What a week

Well this week, Dec. 1st - 7th, is Crohn's and Colitis Awareness week.  So to make it even better Matthew started a small flare.  His Remicade was due last week but they were so busy we couldn't get it until yesterday.  On Saturday he wasn't feeling the greatest.  He started having diarrhea and lots of stomach pains.  It continued through Monday with some fatigue also. Ryan had to pick him up from school because he was in the nurses office sleeping. He was feeling so bad he didn't even want to go to cub scouts. Tuesday he did pretty good.  Made it through the day and had minimal pains.  I felt horrible.  I felt like the worse mom ever.  I should have been more on top of it so I could have gotten him in on time. 

 

Yesterday we headed to St. Mary's for his infusion.  We got there a little early because I was worried the roads would be bad.  They got us in a 1/2 hour early only to find out that Dr. Tung had only wrote the order for 6 months.  The plan had not changed so I assumed she had wrote a new order and she thought she wrote it for 1 year.  Oops.  Luckily she was as St. Mary's, bad part was that she was scrubbed in to surgery.  The sent her a STAT order for her to sign and send back.  That stat order took about 1 1/2 hours.  So we slowly got the IV team and Labs done, then got the acetaminophen and diphenhydramine and then finally at 3:30 we got the Remicade. (our appointment was at 2 and we got there at 1:30)  Matthew was a champ like usual.  It was a very long afternoon, we didn't get out until 6:00pm.  But it was well worth it.  Matthew is feeling better.

 

On Tuesday Dec. 10th I am heading to Lake Elmo Mn to attend a Parents seminar with the CCFA. After the defeating week I had, I felt like it would be a good thing to attend.  Dr. Tung just happens to be the presenter as well.  I am hoping to meet a few new parents that are going through the same things we are.