- Joined
- Feb 23, 2012
- Messages
- 180
I know I havent posted in quite sometime, but I thought it was time to give an update.
We started seeing the new GI (the one thats apart of Inprove care now) We love him. You can tell he loves his job and helping kids with Crohns or UC is his number 1 priority. We learned more from him then we did the last GI. He talked to us about 2 hours. He decided at that time to cut Kotas Allapurinol down to 50mg a day and keep 6mp at 12.5mg because his counts still arent good. We did that and it seemed like Ko was feeling better. Dr ordered a Dexa scan since Ko has already broken a bone since coming off the steriods.
Well last Monday night Ko started running a high fever. Watched him through the night. By morning his fever was still there and his stomach had started to hurt worse. I called Gi doc. While waiting for call back, Ko starts throwing up blood. Let me just say it scared the crap out of me. He has never had blood in stool either. New hospital is an hour from us. So we started on over to the hospital before Dr called me back. Ko threw up again and it was blood. So dr called and said bring him to ER. Okay we are already on our way.
ER got us right in when we got there. They started an Iv and took blood. About 20 minutes after Kotas blood was taken my cell phone rings and its the Gi doctor himself. He said he had already told the GI floor that Ko was going to be admitted. Doc said the blood work doesnt look to bad. I asked okay when was this blood work done. Not realizing he could get results so fast. He said they were done at 4:52 today and it was 5:15. Wow he got results fast. Other Gi it took days if not a week for any results. He let me know that they were completely stopping Allapurinol and 6mp. Said his body was toxic and was attacking bone marrow. He said we may have to consider Remicade. But wanted to do some more testing.
Tuesday morning doctor on call said she was concerned with heart rate being so high it was 151. So she ordered an EKG. It looked great other than his heart rate being fast. Ko also has a history of nose bleeds. So they sent in a ENT to look in his nose and take pictures. To see if maybe thats where the blood was coming from that he threw up. They said it was possible but they were not for sure. The plan at that point was for him to go home off of all his meds other than nexium and amitriptyline. They wanted to watch him without meds. Dr on call said she wasnt convinced he actually did have Crohns. What you have got to be kidding me. Yes that would be great but why would other GI say he had it if he didnt. Old Gi wouldnt even return New Gi phone calls. Their plan at that time was to keep him off meds for 4 weeks and then do Colonoscopy. They way they could get a better look at him not being on meds. Although the 6mp they said had done more damage then good for Ko.
They come in and took IV out Wednesday morning and we are thinking we get to go home. Well we ended up having to stay another day. They did xrays and more blood work. Ko at that point was so ready to get home.. And disappointed that we had to stay again. We were told that they would be doing an upper GI the next morning.
Thursday morning about 5 his fever spikes again to 102. They come in at 5 to take blood. Well they couldnt get blood. So they had to send the IV team in to get blood. This lady was great. She took his blood in the dark. Thursday all Ko wanted to do was sleep. He went to sleep playing a video game with his brother. They came and did the upper Gi. And well you could see what looked good and what didnt:frown: The terminal ileum looked abnormal. So doctor came in and said we had to stay again. They would be going ahead and doing colonoscopy on Friday. So now came the fun part the clean out.
Ko has been one of the lucky ones he has never had an NG tube before. Well they had to start one so they could give him the Go lightly through it. NG tube went in really fast. All Ko did that afternoon and all night was sleep. I had to wake him and take him to restroom so he could go. And then he would go back to sleep while sitting there. He hadnt been given anything during the day to make him so sleepy. He doesnt even remember that night. They also started a new IV that day.
Friday morning was here and he still wasnt completely clean. So they gave us a few more hours and set up Colonoscopy for 130 that afternoon. They came and got us an dwe went do to preop. KO did great there. They came in and gave him some vercet. He was getting a little silly. We got to walk him down the hall and when they told him to tell us bye. I thought he was going to break my hand. He started to cry then. My heart was breaking. This is always the part he says he hates most is when they take him from me.
About 2 1/2 hours later doctor on call comes out to consult with us. Said upper Gi was right the terminal ileum wasnt normal. She said she had never seen anything that looked like Kotas. This is what it says on the report. Findings The mucosa of the rectum an dentire colon appeared grossly normal without evidence of erythema, ulceration or erosion. There was presence of erythema at th elevel of the cecum. The IVC apppeared inflammed and pale. The mucosa of the termial ileum showed patchy areas oferythema, friability with cobblestoning appearance of mucosa. No polps were detected, Retroflexed view of the rectum was normal.Air and fluid was suctioned and the scope was withdrawn from the patient and the procedure terminated.
Doctor said we were going to hold off on starting new meds to see what pathology reports said. She said we maybe able to but him on Entacort but she isn't sure until reports come back. He may have to have that part of intestine removed.
We had to go back to hospital yesterday for blood work. They did the test that suppose to be like the tb test but its with blood. They said it was more accurate. Wanted to have this test done so the results of it will be back around time pathology reports are back..
Okay you all know I amnot the smartest about Crohns but I am sure trying. When I got home and was comparing the pictures from last time (this Feb when dx) and then pictures from friday. The pictures from feb show his terminal ileum was normal. But now its not. The old pictures show the Ileocecal Valve was abnormal looked like blisters and puss. But they didnt even have a picture of that this time. So does that mean that it has spread from the Ileocecal Valve to the terminal ileum? Or did they not go far enough to see if it still looked bad. Sorry there are so many words I dont know that I am having to look up.
I am just ready for some answers. Well thats my update of whats been going on with us.
We started seeing the new GI (the one thats apart of Inprove care now) We love him. You can tell he loves his job and helping kids with Crohns or UC is his number 1 priority. We learned more from him then we did the last GI. He talked to us about 2 hours. He decided at that time to cut Kotas Allapurinol down to 50mg a day and keep 6mp at 12.5mg because his counts still arent good. We did that and it seemed like Ko was feeling better. Dr ordered a Dexa scan since Ko has already broken a bone since coming off the steriods.
Well last Monday night Ko started running a high fever. Watched him through the night. By morning his fever was still there and his stomach had started to hurt worse. I called Gi doc. While waiting for call back, Ko starts throwing up blood. Let me just say it scared the crap out of me. He has never had blood in stool either. New hospital is an hour from us. So we started on over to the hospital before Dr called me back. Ko threw up again and it was blood. So dr called and said bring him to ER. Okay we are already on our way.
ER got us right in when we got there. They started an Iv and took blood. About 20 minutes after Kotas blood was taken my cell phone rings and its the Gi doctor himself. He said he had already told the GI floor that Ko was going to be admitted. Doc said the blood work doesnt look to bad. I asked okay when was this blood work done. Not realizing he could get results so fast. He said they were done at 4:52 today and it was 5:15. Wow he got results fast. Other Gi it took days if not a week for any results. He let me know that they were completely stopping Allapurinol and 6mp. Said his body was toxic and was attacking bone marrow. He said we may have to consider Remicade. But wanted to do some more testing.
Tuesday morning doctor on call said she was concerned with heart rate being so high it was 151. So she ordered an EKG. It looked great other than his heart rate being fast. Ko also has a history of nose bleeds. So they sent in a ENT to look in his nose and take pictures. To see if maybe thats where the blood was coming from that he threw up. They said it was possible but they were not for sure. The plan at that point was for him to go home off of all his meds other than nexium and amitriptyline. They wanted to watch him without meds. Dr on call said she wasnt convinced he actually did have Crohns. What you have got to be kidding me. Yes that would be great but why would other GI say he had it if he didnt. Old Gi wouldnt even return New Gi phone calls. Their plan at that time was to keep him off meds for 4 weeks and then do Colonoscopy. They way they could get a better look at him not being on meds. Although the 6mp they said had done more damage then good for Ko.
They come in and took IV out Wednesday morning and we are thinking we get to go home. Well we ended up having to stay another day. They did xrays and more blood work. Ko at that point was so ready to get home.. And disappointed that we had to stay again. We were told that they would be doing an upper GI the next morning.
Thursday morning about 5 his fever spikes again to 102. They come in at 5 to take blood. Well they couldnt get blood. So they had to send the IV team in to get blood. This lady was great. She took his blood in the dark. Thursday all Ko wanted to do was sleep. He went to sleep playing a video game with his brother. They came and did the upper Gi. And well you could see what looked good and what didnt:frown: The terminal ileum looked abnormal. So doctor came in and said we had to stay again. They would be going ahead and doing colonoscopy on Friday. So now came the fun part the clean out.
Ko has been one of the lucky ones he has never had an NG tube before. Well they had to start one so they could give him the Go lightly through it. NG tube went in really fast. All Ko did that afternoon and all night was sleep. I had to wake him and take him to restroom so he could go. And then he would go back to sleep while sitting there. He hadnt been given anything during the day to make him so sleepy. He doesnt even remember that night. They also started a new IV that day.
Friday morning was here and he still wasnt completely clean. So they gave us a few more hours and set up Colonoscopy for 130 that afternoon. They came and got us an dwe went do to preop. KO did great there. They came in and gave him some vercet. He was getting a little silly. We got to walk him down the hall and when they told him to tell us bye. I thought he was going to break my hand. He started to cry then. My heart was breaking. This is always the part he says he hates most is when they take him from me.
About 2 1/2 hours later doctor on call comes out to consult with us. Said upper Gi was right the terminal ileum wasnt normal. She said she had never seen anything that looked like Kotas. This is what it says on the report. Findings The mucosa of the rectum an dentire colon appeared grossly normal without evidence of erythema, ulceration or erosion. There was presence of erythema at th elevel of the cecum. The IVC apppeared inflammed and pale. The mucosa of the termial ileum showed patchy areas oferythema, friability with cobblestoning appearance of mucosa. No polps were detected, Retroflexed view of the rectum was normal.Air and fluid was suctioned and the scope was withdrawn from the patient and the procedure terminated.
Doctor said we were going to hold off on starting new meds to see what pathology reports said. She said we maybe able to but him on Entacort but she isn't sure until reports come back. He may have to have that part of intestine removed.
We had to go back to hospital yesterday for blood work. They did the test that suppose to be like the tb test but its with blood. They said it was more accurate. Wanted to have this test done so the results of it will be back around time pathology reports are back..
Okay you all know I amnot the smartest about Crohns but I am sure trying. When I got home and was comparing the pictures from last time (this Feb when dx) and then pictures from friday. The pictures from feb show his terminal ileum was normal. But now its not. The old pictures show the Ileocecal Valve was abnormal looked like blisters and puss. But they didnt even have a picture of that this time. So does that mean that it has spread from the Ileocecal Valve to the terminal ileum? Or did they not go far enough to see if it still looked bad. Sorry there are so many words I dont know that I am having to look up.
I am just ready for some answers. Well thats my update of whats been going on with us.
But, I am glad that you like his new GI and that they are looking at all his issues seriously - its about time! :ymad: I really hope you finally get some answers for him! :ghug:
