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!

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...

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.