Our first week here has gone really quickly. Logan has had to go to clinic 3 times during the week and have blood tests done. Friday was our longest visit there, he had to have his weekly IV antibiotic for the BK virus but first you have to have IV fluids for an hour, you also need fluids afterwards.
Saturday was a bit of a drama, his NG tube blocked at 2.30 am, I couldnt unblock it so I unplugged him from his feed and turned it off. At a more normal hour I tried unblocking it again and couldnt, so it was back up to the hospital to see if they could. They tried using coke to flush it, sometimes that works but not this time. So Logan pulled his tube out and they had to put a new one in.
His stomach is still not quite right, but is starting to eat very small amounts now and again.
Tomorrow morning he is due to have more blood tests done, then he will be reviewed to see when we can go home. If its not this week it will be next, but this week is looking very promising. Fingers crossed
Sunday, 18 September 2011
Friday, 9 September 2011
On the move
Things are great. Logan is off TPN and his NG feed is at his ideal rate of 75mls an hour. The move down the other end went well, but he wasnt able to leave his room much because of the catheters. (he wasnt able to wear pants with them).
The first catheter was taken out on monday that was pretty straight forward. Yesterday the catheter that goes through his stomach was due to come out, so the nurse came along with her tools and bottle of laughing gas. What is supposed to happen is you deflate the balloon of its fluid and it should pull out, but this didnt happen, the tube only came out so far then stopped. She tried a couple of times but stopped because she wasnt sure why it wouldnt come out.
The surgeons were called to come and take a look. Five and a half hours later they came. They were told to come back in the morning as it was 9.30 at night. 7am she was back, had a look and decided that she was going to just pull it out. The reason she said it never came out yesterday was because the hole had closed up a bit but a good yank would get it out.
So Logan was given panadol, tramadol and laughing gas. The Doctor got hold of the tube and just pulled the balloon out through his stomach. I couldnt believe it. It hurt him so much that he reached down and grabbed hold of the surgeons hand to get her away from him. He was then given oxynorm, thats a painkiller also.
The transplant coordinator cant believe they did that to him, she said he should have gone into theatre to have it removed. She is going to speak to higher powers.
So now he has another bravery bead.
The best news is today we are moving to Ronald McDonald House. Yesterday we went down to have a look. Its a transplant unit and fully self contained, very nice, and yes it has sky sport.
Logan has had his room decorated with All Black posters and flags amongst other things. This drew the attention of Jo, she is the nurse educator up here, she is also English. She would tease him that one day he would wake up and find pictures of English players in his room. Logan told her that seeing that would make him sicker. One day Logan decided to make a poster for her office door, it said "Jo loves the All Blacks" and it had silver streamers hanging off it. It is really quite large. The next morning she got to work and was on the war path wanting to know who did it. She was told, then came to see Logan and told him it was great but just you wait. It is still on the door, she will keep it there untill the world cup ends.
A couple of days later Jo had made him a poster, on it she had put photos of English players and it said "Logan loves English players", she put this on his door facing inwards. Logan screwed his nose up but had a good laugh about it.
But Logan couldnt leave it at that, as today is our last day here he decided to make another poster. This one is a picture of Johnny Wilkinson he got out of a magazine, he also got a picture of an All Blacks jersey. He glued the All Blacks jersey onto Johnny Wilkinson so it looks like he's wearing it and wrote beside it "English players dream of becoming an All Black", and put this on her office door beside the other one. Jo loves it. I have taken photos so can show you at a later date.
At the moment Logan is having his intragram, and we're waiting to hear if he needs platelets, then we are OUT OF HERE!
The first catheter was taken out on monday that was pretty straight forward. Yesterday the catheter that goes through his stomach was due to come out, so the nurse came along with her tools and bottle of laughing gas. What is supposed to happen is you deflate the balloon of its fluid and it should pull out, but this didnt happen, the tube only came out so far then stopped. She tried a couple of times but stopped because she wasnt sure why it wouldnt come out.
The surgeons were called to come and take a look. Five and a half hours later they came. They were told to come back in the morning as it was 9.30 at night. 7am she was back, had a look and decided that she was going to just pull it out. The reason she said it never came out yesterday was because the hole had closed up a bit but a good yank would get it out.
So Logan was given panadol, tramadol and laughing gas. The Doctor got hold of the tube and just pulled the balloon out through his stomach. I couldnt believe it. It hurt him so much that he reached down and grabbed hold of the surgeons hand to get her away from him. He was then given oxynorm, thats a painkiller also.
The transplant coordinator cant believe they did that to him, she said he should have gone into theatre to have it removed. She is going to speak to higher powers.
So now he has another bravery bead.
The best news is today we are moving to Ronald McDonald House. Yesterday we went down to have a look. Its a transplant unit and fully self contained, very nice, and yes it has sky sport.
Logan has had his room decorated with All Black posters and flags amongst other things. This drew the attention of Jo, she is the nurse educator up here, she is also English. She would tease him that one day he would wake up and find pictures of English players in his room. Logan told her that seeing that would make him sicker. One day Logan decided to make a poster for her office door, it said "Jo loves the All Blacks" and it had silver streamers hanging off it. It is really quite large. The next morning she got to work and was on the war path wanting to know who did it. She was told, then came to see Logan and told him it was great but just you wait. It is still on the door, she will keep it there untill the world cup ends.
A couple of days later Jo had made him a poster, on it she had put photos of English players and it said "Logan loves English players", she put this on his door facing inwards. Logan screwed his nose up but had a good laugh about it.
But Logan couldnt leave it at that, as today is our last day here he decided to make another poster. This one is a picture of Johnny Wilkinson he got out of a magazine, he also got a picture of an All Blacks jersey. He glued the All Blacks jersey onto Johnny Wilkinson so it looks like he's wearing it and wrote beside it "English players dream of becoming an All Black", and put this on her office door beside the other one. Jo loves it. I have taken photos so can show you at a later date.
At the moment Logan is having his intragram, and we're waiting to hear if he needs platelets, then we are OUT OF HERE!
Friday, 2 September 2011
It turns out the Hemorrhagic Cystitis Logan has is caused by the BK Virus. Apparently a lot of people have it but it nothing comes of it. Because Logan is immunosuppressed it has managed to cause him some bother. Logan calls it the burger king virus.
They had been giving him a lot of fluids to flush his bladder, clear the blood clots and to try and stop the bleeding. This caused too many other problems, not to mention all the pain he was in. He was getting nowhere near enough sleep and was completely exhausted.
So they decided it was time to put a catheter in. He ended up having two. One taking fluids in, this one went through his stomach and into the bladder, and the one going out. He has 100ml and hour going through as a flush. Finally he was able to sleep.
The op went well, but he needed oxygen for the next 16 hours as his breathing wasnt the best. He also had one on one nursing care for the next 48hrs, until he was stable. I think a lot of this had to do with all the painkillers he was on. He was on IV morphine and ketamine.
When he went down to theatre he was like a happy drunk, he had so many painkillers in him. He was giving the anaethetist a bit of stick about her hat, he thought she looked like a kitchen worker. Logan is not usually like this with strangers as you would know.
She gave him a bit of stick back by asking him if the gas smelled like oranges or petrol.
The next day when she came up to see how he was she said he had charmed all the ladies in theatre.
After a couple of days his fevers finally started to subside and his pain was a bit less.
Three times they have tried reducing the amount of flush going through but within the hour it was back to being red with clots and having to be put back up again. Today it was reduced again and finally it is staying clear.
Things are looking really good. His graft couldnt be better. The doctors are really pleased with how the transplant has gone and the way his cells are growing. They think he is a showoff with the numbers he has.
We found out tonight that he is coming out of isolation on sunday and going on the ward, this is a huge step. He is going down the teenagers end which is quite nice, they have a lounge just for them and he will finally get to talk to some other kids.
He is slowly getting taken off the IV painkillers. His NG feed is getting increased slowly which means he will be coming off the TPN soon. Within the week hopefully he will be able to have some of his drugs orally, the sooner this happens the sooner we can go to RMH. He hasnt eaten a meal in over 6 weeks and he's been nil by mouth for a while so it will take a while for his stomach to adjust to the NG feed again.
During all this he still managed to have a bit of fun. He managed to pull one over me which doesnt happen very often. A nurse had come in to do his obs, Logan was just sitting up in bed when he said all of a sudden "I'm going to vomit", Carol and I looked at each other, I ran for the vomit bowl and gave it to him, he put his face in it pressed his ipod, and out came a vomit noise. Then he looks up with a cheesy grin on his face.
Where Logan got his strength from during this I will never know, he has been amazing.
He has been given two bravery beads to put with his beads of courage, he truly deserves them.
They had been giving him a lot of fluids to flush his bladder, clear the blood clots and to try and stop the bleeding. This caused too many other problems, not to mention all the pain he was in. He was getting nowhere near enough sleep and was completely exhausted.
So they decided it was time to put a catheter in. He ended up having two. One taking fluids in, this one went through his stomach and into the bladder, and the one going out. He has 100ml and hour going through as a flush. Finally he was able to sleep.
The op went well, but he needed oxygen for the next 16 hours as his breathing wasnt the best. He also had one on one nursing care for the next 48hrs, until he was stable. I think a lot of this had to do with all the painkillers he was on. He was on IV morphine and ketamine.
When he went down to theatre he was like a happy drunk, he had so many painkillers in him. He was giving the anaethetist a bit of stick about her hat, he thought she looked like a kitchen worker. Logan is not usually like this with strangers as you would know.
She gave him a bit of stick back by asking him if the gas smelled like oranges or petrol.
The next day when she came up to see how he was she said he had charmed all the ladies in theatre.
After a couple of days his fevers finally started to subside and his pain was a bit less.
Three times they have tried reducing the amount of flush going through but within the hour it was back to being red with clots and having to be put back up again. Today it was reduced again and finally it is staying clear.
Things are looking really good. His graft couldnt be better. The doctors are really pleased with how the transplant has gone and the way his cells are growing. They think he is a showoff with the numbers he has.
We found out tonight that he is coming out of isolation on sunday and going on the ward, this is a huge step. He is going down the teenagers end which is quite nice, they have a lounge just for them and he will finally get to talk to some other kids.
He is slowly getting taken off the IV painkillers. His NG feed is getting increased slowly which means he will be coming off the TPN soon. Within the week hopefully he will be able to have some of his drugs orally, the sooner this happens the sooner we can go to RMH. He hasnt eaten a meal in over 6 weeks and he's been nil by mouth for a while so it will take a while for his stomach to adjust to the NG feed again.
During all this he still managed to have a bit of fun. He managed to pull one over me which doesnt happen very often. A nurse had come in to do his obs, Logan was just sitting up in bed when he said all of a sudden "I'm going to vomit", Carol and I looked at each other, I ran for the vomit bowl and gave it to him, he put his face in it pressed his ipod, and out came a vomit noise. Then he looks up with a cheesy grin on his face.
Where Logan got his strength from during this I will never know, he has been amazing.
He has been given two bravery beads to put with his beads of courage, he truly deserves them.
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