in and asks me what is wrong. I asked her to be transferred to Peds or I'd like discharge papers. I told her what had happened and she kept insisting that I talk to the doctor. I told her I wasn't waiting and that I could probably make it to Doernbecher ( 2 hours North of here) before the doctor made it to our room. I was adamant on getting peds or we were leaving. She let me know they had already called Peds and a nurse was on her way down.
Sammy, one of our regular peds nurses came and saved the day. She greated Mateo and talked with him, let him know what she was doing step by step. He was still crying, but he was calmer. She got the IV on her first try, which was HIS 5th poke.
We stayed in the ER room while Mateo received a bolus of IV fluids, the charge nurse apologised profusely along with the Dr and another nurse that was assisting. After the fluids, the doctor said Mateo was good enough to go home.
We come home and Mateo is still dumping. He isn't interested in eating. I managed to bribe him with a burger from McDonalds, but that is ALL he has eaten since Saturday. It's now Monday morning. He is drinking and he will snack on pedialyte popsicles, but he is not peeing. He's peed once since Saturday night, and I'm afraid he's still dehydrated.
I called his primary physician and we have an appointment with her here in a couple hours. I am hoping we get him sorted out so he can feel better. He's tired and not himself. He slept from 7pm last night til 6ish this morning.
I am so upset at how the last couple days have gone... Mateo not feeling well, the experience at the ER, and them letting him leave when he's not fully hydrated... Me having to miss work and drive him to the doctor, and we'll probably end up back in the hospital... The only good is that we will bypass the ER this time...
I did call the hospital first thing this mornin and I filed a formal complaint. I don't think that nurse is qualified to be handling children.
Thursday, April 11, 2013
Lots of questions, no answers
So,
Dr Terry ( gastro) called yesterday. ALL of Mateo's tests from his Doernbecher admission were normal. They have NO clue why he was stooling blood from his ostomy. Best guess is an ulcer on a suture line of his previous surgery. The problem with this is they haven't SEEN an ulcer. We can press forward and try other tests, but Dr Terry said that even IF they do find an ulcer, they won't do anything. It would require surgery to remove, and in Mateo's case, they really want to avoid surgery if at all possible. So she gave me the choice to either press forward or to wait and see.
This is hard on me, to make this decision. What if this... what if that... Why make him suffer more, endure more... But we NEED answers... My decision came down to this. If it was something serious or dangerous, the other tests would have dianosed it. I don't want to put him through more trauma. So I am going to stop testing and let him be. He hasn't lost enough blood for it to be dangerous or to cause any issues.
The plan from here is to watch him at home and if he passes blood again to let Dr Terry know, and if it's worse or more than previous to take him to the hospital here to be evaluated and IF needed he can be transported to Doernbecher.
He is being referred to an allergist for skin testing for his Eosinophilic Esophagitis, and we have a follow up with his soon to be NEW gastro, Dr Muir. Dr Terry who has been with us since day 1 is retiring. :( The good news is Dr Terry chose Dr Muir for us and she comes down here to Springfield! Our follow up is next month here at Sacred Heart Medical Center at Riverbend! So we don't have to drive clear to Portland!!
Mateo has been doing well since his discharge and we will take it day by day!
Dr Terry ( gastro) called yesterday. ALL of Mateo's tests from his Doernbecher admission were normal. They have NO clue why he was stooling blood from his ostomy. Best guess is an ulcer on a suture line of his previous surgery. The problem with this is they haven't SEEN an ulcer. We can press forward and try other tests, but Dr Terry said that even IF they do find an ulcer, they won't do anything. It would require surgery to remove, and in Mateo's case, they really want to avoid surgery if at all possible. So she gave me the choice to either press forward or to wait and see.
This is hard on me, to make this decision. What if this... what if that... Why make him suffer more, endure more... But we NEED answers... My decision came down to this. If it was something serious or dangerous, the other tests would have dianosed it. I don't want to put him through more trauma. So I am going to stop testing and let him be. He hasn't lost enough blood for it to be dangerous or to cause any issues.
The plan from here is to watch him at home and if he passes blood again to let Dr Terry know, and if it's worse or more than previous to take him to the hospital here to be evaluated and IF needed he can be transported to Doernbecher.
He is being referred to an allergist for skin testing for his Eosinophilic Esophagitis, and we have a follow up with his soon to be NEW gastro, Dr Muir. Dr Terry who has been with us since day 1 is retiring. :( The good news is Dr Terry chose Dr Muir for us and she comes down here to Springfield! Our follow up is next month here at Sacred Heart Medical Center at Riverbend! So we don't have to drive clear to Portland!!
Mateo has been doing well since his discharge and we will take it day by day!
Friday, April 5, 2013
Day 3 @ Doernbecher
Its Friday. Day 3 of admission, 3rd day of not seeing my sweet baby girl, 3 missed days of work, and the last few days of Mateo's spring break. I am really missing home, my daughter, and I feel bad for having to miss work. But I know this is where we need to be to get Mateo sorted. We need to figure out why he stools blood.
Mateo had dinner last night and went npo again from midnight on. Its now a little after 1130am and he's been asking for food since he woke up. We've been playing Xbox 360 and frequenting the playroom quite often to distract him. We've walked the halls.
Just a bit ago radiology came for us and we went down for his Upper GI. He cried the whole way there. I think he's tired of tests, poking and prodding... He refused to drink the barium, we tried strawberry and chocolate flavors. They ended up sucking it into a bulb syringe and squirting it in his mouth. It took me and 2 others to hold him down. Once that was over, the xrays were a breeze! He was awarded a can of playdoh and some angry bird stickers. We are now back in our room, the xray tech comes every half hour to take more pics... Hopefully he'll be able to eat soon, mamas hungry too!!
I asked how long we'll be here and noone seems to know... Im hoping today so we can still go to the coast tomorrow! But who knows!
Mateo is doing quite well and is in good spirits. I hope they get us some answers soon!
Mateo had dinner last night and went npo again from midnight on. Its now a little after 1130am and he's been asking for food since he woke up. We've been playing Xbox 360 and frequenting the playroom quite often to distract him. We've walked the halls.
Just a bit ago radiology came for us and we went down for his Upper GI. He cried the whole way there. I think he's tired of tests, poking and prodding... He refused to drink the barium, we tried strawberry and chocolate flavors. They ended up sucking it into a bulb syringe and squirting it in his mouth. It took me and 2 others to hold him down. Once that was over, the xrays were a breeze! He was awarded a can of playdoh and some angry bird stickers. We are now back in our room, the xray tech comes every half hour to take more pics... Hopefully he'll be able to eat soon, mamas hungry too!!
I asked how long we'll be here and noone seems to know... Im hoping today so we can still go to the coast tomorrow! But who knows!
Mateo is doing quite well and is in good spirits. I hope they get us some answers soon!
Thursday, April 4, 2013
2nd Endoscopy
Welp, Mateo's hanging in there... He hasn't ate since dinner (his ONLY meal yesterday) and hez not happy about it. They kept him npo (nothing by mouth) for his endoscopy. It was supposed to be at 10am but ended up getting pushed back til 1 or a little after.
Everything went well, no complications. He still has eosinophils in his esophagus so they did another biopsy, but didn't find any bleeding or anything else concerning. While under, they removed his Ng tube.
We had a couple visitors today, Brynn and Sean! I was happy to see my bff, and Mateo got a huge lightening McQueen balloon and some propel! :)
He is no longer npo so he had some graham crackers and propel. We ordered some food and will be having our first meal of the day at 5pm!!
From here, the gastro wants to do an upper GI, meaning he'll go npo again and in the morning be will drink some dye and have xrays taken. Im a bit confused though cuz we just saw the dietician and she said we might get to go home tonight or tomorrow...
as for the dietician, we are going dairy AND soy free now. We'll see how he does with that once we are home...
We are hanging in there on day 2 of our stay. The mobile Xbox 360 has been my saving grace, haha!! It keeps him focused on something other than food or wanting to go home.
I'll be glad if we get to go home, so we can still make it to the coast this weekend...
Everything went well, no complications. He still has eosinophils in his esophagus so they did another biopsy, but didn't find any bleeding or anything else concerning. While under, they removed his Ng tube.
We had a couple visitors today, Brynn and Sean! I was happy to see my bff, and Mateo got a huge lightening McQueen balloon and some propel! :)
He is no longer npo so he had some graham crackers and propel. We ordered some food and will be having our first meal of the day at 5pm!!
From here, the gastro wants to do an upper GI, meaning he'll go npo again and in the morning be will drink some dye and have xrays taken. Im a bit confused though cuz we just saw the dietician and she said we might get to go home tonight or tomorrow...
as for the dietician, we are going dairy AND soy free now. We'll see how he does with that once we are home...
We are hanging in there on day 2 of our stay. The mobile Xbox 360 has been my saving grace, haha!! It keeps him focused on something other than food or wanting to go home.
I'll be glad if we get to go home, so we can still make it to the coast this weekend...
Doernbecher admission
Surprise!! Mateo started drooling blood from his ostomy again, so I called Dr Terry, Mateo's gastro. She scheduled us a. Appointment for Wed morning. We go to the appointment and she decides right away to admit him. So here we are, on the surgical unit on the 9th floor of Doernbecher Childens Hospital, miles and hours from home. Its hard on both of us being here. Normally I cope well with hospital stays but I've never felt so isolated. Being two hours from home, none of my family will make it up to visit... Im so glad my bff lives up here. She's hopefully visiting today!
Now that im done whining, back to Mateo. He got admitted and we had to wait for a room. Once in our room, they put an IV in and took blood. Then xrays were done. Late last night they placed an Ng tube, a small tube fed through his nose, down his throat and into his tummy. Then xrays were done to make sure the tube was placed correctly. Mateo had a really hard time with the tube. He fought it, cried, screamed, gagged, and threw up. It breaks my heart to watch him go through all this. I even had to sit down, I got light headed and dizzy. I can't imagine how he felt.
It was a very exhausting night, his tube was used to pump fluids directly to his stomach to clean out his digestive tract. This is in preparation for his endoscopy today. They need him cleared out to be able to see. The GI thinks he could have an ulcer on the suture line from his last surgery.
but back to the exhaustion- mateos ostomy needed emptied often, vitals, his IV beeping, equaled NO sleep. Im so tired, but he seems rearing to go! :)
its a waiting game now, for an or to do the scope. Then we wait for results and go from there. I'll post more when I get more information.
Now that im done whining, back to Mateo. He got admitted and we had to wait for a room. Once in our room, they put an IV in and took blood. Then xrays were done. Late last night they placed an Ng tube, a small tube fed through his nose, down his throat and into his tummy. Then xrays were done to make sure the tube was placed correctly. Mateo had a really hard time with the tube. He fought it, cried, screamed, gagged, and threw up. It breaks my heart to watch him go through all this. I even had to sit down, I got light headed and dizzy. I can't imagine how he felt.
It was a very exhausting night, his tube was used to pump fluids directly to his stomach to clean out his digestive tract. This is in preparation for his endoscopy today. They need him cleared out to be able to see. The GI thinks he could have an ulcer on the suture line from his last surgery.
but back to the exhaustion- mateos ostomy needed emptied often, vitals, his IV beeping, equaled NO sleep. Im so tired, but he seems rearing to go! :)
its a waiting game now, for an or to do the scope. Then we wait for results and go from there. I'll post more when I get more information.
Friday, March 29, 2013
CMN RADIOTHON- 3/8/13
This year, I was so sad that we "missed" radiothon. It is another yearly CMN even that we participate in. It is held at the hospital, where Mateo spent 71 days in the NICU, and where we frequent the pediatric unit. There are CMN reps, and radio personalities who spend 2 full days sharing what CMN is and what they do for families like ours. Miracle families stop in to visit, do live radio interviews, or record interviews to be played back on the radio. We have recorded interviews and every year we usually do a live one as well. I also like to give back by spending a few hours in the phone bank answering calls and taking donations.
Well this year, during the day off from work I took for Radiothon, we ended up at Doernbecher Childrens for Mateo's endoscopy. I was so sad that we couldn't help out this year, or even make an appearance. Well on the last day of radiothon, I was at work and the kids were with Aunt Tami.. She took them to the hospital, to Radiothon! Mateo made his appearance and even did his radio interview!! I am so thankful to my aunt for taking him, and for him for being do brave and sharin his story with out me!!
Well this year, during the day off from work I took for Radiothon, we ended up at Doernbecher Childrens for Mateo's endoscopy. I was so sad that we couldn't help out this year, or even make an appearance. Well on the last day of radiothon, I was at work and the kids were with Aunt Tami.. She took them to the hospital, to Radiothon! Mateo made his appearance and even did his radio interview!! I am so thankful to my aunt for taking him, and for him for being do brave and sharin his story with out me!!
Our new enemy, Mr. Milk
After getting Mateo's biopsy results and his EE dianosis,we were sent to the lab for a blood draw to check for food allergies. It's pretty sad when a 4 year old holds his arm out to be poked. He didnt even scream or freak out. He is getting used to it. :(
We waited close to a week and I got another mychart message from the GI,Dr. Terry. She said he only tested allergic to one thing, and it was indeed milk. I really was hoping, crossing fingers and toes, praying, begging for it to not be milk.
This is a HUGE change for us. He is very, EXTREMELY limited to what he can eat at restaurants now. And at home, I'm having to relearn to grocery shop, spending more money, and learning how to prepare meals for him. It breaks my heart that I have to limit him so much. But after researching, asking friends, shopping.. I have found some good stuff... So far I've made dairy free pancakes ( bisquick with egg and soy milk), got him dairy free bread, margarine, soy yogurt, vegan cheese, dairy free snacks... It's been crazy. He can't have simple things like a lunchable anymore. The meat, cheese and crackers ALL have dairy... Chips have milk in them... But tonight he was a happy camper. He made his very own pizza, gluten free/dairy free crust, vegan cheese and black olive. He ate half of the pizza.. And he said it was good! :) It's going to take us both some time, but we'll get it figured out!
The hardest thing for me is how I don't have complete control over Mateo's diet. He goes to my aunts house during the day while I work ( along with his sister Aneli). I worry that he might accidentally get given or fed something with Dairy. Or when he goes with grandma. Grandma's like to spoil their grandkids, and she has been known to sneak him some sugar once in a while... I wish everyone would take his conditions seriously. It' s not like we limit or restrict him for fun... It's for a purpose, his health!! It's frustrating when people give him things he's not supposed to have. Then he knows what he's missing, he expects it again, or worse, it causes issues with his health and/or comfort. Then it affects his sister and myself...
This diagnosis has really hit us all by suprise, and it's very stressful now. I look forward to the day that it just clicks, and we "get it". I remember the day I heard "hirschsprungs disease"... I thought we'd never be able to deal with it, and here we are! I know we can do this too,I just hope its smooth!
We waited close to a week and I got another mychart message from the GI,Dr. Terry. She said he only tested allergic to one thing, and it was indeed milk. I really was hoping, crossing fingers and toes, praying, begging for it to not be milk.
This is a HUGE change for us. He is very, EXTREMELY limited to what he can eat at restaurants now. And at home, I'm having to relearn to grocery shop, spending more money, and learning how to prepare meals for him. It breaks my heart that I have to limit him so much. But after researching, asking friends, shopping.. I have found some good stuff... So far I've made dairy free pancakes ( bisquick with egg and soy milk), got him dairy free bread, margarine, soy yogurt, vegan cheese, dairy free snacks... It's been crazy. He can't have simple things like a lunchable anymore. The meat, cheese and crackers ALL have dairy... Chips have milk in them... But tonight he was a happy camper. He made his very own pizza, gluten free/dairy free crust, vegan cheese and black olive. He ate half of the pizza.. And he said it was good! :) It's going to take us both some time, but we'll get it figured out!
The hardest thing for me is how I don't have complete control over Mateo's diet. He goes to my aunts house during the day while I work ( along with his sister Aneli). I worry that he might accidentally get given or fed something with Dairy. Or when he goes with grandma. Grandma's like to spoil their grandkids, and she has been known to sneak him some sugar once in a while... I wish everyone would take his conditions seriously. It' s not like we limit or restrict him for fun... It's for a purpose, his health!! It's frustrating when people give him things he's not supposed to have. Then he knows what he's missing, he expects it again, or worse, it causes issues with his health and/or comfort. Then it affects his sister and myself...
This diagnosis has really hit us all by suprise, and it's very stressful now. I look forward to the day that it just clicks, and we "get it". I remember the day I heard "hirschsprungs disease"... I thought we'd never be able to deal with it, and here we are! I know we can do this too,I just hope its smooth!
Wednesday, March 13, 2013
Biopsy Results
So, we got Mateo's endoscopy/biopsy results back. Here is the email I got via Mychart from his gastroenterologist, Dr. Annie Terry.
Hi Kayla-
Mateo's biopsies confirm that he has eosinophilic ( allergic) esophagitis. This problem is caused by a reaction to foods.Kids with this problem have reactions to foods that may only show up as inflammation in the esophagus. Some have symptoms that look like acid reflux.
Unfortunately, for many kids with this problem, the normal blood and skin tests for allergies are negative, making it difficult to find the food or foods that are the cause of the problem. In his case, I wonder whether it is the milk protein in his Pediasure Sidekicks. The treatment for this problem is to either eliminate the foods from the diet that are causing the problem or give a steroid medication by mouth to coat the esophagus. Many centers start by eliminating the 6 most common foods that cause these allergies-- milk, soy, egg, wheat, peanut, fish.
Since his bleeding problem seemed to start soon after adding the Pediasure, one option for Mateo would be to just remove dairy from his diet ( pediasure, milk, cheese, ice cream, yogurt) and let him drink regular Neocate again. I would suggest that we schedule another endoscopy in 6 weeks to see whether removing only dairy from his diet is enough to treat this problem.
Annie Terry
When I spoke to Dr Terry over the phone, she told me that this is a huge problem with kids with Short Bowel Syndrome, and Mateo's allergy is a good one, whatever it may be. She said they would normally see 15 cells in a slide, they saw over 100 in the areas on the bottom of the esophagus on Mateo's biopsy. She told me that we are still years away from an accurate test that would confirm if we had removed the right food(s) from his diet, so all we can do is a blood allergy test( which above she stated usually comes back negative), and start removing foods one by one. She is scheduling the blood tests and Doernbecher scheduling will be calling me to set up another endoscopy for 6 weeks out, to check and see if the esophagus looks any better.
I'm sensing a very long, stressful, frustrating road ahead...
Hi Kayla-
Mateo's biopsies confirm that he has eosinophilic ( allergic) esophagitis. This problem is caused by a reaction to foods.Kids with this problem have reactions to foods that may only show up as inflammation in the esophagus. Some have symptoms that look like acid reflux.
Unfortunately, for many kids with this problem, the normal blood and skin tests for allergies are negative, making it difficult to find the food or foods that are the cause of the problem. In his case, I wonder whether it is the milk protein in his Pediasure Sidekicks. The treatment for this problem is to either eliminate the foods from the diet that are causing the problem or give a steroid medication by mouth to coat the esophagus. Many centers start by eliminating the 6 most common foods that cause these allergies-- milk, soy, egg, wheat, peanut, fish.
Since his bleeding problem seemed to start soon after adding the Pediasure, one option for Mateo would be to just remove dairy from his diet ( pediasure, milk, cheese, ice cream, yogurt) and let him drink regular Neocate again. I would suggest that we schedule another endoscopy in 6 weeks to see whether removing only dairy from his diet is enough to treat this problem.
Annie Terry
When I spoke to Dr Terry over the phone, she told me that this is a huge problem with kids with Short Bowel Syndrome, and Mateo's allergy is a good one, whatever it may be. She said they would normally see 15 cells in a slide, they saw over 100 in the areas on the bottom of the esophagus on Mateo's biopsy. She told me that we are still years away from an accurate test that would confirm if we had removed the right food(s) from his diet, so all we can do is a blood allergy test( which above she stated usually comes back negative), and start removing foods one by one. She is scheduling the blood tests and Doernbecher scheduling will be calling me to set up another endoscopy for 6 weeks out, to check and see if the esophagus looks any better.
I'm sensing a very long, stressful, frustrating road ahead...
Monday, March 11, 2013
UofO Dance Marathon 2013
For the past few years Mateo being such a miracle and all, has participated in the Dance Marathon. It is held at the University of Oregon, and tons of college students and miracle families all get together and dance for 12 hours to benefit CMN.
Every year, we go as a family to show our support and to share Mateo's miracle story. We talk about my pregnancy, and how we thought everything was perfectly normal. Then we tell how Mateo was born, and diagnosed with Hirschsprungs Disease and Short Bowel Syndrome. We share our daily struggles and all the obstacles Mateo has overcome over the years.
This gives the people dancing more of a reason to keep dancing, and to keep fundraising for CMN, and it helps the people who donate to really see where and how the funds they give are being used. We are so very proud to be a part of Dance Marathon and we hope to go for many more years!!
I-5 N we go...
The other day, we were going about our normal routine to get ready for the day. Mateo's ostomy bag was leaking, so we did a change before we headed off to school. I get the new pouch on and Mateo says, " look mom, blood's coming out!". I look and much to my suprise, there is nothing but blood in his bag. Not a huge amount, but scary nonetheless. I call his pediatrician, who asks me to bring him in right away. I take him in and she doesn't know what to do. She makes a few calls ( one to our peds surgeon, and one to Mateo's gastroenterologist up at Doernbecher Childrens in Portland). She comes back in the room and says, " I hate to tell you this, but they want to see him in Portland." So, we get the call and make an appointment for the following day. We get up at 430am, pile in and head to the hospital. We see Dr. Terry, who does and external exam and says Mateo looks like he's lost a good amount of blood. She orders the dietian to come meet with us, and a blood draw. The labs came back good enough to send us home, but she wanted to do a scope to see what was causing the bleeding. We go home for 2 days, then it was back to Doernbecher. This time we see a different gastro, and it's in the surgery dept.
Mateo is put under, and a camera was put down his throat and one in his stoma. During the procedure, unknown to us, he had quit breathing twice and had to be intubated. Otherwise the endoscopy went well, we are still awaiting results. She did tell us that they found an "abnormality" in his esophagus that she biopsied. The bleeding has stopped, but we still don't know what caused it in the first place. So for now, we are taking it day by day and awaiting the results from the endoscopy, which should take about a week. Til then, we keep our fingers crossed and pray that it's nothing serious. 
CMNH Champion trip 2012
This trip was truly amazing, and Mateo still talks about it. But what he talks about most is the friendships he made on the trip! Mateo was surrounded by other champions who were different, but like him. He felt comfortable showing his "bolsa" and letting the kids know he has Hirschsprungs Disease. He misses his friends from the trip, and we hope to reunite with them this fall. :)
Friday, September 7, 2012
Sweet Words
It's morning time in the Guerrero household, and as part of my morning routine, I get on Facebook and see what's going on. Well I came across a poem that one of the other HD moms ( as I call them) had posted, and it was so sweet, that I HAVE to share it.
As much as we have been through with Mateo, the tears of joy, the tears of fear, the stressfull tears, the surgeries, the hospital stays, the at home procedures, etc. I would NOT trade him for the world. I love my son with all of my heart and soul, and NOTHING will ever change that. This poem struck home for me, so I would like to share it here on his blog.
As much as we have been through with Mateo, the tears of joy, the tears of fear, the stressfull tears, the surgeries, the hospital stays, the at home procedures, etc. I would NOT trade him for the world. I love my son with all of my heart and soul, and NOTHING will ever change that. This poem struck home for me, so I would like to share it here on his blog.
Monday, September 3, 2012
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!!
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!!
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!
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!
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.
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| Pre- op |
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| Post-op eating a popcicle and watching cartoons! |
Sunday, October 9, 2011
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".
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!
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