- Joined
- Feb 23, 2012
- Messages
- 180
I know its been a while since I have been on and gave an update. I am not even sure the last time I came and what the last update was. I believe last update was that we had just went and seen new doctor and we totally loved him. Well that part is still true.
A couple of weeks after we seen new dr in August Kota was hospitalized. Severe pain in stomach. When they did labs it showed 6mp had toxified his body and they said it was attacking his bone marrow. He was taken off 6mp and allopurinol right then. They thought he could just have an upper gi and get some answers but after doing that they realized that he had to do Upper and Lower scope. So they put in NG tube to do go litely clean out. This was new to him. Ko had never had a clean out like this. He did so good. He spent several days in the hospital. When we did follow up he was put on Entocort. The plan was to have him on that for 3 months. Then at the end of 3 months start cutting back Entocort.
So his 3 month appointment came and we went in to see Dr. Let me add again dr is great. Dr couldnt believe how good Ko looked. He was up playing and being a 12 year old again. Heart rate was even down to 110. He said he wanted to lower Entocort to 6mg and add in Methotrexate pill once a week. Sounded like a good plan or so I thought it did
I thought I would give him his first dose at bedtime when he took other meds. This way maybe if he had side effects he would sleep through some of them. Boy was I wrong. He woke about 1:30 am in lots of pain. Crying that this was the worse pain he had ever had. I gave him some tylenol and other meds to try and settle him a bit. He slept for a bit and then was in pain again. I emailed dr letting him know what was going on. He emailed me right back telling me this is a side offect of the medicine. It usually got better with doses and only lasted about 24 hours. Told me to keep in close contact with him letting him know how he was doing. Dr called later that evening and I let him know I couldnt get Ko to drink really anything. His symptoms where getting worse. Dr said to bring him to er. So we got to er and they did labs and started an iv. It is so great to finally have nurses that can start an iv the first time. As they were giving him fluids he spiked a fever of 102. Thats when they decided to admit him into hospital. Heart rate at that time was 150. Well for 2 days instead of fever coming down with the tylenol is would stay at 102 or just go higher. It got to 103.7. Heart rate while sleeping was 160. O2 keep going in mid 80 and resp was at 45-48. He was one sick little guy. They started 2 antibiotics,and morphine for pain. He was in hospital for 3 days. He was told if he could eat and not throw up he could go home. Which he did but was still in lots of pain. So we went home. His dr called me the next morning which was day before Thanksgiving. I answered phone and he said Marcia this is Dr.P how is our boy doing today. I said well not to good. He said why did they let you leave with him. I said becasue they said if he could eat and not throw up he could go home. He did that so we left. Dr said keep close eye on him and do not for any reason give him the Methotrexate. He said he had a severe reaction to the medicine. So he called everyday for the next 3 days checking in on Ko. Which I thought was great. We have never had a dr like that. He said to keep Entocort at 6mg.
Well we had to go back today for a checkup. Ko let him know that he feels better when he is on Entocort and doesnt ever want to take Metha again. Ko said he knew his face was getting puffy again from the steriod but he was okay with that because he was feeling better. So dr wanted him to stay on the Entocort alone for the next 6 weeks and then we come back and at that time if he is doing well we will cut back to 3mg. Heart rate was 76 today yay lowest since March.
At our appointment they came in and talked to us about the research program they have there. Its not for medicine its just data thats compared. I said so you are talking about Improve Care Now? I thought the lady was going to fall over. She says how do you know about Improve Care Now? I said I do my homework I said no I had checked into it when we were thinking of moving to different state a few months back. Dr P is one of the head dr over this.. There are 50,000 kids a part of this program in the US and Canada and now Ko is a part of that study.
Hopefully Ko is on his way to feeling better for awhile.. I hope he feels good for Christmas.
I have started working 3-4 days a week out of my home. I have done childcare for years so now I have a 3 year old, 2 year old and 18 month old. So yes I am super busy.
We got a call week before last week from Neurologist and they wanted to see him. I thought okay it would be a week or so. No they wanted to see him the next morning at 8. So we went to see Neuro and he said he wanted to send Ko to a Neuro surgeon to see if they may want to remove malformation on his brain. WTH can he never catch a break. The thought of brain surgery scares the **** out of me. While we were in that appointment I let dr know Ko was having more head aches. So he tried to look behind Kotas eye but couldnt see so he is afraid of swelling. So now we are going to see a Opthomologist also.
So thats a little of whats been going on.. I hope everyone has been doing well. I have missed coming here
A couple of weeks after we seen new dr in August Kota was hospitalized. Severe pain in stomach. When they did labs it showed 6mp had toxified his body and they said it was attacking his bone marrow. He was taken off 6mp and allopurinol right then. They thought he could just have an upper gi and get some answers but after doing that they realized that he had to do Upper and Lower scope. So they put in NG tube to do go litely clean out. This was new to him. Ko had never had a clean out like this. He did so good. He spent several days in the hospital. When we did follow up he was put on Entocort. The plan was to have him on that for 3 months. Then at the end of 3 months start cutting back Entocort.
So his 3 month appointment came and we went in to see Dr. Let me add again dr is great. Dr couldnt believe how good Ko looked. He was up playing and being a 12 year old again. Heart rate was even down to 110. He said he wanted to lower Entocort to 6mg and add in Methotrexate pill once a week. Sounded like a good plan or so I thought it did
I thought I would give him his first dose at bedtime when he took other meds. This way maybe if he had side effects he would sleep through some of them. Boy was I wrong. He woke about 1:30 am in lots of pain. Crying that this was the worse pain he had ever had. I gave him some tylenol and other meds to try and settle him a bit. He slept for a bit and then was in pain again. I emailed dr letting him know what was going on. He emailed me right back telling me this is a side offect of the medicine. It usually got better with doses and only lasted about 24 hours. Told me to keep in close contact with him letting him know how he was doing. Dr called later that evening and I let him know I couldnt get Ko to drink really anything. His symptoms where getting worse. Dr said to bring him to er. So we got to er and they did labs and started an iv. It is so great to finally have nurses that can start an iv the first time. As they were giving him fluids he spiked a fever of 102. Thats when they decided to admit him into hospital. Heart rate at that time was 150. Well for 2 days instead of fever coming down with the tylenol is would stay at 102 or just go higher. It got to 103.7. Heart rate while sleeping was 160. O2 keep going in mid 80 and resp was at 45-48. He was one sick little guy. They started 2 antibiotics,and morphine for pain. He was in hospital for 3 days. He was told if he could eat and not throw up he could go home. Which he did but was still in lots of pain. So we went home. His dr called me the next morning which was day before Thanksgiving. I answered phone and he said Marcia this is Dr.P how is our boy doing today. I said well not to good. He said why did they let you leave with him. I said becasue they said if he could eat and not throw up he could go home. He did that so we left. Dr said keep close eye on him and do not for any reason give him the Methotrexate. He said he had a severe reaction to the medicine. So he called everyday for the next 3 days checking in on Ko. Which I thought was great. We have never had a dr like that. He said to keep Entocort at 6mg.Well we had to go back today for a checkup. Ko let him know that he feels better when he is on Entocort and doesnt ever want to take Metha again. Ko said he knew his face was getting puffy again from the steriod but he was okay with that because he was feeling better. So dr wanted him to stay on the Entocort alone for the next 6 weeks and then we come back and at that time if he is doing well we will cut back to 3mg. Heart rate was 76 today yay lowest since March.
At our appointment they came in and talked to us about the research program they have there. Its not for medicine its just data thats compared. I said so you are talking about Improve Care Now? I thought the lady was going to fall over. She says how do you know about Improve Care Now? I said I do my homework
I said no I had checked into it when we were thinking of moving to different state a few months back. Dr P is one of the head dr over this.. There are 50,000 kids a part of this program in the US and Canada and now Ko is a part of that study. Hopefully Ko is on his way to feeling better for awhile.. I hope he feels good for Christmas.
I have started working 3-4 days a week out of my home. I have done childcare for years so now I have a 3 year old, 2 year old and 18 month old. So yes I am super busy.
We got a call week before last week from Neurologist and they wanted to see him. I thought okay it would be a week or so. No they wanted to see him the next morning at 8. So we went to see Neuro and he said he wanted to send Ko to a Neuro surgeon to see if they may want to remove malformation on his brain. WTH can he never catch a break. The thought of brain surgery scares the **** out of me. While we were in that appointment I let dr know Ko was having more head aches. So he tried to look behind Kotas eye but couldnt see so he is afraid of swelling. So now we are going to see a Opthomologist also.
So thats a little of whats been going on.. I hope everyone has been doing well. I have missed coming here
