- Joined
- Feb 23, 2012
- Messages
- 180
I am sorry I havent been able to come here and update like I want to. It seems everything is always so crazy lol.
Last year was a bad year all around. Not only did we make it through crohns dx with several hospital stays, broken wrist, malformation on the brain, horrible learning delays, separated from husband after 23 years of marriage. Wow the list could go on and on. But even after all this I still feel so blessed. I know it could be so much worse.
I think the last time I updated on Kota was right before he went to see the Nuero surgeon on the malformation of his brain. And we had decided to start weaning of Entocort.
Well we went and seen surgeon. He said he just wanted to watch malformation and make sure it doesnt change. He said at this time he felt it was more serious to remove. Because where it is located it could effect his eye sight. So we are just watching that.
We did cut back Entocort from 6mg to 3mg. Well that didnt go as well as we had wanted.About the third day off Ko developed a horrible headache. The worst he said he has ever had. I called Nuero because I wasnt sure if it might have been from malformation or what.. They called in a new migraine med and upped his Amitriptyline to 100mg. Said if pain got to bad to bring him to er. So we ended up in the er staying the night with iv, lots of blood work, morphine and zofran. All labs looked perfect. So they got pain under control and told me to follow up with Nuero and GI. So I did the next day. GI asked how he was feeling I said he still has horrible headache. Hasnt eatten in a few days and it takes all I can do to just get him to drink. GI said he thought Ko was having severe withdrawl from the steriods. Once again Ko isnt your typical he is so sensitive to everything. We upped Entocort back to 6mg. Gi said if he wasnt eatting, pain got worse or fever to call back and talk to on call GI since it was Friday evening. Well Saturday morning he started throwing up bile and low grade fever and wouldnt drink. So I called GI and was told to bring him straight to Er so we did. Started another IV did lab work and xrays of tummy. This time labs were out of wack. Inflammation markers were high as high as they were a year ago when we first got dx. Ugh I feel like we are just spinning in circles. Stayed about 12 hours in Er and was told we could go home or they could admit him. Of course Ko wanted to go home and I felt good taking him home.
GI called on Monday to check on Ko and we set up appointment for folowing week. So we went Tuesday to see Gi. Inflammation markers had come back down. He said we are going to have to do a super slow wean of the steriods becasue Kotas body is dependant on the them. He has been on some form of steriod for 11 out of the last 12 months. Now we do 6mg for 6 days and 1 day 3mg. Next week 6mg for 5 days and 3mg for 2 days. So on until he is weaned. We talked a little about trying the pro graf. He said we would talk more about it at next visti which is in 4 weeks. He said at one point we may look at our other opintions such as surgery to remove the section. He said if it is still in the one area Terminal Illiuem then he could just remove that section. No bags or anything would be needed. That may make it stay away or it may come back there are no guarantee it will work.
Now thats all Ko is thinking about. He would have the surgery tomorrow if there is a chance he could feel better. He says he doesnt care if its just temporary. He just wants to feel better
I am undecided on what to do. I know we will talk more about it when we go in.
Do any of and you have any input or been there and had the surgery.
Thanks
Last year was a bad year all around. Not only did we make it through crohns dx with several hospital stays, broken wrist, malformation on the brain, horrible learning delays, separated from husband after 23 years of marriage. Wow the list could go on and on. But even after all this I still feel so blessed. I know it could be so much worse.
I think the last time I updated on Kota was right before he went to see the Nuero surgeon on the malformation of his brain. And we had decided to start weaning of Entocort.
Well we went and seen surgeon. He said he just wanted to watch malformation and make sure it doesnt change. He said at this time he felt it was more serious to remove. Because where it is located it could effect his eye sight. So we are just watching that.
We did cut back Entocort from 6mg to 3mg. Well that didnt go as well as we had wanted.About the third day off Ko developed a horrible headache. The worst he said he has ever had. I called Nuero because I wasnt sure if it might have been from malformation or what.. They called in a new migraine med and upped his Amitriptyline to 100mg. Said if pain got to bad to bring him to er. So we ended up in the er staying the night with iv, lots of blood work, morphine and zofran. All labs looked perfect. So they got pain under control and told me to follow up with Nuero and GI. So I did the next day. GI asked how he was feeling I said he still has horrible headache. Hasnt eatten in a few days and it takes all I can do to just get him to drink. GI said he thought Ko was having severe withdrawl from the steriods. Once again Ko isnt your typical he is so sensitive to everything. We upped Entocort back to 6mg. Gi said if he wasnt eatting, pain got worse or fever to call back and talk to on call GI since it was Friday evening. Well Saturday morning he started throwing up bile and low grade fever and wouldnt drink. So I called GI and was told to bring him straight to Er so we did. Started another IV did lab work and xrays of tummy. This time labs were out of wack. Inflammation markers were high as high as they were a year ago when we first got dx. Ugh I feel like we are just spinning in circles. Stayed about 12 hours in Er and was told we could go home or they could admit him. Of course Ko wanted to go home and I felt good taking him home.
GI called on Monday to check on Ko and we set up appointment for folowing week. So we went Tuesday to see Gi. Inflammation markers had come back down. He said we are going to have to do a super slow wean of the steriods becasue Kotas body is dependant on the them. He has been on some form of steriod for 11 out of the last 12 months. Now we do 6mg for 6 days and 1 day 3mg. Next week 6mg for 5 days and 3mg for 2 days. So on until he is weaned. We talked a little about trying the pro graf. He said we would talk more about it at next visti which is in 4 weeks. He said at one point we may look at our other opintions such as surgery to remove the section. He said if it is still in the one area Terminal Illiuem then he could just remove that section. No bags or anything would be needed. That may make it stay away or it may come back there are no guarantee it will work.
Now thats all Ko is thinking about. He would have the surgery tomorrow if there is a chance he could feel better. He says he doesnt care if its just temporary. He just wants to feel better
I am undecided on what to do. I know we will talk more about it when we go in. Do any of and you have any input or been there and had the surgery.
Thanks
