The night of the diagnosis Matthew wasn't feeling well. He had 2 bites of dinner and was screaming in pain. He was having trouble making it to the bathroom as well. We got him calmed down and off to bed. On the 27th I had worked all day. When I got home at about 4:30 Matthew had a fever of 101.7. One thing that we have learned is that with Crohns you can get a low grade fever for a few days. I gave him some Tylenol and we headed to my mom's in Byron to pick up a few things. He was miserable the whole time. When we got home around 7:00 his temp was up to 102.4. At this time he had again had just a few bites of dinner and started screaming again. We tried to get him to use the bathroom and it didn't seem to help. He had a Popsicle and some cool water and his temp was down to 101.5. He said he was having a lot of tummy pain and wouldn't stand up or walk. He just wanted to lay around. I called the Nurse line at Mayo shortly after 9:00. I explained everything with the Crohns and what had been going on. They were worried that it could be a infection or abscess somewhere. So Ryan took him in. I stayed with the other boys and got them off to bed. While in the ER they had done some blood work and found that his potassium was low. They also took a chest x-ray to rule out pneumonia. The GI Doctor had said to send him home and that they would see him in the morning. The Nurse wasn't OK with that and insisted that he be admitted. Ryan called about 12:00am and told me that they were admitting him. I rushed the boys to Jamison and Whitney's house for the night and went on up to St. Mary's. I got in there through a snow storm at about 1:00am. They had him up in is room and hooked up to an IV and the peds doctors were in checking on him. One of them detected a heart murmur as well. She said she is not worried about it but made sure to note it so that others would check for it. Matthew, Ryan and I got all tucked in to our beds and cots and Matthew was out. The nurses came in a little while later and started his IV potassium. Good thing Ryan was right by him. I guess Potassium stings when its going in. Matthew was crying and pulling at his IV so Ryan had to hold his other hand back to avoid him pulling out his IV.
The next morning, 12/28/2012, they came in to take blood at 7:30am. The first lady couldn't get it, he was screaming and moving and she just couldn't get it. She had to call in another lady to help. After about an hour of fighting with him they finally got it done. Shortly after that the Peds GI doctor(yes the same one who wanted to send him home) came up for rounds. He was a little crazy. After checking out Matthew he told us that he wanted to start the tests and treatment sooner then waiting till the 7th. The first test was going to be a MRI with a barium swallow, and yet another blood test. While waiting for them to come get us for MRI we had a knock at the door...It was Dr. Tung. Every morning they have a meeting about all the GI patients that are in the hospital. When Matthew's name came up she left the meeting and came running right up. She came in and checked him out and started talking to him a little about what was going on with his body. She explained it in terms that he could understand. Ryan and I then had a meeting with her down the hall and talked about treatment options a little before they came to get him for MRI.
MRI was not fun. Matthew had to drink a jug of barium. He started off OK but towards the end it was had. They gave him a shot of glucogon I believe to make his intestines and stomach sit still during the test. After he drank all his barium Matthew and I headed in to the MRI. He did really well until they put the contrast into his IV. After that he was screaming that he was going to get sick and I had to hit the emergency button and the tech had to pull him out so he could calm down. After a few minutes he was back in the MRI machine to finish. Oh but the doctor says that he didn't get enough barium and we had to go back out and he had to drink more and then go back in and do some more pictures. We were down there from about 9:45 am until after 1.
Our "hotel" room over Christmas Break!
Ryan went and got the other two boys and Marni and Thor came up to visit. Matthew got to eat finally also. Oh and another blood test happened, that went great, NOT! Karen stopped and picked the boys and took them to Ryan's sister Chris's house for the night. It was pretty much just the 3 of us hanging out the rest of the night. The peds team of docs came in and said hopefully by morning we would know the plan. Matthew slept really well. He slept from about 8-8 with only a few wake ups to go to the bathroom.
Saturday the 29th, the GI Doctor came in and explained that the treatment they were starting him on first couldn't be started till at least Monday. Not what we wanted to hear. She said that we would start a steroid to help the inflammation until then and then taper off of that. We asked about if we had to stay or if we could do it at home. She had given us 2 options, Stay with IV steroids and then treatment on Monday or pill steroids at home and treatment on Monday or Tuesday. Well she didn't let us answer and then left and told the nurses that we were staying and that plan. So we talked with the nurses and the other peds doctors and ended up getting our way. Everything they were going to do for him the rest of the day and Sunday were things we could do on our own at home. So Home we went!
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Matthew Mastered the Bed and the TV remote!
He got a few visitors too! Uncle David and Dad cuddled in his bed.
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Of course as soon as we left Matthew got a fever and belly pains again. We ran to Altura to get the other boys and see Ryan's family for Christmas and then to Byron to get Jaxon from my mom's. Matthew wouldn't eat again and was feeling pretty bad. We got him calmed down and tucked in at home and he slept great.
Today he is feeling pretty good. No fever since this morning and only tummy pains if he needs to go to the bathroom. It nice to be home and all together.
