Sunday, 2 October 2011

HOME

Our second week at RM House went just as quickly as the first week. Logan had to go to the hospital every second day for a check up and blood tests.
His appetite is still very small, but he manages to eat small amounts. One of the drugs he is on affects the appetite. So he still gets fed via his NG tube, but only over night now.
Tuesday the 27th september we go back to see the specialist, Logan said he cant wait to see her so she can tell us to go home. Tuesday morning took quite a long time to pass, Logan was looking at the clock every 15minutes, our appointment wasnt untill 1 oclock.
His blood tests the day before were all good, his physical exam was also good so we were told we could go home. Logan couldnt stop smiling.
The first flight we could get was the next morning. WE ARE NOW HOME!!!!!!
We can see an improvement in him over the last couple of days, he is getting colour in his cheeks and his energy levels are improving. Its really good to see him walking around outside with the dog.
Today his appetite has picked up a bit more, twice so far today he has said he is hungry. Tonight we are having his favourite meal, (roast lamb), that will surely get him eating.
Wednesday next week he is due back in Auckland for a check up. Thursday he is going into theatre to have his hickman line taken out. They dont usually take it out for 6 months. With all the questions Logan asked about what he is allowed to do, they decided to take it out so he can start having a lifestyle, they said if he needs anything they will put a temporary line in his hand or arm to give him what he needs. Then we will be home again on friday.

Sunday, 18 September 2011

At RM House

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

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!

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.

Tuesday, 23 August 2011

18th August - 23rd August.

This week Logan took two steps backwards.
First he starting spiking fevers and feeling lousy, then he started getting stomach pains.
He had an xray which didnt show a great deal, so he had an ultra sound which showed inflammation of the bladder. The pain was getting pretty bad so he was put on fentanyl and was given a pump so he could give the painkiller to himself. The next morning he was still in alot of pain and it was discovered he wasnt getting the correct dose. To cut a long story short, he is now on ketamine and morphine because his pain became unbearable.
The cause of his pain is hemorrhagic cystitis, which is inflammation of the bladder. This is caused by either a virus which he has tested negative for so far, or from the chemo he received. The doctor said its more than likely the chemo.
Since thursday Logan has done nothing but pass blood and blood clots. At the moment he is getting large amounts of fluids to flush him out. Which causes other problems that I wont get into or I will be writing all night.
Friday he was made nil by mouth. Just when he had started taking his drugs orally it all had to stop. His stomach couldnt cope. Everything is IV again.
His NG feed had to stop also so now he's back on TPN.
It has been a very tough and frustrating time for him and I feel very proud of the way he has coped.
He can be feeling really terrible, but when someone asks him how his is he never complains he always says good. The nurses have worked him out now though and tease him about not complaining.
We do have good news though, his graft is looking really good. His cells are coming up most days.
His white cell count is 3.01 and his neutrophils are 1.18. If he didnt have this speed bump we would have left hospital and gone to Ronald McDonald House.
We also have another fart story: When Caitlin came up on friday she brought a fart machine up with her (Logan says thankyou Paul for the loan of it). This one is activated by remote, he pulled the usual stunt on the nurses which got a few laughs. One of the nurses dared him to do it to the doctor on rounds. On saturday morning it was a consultant we hadnt met before doing rounds so Logan put the machine under the covers and had the remote in his hand. The doctor said his thing then asked Logan if he could feel his stomach, Logan said "hang on" lifted his leg pressed the remote and let out a huge fart. The doctor thought Logan had really done one. The nurse had to let him know it wasn't Logan it was a joke. I still cant believe he did it, I didnt think he would go through with it.
 I'm not too sure how much longer we will be here, the doctors cant say how long it will take to come right, they just say things like "it can take a while" and "we can only treat the symptoms".
Logan has received alot of pictures, cards, goodies, texts and messages of support that we need to say a big thankyou for. It is very much appreciated and it brightens his day so thankyou.

Wednesday, 17 August 2011

Things are on the up

During the past week Logan has been given one blood transfusion and platelets three times. He is doing really well. His cell count is at 1.23, and he now has neutrophils they are at .53, this is very exciting.
But I lost the bet, it is wednesday and we are still here. Logans neutrophils need to be at least 1.0 and his cell count needs to be between 2 and 3.
His blood pressure never came down so he has regular meds for this, once some of the drugs stop it will more than likely come down.
It is easy to see he is feeling better. He has started hassling some of the nurses. On his ipod he has fart noises, he puts the ipod under his covers, waits for a poor unsuspecting nurse to come in then presses the button and lets rip. The look on their face is priceless, a good laugh is had by all.
This afternoon has been a bit of a step back though, he has spiked a fever and is back on antibiotics. They arent sure why, but have taken blood cultures from his hickman line. We will know in a couple of days if its his line or a virus.

Thursday, 11 August 2011

Back on line

Once again we have the internet back on so you get bombarded with a lot.

Logans echo came back all good.

The following week was really tough for Logan. He ended up with Sepsis. His temperature was up most of the time, the highest I saw it was 40.
When he first came into hospital his heart rate was around 50 beats a minute, they thought it was quite low but they soon realised it was normal for Logan. During this week it went up to 152 beats a minute. He also spent 90 per cent of the time asleep.

Day +8 he was given platelets and a blood transfusion. He also started on something called GCSF, this helps the graft to grow. He also had a bad headache all day.

Day +9  Today it felt like the only time he was awake was to go for a pee. His temperature was up most of the day and he still had a headache. Apparently some of the drugs he is on can cause this.
He had another blood transfusion, it takes two hours for the transfusion to go through, towards the end he broke out in a rash, it was all over his torso. The Doctors were sent for and they seemed to think it was an engraftment rash.
He also became very sensitive to light, so when he was awake he couldnt have his eyes open for long, it was too sore. The blinds had to be kept closed on one side of the room.

Day +10 Logan still has his rash this morning, the Doctor has said it doesnt look like your typical rash associated with this, so he was speaking to a Virologist to see about testing for viruses, where the best place to get a specimen is.
Because of all the treatment Logan has become low in potassium phosphate and magnesium, so he now gets those via his NG tube.
Because he still has a headache and is still sensitive to light, they have decided to give him a CT scan to look for infection.
He also had to have a lumbar puncture to rule out infection also. Originally they said they were going to sedate him but because of his heart rate and blood pressure at the time they were worried it would lay him out too much so decided not to. Instead they put numbing cream on his back. He did exactly what the doctor said and kept still. You could see it was really painful but he was soooo BRAVE, the only thing he said was "this hurts", but he could have been talking about the weather. For those of you who are interested, spinal fluid looks just like water. (Yes I watched the whole thing).
The good news is he didnt have meningitis or any other ugly virus.
Logan was also given platelets again today.

Day +11 Logan was given his weekly immunoglobulin (prevents viral infections)
His temperature was not as high today and he seemed to feel a little bit better.
More platelets were given tonight.
In general he had quite a good day yaaaaay.

Day +12  Just when you think you have gone a two steps forward you take one back.
Logan woke feeling really tired and dizzy with a temperature. He slept most of the day.
He was given extra fluids and more platelets.
Today is the first day he has shown sign of new cells. Before the tests would show less than 0.1 today he has 0.1 so that is REALLY EXCITING.

Day +14 Logan was given more platelets this morning. His temperature got up a couple of times today, that can cause his platelet levels to drop.
He had a reaction to his antibiotics today. He broke out in a rash, you could literally see it spread over his body. Once again the doctor was called to take a look at him. The rash went as fast as it came though. He's still on it but they dilute it down more and give it to him over 1 hour. Which is just as well as its the best one for the infection he has.

Day +15 Yaaaaay his cell count has gone up to 0.15 where it sayed for two days.
He's feeling a lot brighter, and is awake more than he is asleep.

Day +16 White cell count is at 0.26 thats a big jump from yesterday. Once he's at between 2 and 3 we can go to Ronald McDonald House as an outpatient. I have got a bet going that by next wednesday we will be there so fingers crossed.
The only down side is his blood pressure is really high at the moment. He's been given another drug to rectify this. He's also been given more platelets today.