Saturday night was a bad one for Rhys. He was sick a number of times and the nurse needed to aspirate him through the NG tube.
The tube has been a source of real annoyance to him recently because it irritates his nose and throat. Unfortunately there is nothing the nurses can do as he needs to have the tube in so that some of the gunk that's building up in his stomach can be removed. Without the tube he'd be vomiting a lot more than he is.
The only alternative that has been suggested is replacing the current tube with a softer, narrower one but that has the drawback that it might not be possible to aspirate properly.
Hopefully thought we are reaching a turning point with the tube because the fluid that the nurses are started to extract this morning looks a lot clearer and normal that the rather fetching green colour that they have been getting.
7:30am Sunday morning and we'd been up for nearly two and a half hours, Rhys was managing to doze something he manages with little problem. We were waiting for the doctors to come and see Rhys and then I'd be able to go and get a change of clothes, some breakfast and then come back into hospital with an overnight bag because Rhys wanted me to stay in. Hopefully he wouldn't have a night like the one just gone past.
Its no secret that as a family we are Christians and attend St James Church in Yeovil. Rhys has grown up at St James and developed his faith through there and also through the youth group at St Johns. Through everything that he's been through yesterday morning was the first time that I'd heard him actually questioning what is happening to him and asking why God allows this to happen to him. He wants answers to his questions, as do we all. Nobody we've spoken with can understand why Rhys has had to deal with his neurofibromatosis, the leukaemia and now this tumour. I know that Rhys' faith will not come out of this unscathed. Whether it will be strengthened or weaken it is still open for debate.
Sunday, 4 May 2014
Saturday, 3 May 2014
Day 7 in a new bed
Today saw Rhys get a break from Mum, a new bed and some visitors.
When Rhys was in hospital having his transplant we got into a routine where Mum went to stay with her sister over weekends. We took Tracey up to the Cotswolds this morning. Good home-cooked food and the odd glass of vino are the order of the weekend.
I managed to arrive back at the hospital just in time to help as the nurses were trying to get Rhys to sit in the chair so that they could swap the bed for one with a mattress that inflates and deflates to adjust to the body and allow for Rhys to get into differing positions and not get too sore as a result. Lying down for 6 days might sound fun but its certainly not.
The nurses had just got Rhys sitting up as I arrived but he didn't feel like standing up, walking around the bed (being followed by two drip stands) and then sit down in the chair. For the last 6 days he's probably not moved more that 6 feet in total, let alone 6 feet in one go.
The solution was obvious. Since Rhys couldn't go to the chair then the chair had to come to Rhys. Standing up, taking one or two shuffling steps and sitting down was a lot easier to do.
With the bed swapped for the new one the trip back into bed was a equally as short.
The new mattress has taken some getting used to. Rhys has finally managed to get into a position where he's comfortable enough that with the aid of our friend morphine he's drifted off to sleep. With the help of one of the nurses we managed to get him in a bit more of an upright position. Its not surprising that he has fallen asleep though. The sun is shining outside and as much as the room is shaded it still feels like we're sat in a greenhouse.
Just before 11am Nanny and Grampy arrived to visit. Rhys was awake enough to be able to say hello but left most of the talking to Nanny. We sent them out to get something to eat at lunchtime which was well timed as Rhys then fell asleep. Obviously my company isn't exciting or riveting enough. Not surprising, I'd fall asleep if I had me to keep my company.
The rest of the day has been filled with bleeping medical equipment, a nasal gastric (NG) tube that is irritating Rhys' nose and lots of generally not being well. In fact for the first time in days we don't have a TPN meal of the day.
To show you how bad Rhys was feeling this evening he decided that he wanted me to stay in hospital with him overnight. Something that's not happened once since we've been up here this week. So my nice, comfortable double bed at CLIC House has been swapped for a pull-down hospital bed in a room filled with bleeping machines and a noise that borders on snoring.
When Rhys was in hospital having his transplant we got into a routine where Mum went to stay with her sister over weekends. We took Tracey up to the Cotswolds this morning. Good home-cooked food and the odd glass of vino are the order of the weekend.
I managed to arrive back at the hospital just in time to help as the nurses were trying to get Rhys to sit in the chair so that they could swap the bed for one with a mattress that inflates and deflates to adjust to the body and allow for Rhys to get into differing positions and not get too sore as a result. Lying down for 6 days might sound fun but its certainly not.
The nurses had just got Rhys sitting up as I arrived but he didn't feel like standing up, walking around the bed (being followed by two drip stands) and then sit down in the chair. For the last 6 days he's probably not moved more that 6 feet in total, let alone 6 feet in one go.
The solution was obvious. Since Rhys couldn't go to the chair then the chair had to come to Rhys. Standing up, taking one or two shuffling steps and sitting down was a lot easier to do.
With the bed swapped for the new one the trip back into bed was a equally as short.
The new mattress has taken some getting used to. Rhys has finally managed to get into a position where he's comfortable enough that with the aid of our friend morphine he's drifted off to sleep. With the help of one of the nurses we managed to get him in a bit more of an upright position. Its not surprising that he has fallen asleep though. The sun is shining outside and as much as the room is shaded it still feels like we're sat in a greenhouse.
Just before 11am Nanny and Grampy arrived to visit. Rhys was awake enough to be able to say hello but left most of the talking to Nanny. We sent them out to get something to eat at lunchtime which was well timed as Rhys then fell asleep. Obviously my company isn't exciting or riveting enough. Not surprising, I'd fall asleep if I had me to keep my company.
The rest of the day has been filled with bleeping medical equipment, a nasal gastric (NG) tube that is irritating Rhys' nose and lots of generally not being well. In fact for the first time in days we don't have a TPN meal of the day.
To show you how bad Rhys was feeling this evening he decided that he wanted me to stay in hospital with him overnight. Something that's not happened once since we've been up here this week. So my nice, comfortable double bed at CLIC House has been swapped for a pull-down hospital bed in a room filled with bleeping machines and a noise that borders on snoring.
Friday, 2 May 2014
Day 6 in a world of pain
Today the epidural came out. This was one of the big sources of pain relief for Rhys.
After the epidural had been removed Rhys was due some paracetamol and Tramadol painkillers but before this could happen the physiotherapist came in to get him to move about.
They tried to get Rhys to sit in the chair but while he was moving around the bed and reached a sitting position on the bed he became dizzy and so had to lie back down.
At this point Rhys started to be in pain but the nurses brought in the painkillers which helped somewhat. Enough to allow him to watch the movie Jack the Giantslayer on DVD.
Rhys says that there wasn't much killing of giants so its an OK film but not brilliant.
Rhys' summary of the film (Spoiler Alert - skip if you've not seen the film)
Jack's Dad tells a story of giants and beanstalks to Jack. The Queen is also telling the same story to her daughter. There's a crown that gives whoever wears it the power to control the giants.
Jack and the princess grow up and Jack gets given some magic beans on a market day. The same story is being told by some other guy to different people.
Jack goes home and his uncle who is looking after him throws the beans around the house. One of the beans gets wet and grows into a beanstalk which lifts the house up into the air and takes them to the land of the giants.
Then... well you'll have to watch the film to find out any more.
End of Spoiler Alert
Rhys finished watching the film before he started to be in real pain. Eventually one of the anesthetists came in discuss pain relief with him and it was agreed that he would be put on a morphine PCA. He had one of these when he was having his transplant. Back then there was a low level dose of morphine constantly going through his system and he had the ability to give himself a turbo boost every 5 minutes. This time the low level dose isn't going through, he just has the turbo boost.
Hopefully with the morphine he'll be able to do things soon if we can keep the pain under control.
Tonight's TPN meal is chicken tikka masala, naan bread, poppadoms, prawn crackers and sheesh kebabs.
After the epidural had been removed Rhys was due some paracetamol and Tramadol painkillers but before this could happen the physiotherapist came in to get him to move about.
They tried to get Rhys to sit in the chair but while he was moving around the bed and reached a sitting position on the bed he became dizzy and so had to lie back down.
At this point Rhys started to be in pain but the nurses brought in the painkillers which helped somewhat. Enough to allow him to watch the movie Jack the Giantslayer on DVD.
Rhys says that there wasn't much killing of giants so its an OK film but not brilliant.
Rhys' summary of the film (Spoiler Alert - skip if you've not seen the film)
Jack's Dad tells a story of giants and beanstalks to Jack. The Queen is also telling the same story to her daughter. There's a crown that gives whoever wears it the power to control the giants.
Jack and the princess grow up and Jack gets given some magic beans on a market day. The same story is being told by some other guy to different people.
Jack goes home and his uncle who is looking after him throws the beans around the house. One of the beans gets wet and grows into a beanstalk which lifts the house up into the air and takes them to the land of the giants.
Then... well you'll have to watch the film to find out any more.
End of Spoiler Alert
Rhys finished watching the film before he started to be in real pain. Eventually one of the anesthetists came in discuss pain relief with him and it was agreed that he would be put on a morphine PCA. He had one of these when he was having his transplant. Back then there was a low level dose of morphine constantly going through his system and he had the ability to give himself a turbo boost every 5 minutes. This time the low level dose isn't going through, he just has the turbo boost.
Hopefully with the morphine he'll be able to do things soon if we can keep the pain under control.
Tonight's TPN meal is chicken tikka masala, naan bread, poppadoms, prawn crackers and sheesh kebabs.
Thursday, 1 May 2014
Day 5 in a chair
Today has been a busy day with several visitors.
Jamie, one of the oncology nurses that used to look after Rhys when he was in for his A.L.L, was first to pop in. He was followed shortly after by Lizzie, who is one of the community nurses from Yeovil.
One of the smallest cannulas in his hands came out this afternoon. It had started to sting so the nurse took it out.
There's been a bit of pain in his abdomen but it seems to have eased because of the paracetamol that they gave Rhys.
The doctors had planned to remove the epidural that has been helping to keep any pain from the surgery under control. That has been delayed until tomorrow.
The big achievement for today though has been Rhys managing to get out of bed and into a chair. For the first time in days he is in an upright position. Its also the first proper chance to check to see if the operation really has improved the circulation to his feet which was one of the things that caused us to discover that he had the tumour.
We managed to check Rhys' feet when he was sitting in the chair. The left was still warm but the problematic right one was cold. Not ice cold like it has been but cold enough to be noticeable. Hopefully this will go away as Rhys' body recovers from the surgery. If not then we're going to be back to square one with regards to the circulation problem.
Tonight's TPN meal is going to be Pepperoni Pizza with Apple Pie Crumble and Custard for pudding.
Jamie, one of the oncology nurses that used to look after Rhys when he was in for his A.L.L, was first to pop in. He was followed shortly after by Lizzie, who is one of the community nurses from Yeovil.
One of the smallest cannulas in his hands came out this afternoon. It had started to sting so the nurse took it out.
There's been a bit of pain in his abdomen but it seems to have eased because of the paracetamol that they gave Rhys.
The doctors had planned to remove the epidural that has been helping to keep any pain from the surgery under control. That has been delayed until tomorrow.
The big achievement for today though has been Rhys managing to get out of bed and into a chair. For the first time in days he is in an upright position. Its also the first proper chance to check to see if the operation really has improved the circulation to his feet which was one of the things that caused us to discover that he had the tumour.
We managed to check Rhys' feet when he was sitting in the chair. The left was still warm but the problematic right one was cold. Not ice cold like it has been but cold enough to be noticeable. Hopefully this will go away as Rhys' body recovers from the surgery. If not then we're going to be back to square one with regards to the circulation problem.
Tonight's TPN meal is going to be Pepperoni Pizza with Apple Pie Crumble and Custard for pudding.
Wednesday, 30 April 2014
Day 4 in ICU and Ward
Another peaceful night. Blood pressure and heart rate are satifactory. One of the drugs has been stopped and the line that was being used to monitor his blood pressure has been removed. Its back to the old fashioned (and slightly less accurate way of monitoring blood pressure.
Rhys agreed to show you pictures of two of his friends from the last few days, so we have:-
Rhys agreed to show you pictures of two of his friends from the last few days, so we have:-
 |
| Lefty |
And
Late afternoon saw Rhys moved from ICU to Ward 31. The long journey between floors included a lovely wait for a lift because the single lift capable of taking a bed that the hospital has was being used by pretty much anyone. Unfortuantely of the 3 lifts in the hospital one of them is out of use. In the end one of us had to go by foot to level 6, get in the lift, ride it down to ground level and then stop people getting in so that we could have it just for Rhys' use. Eventually 2 nurses, Tracey and I, Rhys and his bed and a drip stand squeezed into the lift and made it to the ward.
Rhys' room is a lot more comfortable, he doesn't have to share it with anyone for starters. It has its own toilet and shower facilities (something that he is going to be grateful for when he's able to get around and get the area around the incision wet.
The view from his new room looks like this:-
Rhys has decided that tonight's dinner is gammon and chips and for pudding vanilla ice cream with sprinkles and chocolate flake.
So after having had a good wash, with lots of bleeping machines, drainage bags filling at a rate that's going to keep the nurses busy tonight, the day draws to a close.
Rhys is the most awake and lucid that he has been, to the point that he's making suggestions to the nurses regarding things that need to be done.
Doctor Rhys is finally in the house!
 |
| Righty |
Rhys' room is a lot more comfortable, he doesn't have to share it with anyone for starters. It has its own toilet and shower facilities (something that he is going to be grateful for when he's able to get around and get the area around the incision wet.
The view from his new room looks like this:-
Rhys has decided that tonight's dinner is gammon and chips and for pudding vanilla ice cream with sprinkles and chocolate flake.
 |
| Gammon and chips |
 |
| Vanilla Ice Cream, sprinkles and flake |
Rhys is the most awake and lucid that he has been, to the point that he's making suggestions to the nurses regarding things that need to be done.
Doctor Rhys is finally in the house!
And the name of the tumour is...
It seems that the tumour that Rhys had was about 15 cm in diameter which is about the size of a melon. So with this in mind and Rhysl love of Doctor Who I think we might just start refering to the tumour as River.
The thinking goes a bit like this:-
Melon can be shortened to Mel.
Mel is short for Melody.
Melody Pond (character) is the real name of River Song.
Which leads us to River.
Yes I know its a rubbish idea but its been a long week and I'm getting a bit punch drunk!!
Tuesday, 29 April 2014
Day 3 in and first full day in ICU
Rhys had a restful night and is drifting in and out of sleep today.
He is aware of everything that is going on, so much so that he has already vetoed the location for a line that the doctors need to put in if they can't get it into the other locations that they will try (just had the nurse looking after him pop in as I type this to let me know that it went fine and that they will be moving his bed from the room he's in to the main ward area). This line will allow them to feed him a substance called TPN which he had when he underwent his bone marrow transplant. TPN is a substance that will provide him with nutrition while allowing his body to recover from all the poking and prodding that it underwent during surgery.
He still has a way to go, his blood pressure needs to be brought up and his heartrate down (at the moment its at the level for someone doing physical exercise but they want it to be more at a resting level. All of this is a careful balancing act. As you adjust one thing to get it sorted something else changes.
He is either so used to all of the things that they are doing that he doesn't need them to explain them more than once or he is do fed up that he just doesn't want to know any more. Will ask when he's feeling up to chatting more.
One thing that we know is that, if not while on ICU then when on a normal ward, he will be able to access the Internet and Facebook so stay tuned for him getting in touch soon.
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