Just a little Update.

Matthew had is 2nd Remicade treatment on Jan. 18th. I know I am a little behind.  It went fairly well.  They needed to do another blood test to see if all the vaccines he got when he was a baby were still working.  With a lower immune system sometimes they stop working.  So when they put in the IV they took blood out of that first, 1 poke= happy Matthew(kind of).  He was really worked up and we had to hold him down, give him a break and then hold him down again.  When they were taking the blood he bled a lot.  Then through the whole treatment he was kind of bleeding back out of the port, which is normal I guess when they hit a really good vein.  He had some snacks, watched movies and played on the IPad again.  When they took out the IV he bled alot again.  She thought she had it stopped, put the band-aid on and left the room.  Matthew got up to get his shoes on and started bleeding all over.  I sat him down and gave him paper towels while I ran to get the nurse.  I hit the button but she was in another room.  She ran in and helped him hold pressure on it and finally got it to stop.  She said when he stood his blood pressure changed enough to make it bleed again.  I guess the vein they got this time was really good she said.

His blood test came back saying that all but his Hep B is working.  So She said once he is off the prednisone then he will have to get the 3 part shot series again.  I have not told him this because he is not going to be happy about it. :) 

Other then that everything is going great.  He is feeling better almost all the time.  He took his last prednisone yesterday, so hopefully his eating will slow down a little.  He is gaining weight and getting chubby cheeks!  He has a huge attitude right now, but that is most likely from the prednisone too.  So hopefully that will stop too!

On March 2, there is a Crohns and Colitis Foundation Conference in the cities.  It consists of a whole day learning about new things dealing with crohns and colitis. There is a bunch of different sessions we can attend.  Matthew's Doctor, Dr. Tung will be speaking there.  So we are hopefully going to be attending this year. 

And Don't forget!!! To swing byhttp://online.ccfa.org/site/TR/2013TakeStepsWalk/Chapter-MinnesotaDakotas?team_id=121443&pg=team&fr_id=3903 To sponsor Matthew in the Walk!!!  His goal is to hit $100 under his name so he can get a T-shirt!  He is at $65 right now!!!  We have also make some T-shirts for us to wear that day, if you would like one let me know!  They are $10.80 each!

And the Doctor says...

Last night after the last update Matthew ended up having a really bad night.  He went to bed with a really bad tummy ache.  I woke up to Ryan helping Matthew get cleaned up.  Ryan woke up to Matthew moaning, only to find out he got sick all over his bed while sleeping.  Ryan went in to check on him and he was sound a sleep.  So he woke him up and cleaned him up and brought him to me.  We were worried because Matthew didn't even know he go sick until Ryan woke him up and told him.  So then Matt was sleeping with us and woke up crying because he needed to go to the bathroom.  Ryan picked him up and rushed him in only to find out that he had an accident in our bed. :( Bed 2 clean-up then took place.  So I kept him home today to see how he was and to get a hold of Matt's doctor. 

 

Well I talked to Dr. Tung and the IBD nurse Jessica.  They are going to do some more stool samples and blood work.  The blood work will come on the day of his infusion.  They will poke him for the treatment, take the blood, then flush and hook up the IV.  One poke = happy Matthew.  Another test came back from the EGD.  Matthew is in fact Lactose intolerant.  So back to the lactaid milk and Lactose pills.  They are also prescribing omeprazole too.  So I guess for now we will just see how the new (added) meds go.  We are still on for Friday Remicade so we will see how it goes after that.

 

Thanks for all the well wishes on Facebook.  We really appreciate it!

Not feeling so well...

Poor Matthew isn't feeling well tonight.  He went to bed early with a really bad tummy ache and ended up getting back up about an hour later to go to the bathroom.  He is still having diarrhea and now has started to have accidents at school again.  Both Diarrhea and Urine. He also has been burping like crazy and they smell really bad. I feel so bad for him and I am not sure what to do.  I have a email in to the nurses.  That is the way we send them questions now, I guess.  Its new to the department so I figured I would try it.  So I guess we will see what the next few days brings.  He has his next infusion and blood tests on Friday Jan. 18th at 9:00AM.

Take Steps Be Heard

Here is the Link to our Matthew's Monsters team for the Take Steps walk!!!  Please join and or Donate to our team to help fight Crohn's and Colitis!



http://online.ccfa.org/site/TR/2013TakeStepsWalk/Chapter-MinnesotaDakotas?team_id=121443&pg=team&fr_id=3903

So far so good!

Matthew's first Remicade treatment went pretty good.  When we got there our nurse, Amy showed us around, where the snacks and drinks are, the toys and book, and told us we could use an Ipad or computers and such if we wanted to, and that we had the movie channel on the TV!He had a pudding and Root beer while taking his Tylenol and benadryl that they give them before the remicade. The IV team got there and that was the hardest part.  Ryan, Amy and I were holding him and talking to him as one IV tech held his arm and the other tried to get it in.  It didn't go so well, the techs had to switch spots and try a second time.  That time he got it.   The next few minutes consisted of getting things ready and Amy trying to explain things to us.  Matthew got sick of listening and waiting and asked her "can we just cut to the chase?"  We all thought that was funny and totally forgot what we were talking about.  Ryan stayed for about an hour of the treatment.  Every 15 minutes they had to ramp up the dose. After the first hour of that they ramp it up bigger and let it go for 30 minutes.  That didn't go so well.  Matthew got a really bad stomach ache and started to sweat and get a headache.  Amy slowed it back down for a while and then he took a nap and felt much better.  We got done at about 12:45 with everything.  He started to feel good pretty much right away.  He was a little tired the rest of the day but did great.  We had an appointment in Endocrinology after the treatment.  There we met with 2 doctors to make sure he is growing OK.  He is in the 10th percentile for height right now but with the meds they hope that will speed back up.  His bone density looked right on track.  They say it can get really bad with crohn's.  His bones are "aged" at 7 years!  So that is great!  

So far since the treatment Matthew has not stopped eating!  He is feeling awesome and diarrhea has slowed down for now!  He has had solid stools for the last day and 1/2!  We meet with his GI team, Dr Tung and her nurses, along with the dietitian on Monday! 

Today is the day!

Today Matthew starts his official treatment. We start out at the Mayo building at 8:00AM for more blood tests, I guess, I just looked to check times on everything else and we had another appointment added. How nice! At 9:00am we have an appointment at St. Mary's in the Infusion Therapy Center(ITC).  They say that will last about 3 hours.  They have given us a prescription for EMLA cream to numb his arms a little.  We are not quite sure what to expect.  I think I am more nervous about it then anyone else. After ITC we go back to the Mayo building for an appointment with the Division of Pediatric Endocrinology.  The Endocrinology dept. will watch him closely through all of this to make sure he is growing they way that he needs to be.  We took some X-rays of his growth plate in his hand for that last weekend.  Not sure if they are doing anything else at this point or not.  So for now please just keep Matthew and the rest of us in your thoughts!