Friday, August 2, 2013

Surgery and anxiety. Not a good combo.

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.

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!!

Wednesday, June 26, 2013


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

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.

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!!

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.

Thursday, April 11, 2013

Lots of questions, no answers


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!