So 6 weeks of radiotherapy have come to an end. Bags and cases packed and placed in the car. Room cleared out.
Goodbyes said to all the people we've got to know, adults and youngsters alike. Staff and residents both.
One more drive from Bristol to Yeovil and its finally time to rest and to have a proper summer break before started at college.
Sunday 24 August 2014
Sunday 3 August 2014
We're all going to the Zoo
Bristol Zoo exactly.
Last Sunday was Tracey's birthday. She had wanted to go somewhere and as Rhys' Aunty Annette and his cousin's Jess and Charlotte were down at Nanny and Grampy's it was easy to arrange for them to come over to Bristol for the day.
An early start for us from Yeovil still saw us arrive at Sam's nearly an hour after Annette and the girls.
After unpacking and grabbing a drink we piled into the cars and headed up to Clifton and Bristol Zoo.
Although there wasn't a queue outside the zoo the car park was already full by the time we arrived and so we parked up on the Downs before walking down to the Zoo. For once we had very little trouble parking.
For such a warm day it was really surprising that there wasn't that much of a queue to get in and once in the place was busy but not overly packed.
We took our time as we weren't in a hurry and by the time we had to leave had seen just over half of the animals.
We started off with the flamingos before looking for lions, who seemed to be hiding away. Fruit bats were next before we reached the reptile house via some very big tortoises and friends.
Rhys and I went in to have a look at the snakes, frogs, lizards, crocodiles and other reptiles. Everyone else went and sat on the grass to enjoy the sunshine. Can't think why!
Now I'm sure that I'll get in trouble for the next set of pictures but there are no pictures of snakes!!!
After the reptile house we visited the spiders and creepy crawlies and then the aquarium.
A bit of lunch was called for so we stopped off at the cafe and grabbed a bite to eat.
The afternoon began with monkeys. Lots of monkeys.
At one point we got separated from Rhys' Aunty and cousins. While we waited for them to find us we stopped off to listen to the talk about the lemurs. It was really crowded in the enclosure and took a while to get in and out as the doors were in an airlock type configuration where you had to close on door before the other could be opened. Stops the little rascals escaping.
Our next stop was the gorilla enclosure. At the point that we reached them they were fast asleep because of the heat. When we passed through a bit later they were moving about a bit.
The last couple of stops were the penguins and seals.
The seals were wonderful. Especially the really big one that kept barking at everyone.
Eventually it was time to start making our way to the exit as we needed to leave. Before we did we stopped to get ice-cream. Rhys and I popped to an ice-cream van to get a couple of 99s (ice cream cone with a chocolate flake for those that don't know what this is).
Rhys' cousins decided when we returned that they wanted to sample our ice-creams. After allowing Jess to have a couple of licks of mine I made the mistake of handing it to her and well...
Our trip ended with a visit to the shop to buy some souvenirs but not before we paid one last visit to the lion enclosure where there was a bit more activity.
Rhys had a lovely day with Aunty Annette and the girls. The zoo wasn't crowded so was a great place to go on a hot, sunny day.
Last Sunday was Tracey's birthday. She had wanted to go somewhere and as Rhys' Aunty Annette and his cousin's Jess and Charlotte were down at Nanny and Grampy's it was easy to arrange for them to come over to Bristol for the day.
An early start for us from Yeovil still saw us arrive at Sam's nearly an hour after Annette and the girls.
After unpacking and grabbing a drink we piled into the cars and headed up to Clifton and Bristol Zoo.
Although there wasn't a queue outside the zoo the car park was already full by the time we arrived and so we parked up on the Downs before walking down to the Zoo. For once we had very little trouble parking.
For such a warm day it was really surprising that there wasn't that much of a queue to get in and once in the place was busy but not overly packed.
We took our time as we weren't in a hurry and by the time we had to leave had seen just over half of the animals.
We started off with the flamingos before looking for lions, who seemed to be hiding away. Fruit bats were next before we reached the reptile house via some very big tortoises and friends.
Rhys and I went in to have a look at the snakes, frogs, lizards, crocodiles and other reptiles. Everyone else went and sat on the grass to enjoy the sunshine. Can't think why!
Now I'm sure that I'll get in trouble for the next set of pictures but there are no pictures of snakes!!!
After the reptile house we visited the spiders and creepy crawlies and then the aquarium.
A bit of lunch was called for so we stopped off at the cafe and grabbed a bite to eat.
The afternoon began with monkeys. Lots of monkeys.
The last couple of stops were the penguins and seals.
The seals were wonderful. Especially the really big one that kept barking at everyone.
Eventually it was time to start making our way to the exit as we needed to leave. Before we did we stopped to get ice-cream. Rhys and I popped to an ice-cream van to get a couple of 99s (ice cream cone with a chocolate flake for those that don't know what this is).
Rhys' cousins decided when we returned that they wanted to sample our ice-creams. After allowing Jess to have a couple of licks of mine I made the mistake of handing it to her and well...
Our trip ended with a visit to the shop to buy some souvenirs but not before we paid one last visit to the lion enclosure where there was a bit more activity.
Rhys had a lovely day with Aunty Annette and the girls. The zoo wasn't crowded so was a great place to go on a hot, sunny day.
Friday 25 July 2014
Week 3 of radiotherapy
Its been a while since we posted anything with regards to Rhys' treatment. We're now into the third week of radiotherapy.
On Monday we were set to come up to Bristol when we received a phone call from the radiographers to tell us that the machine had broken down and that they were cancelling appointments. Rhys will have another appointment added on at the end of the 6 weeks to make up for it. With an extra day in Yeovil we decided to spend it relaxing and doing some of the things we'd wanted to do like go to the cinema.
With the sun shining in the sky we headed to Cineworld to watch How To Train Your Dragon 2.
There were less than a dozen people at the showing we went to, not surprising as it was in the middle of the afternoon.
We enjoyed the film, Rhys liked it and thought it was better than the first, I prefer the first as there was more going on with the storyline in that one.
Tuesday we returned to Bristol. On arrival at the room we discovered a note to say that there had been a phone call letting us know the radiotherapy machine was fixed and we could come in for the appointment anyway. Oh well!
On Monday we were set to come up to Bristol when we received a phone call from the radiographers to tell us that the machine had broken down and that they were cancelling appointments. Rhys will have another appointment added on at the end of the 6 weeks to make up for it. With an extra day in Yeovil we decided to spend it relaxing and doing some of the things we'd wanted to do like go to the cinema.
With the sun shining in the sky we headed to Cineworld to watch How To Train Your Dragon 2.
There were less than a dozen people at the showing we went to, not surprising as it was in the middle of the afternoon.
We enjoyed the film, Rhys liked it and thought it was better than the first, I prefer the first as there was more going on with the storyline in that one.
Tuesday we returned to Bristol. On arrival at the room we discovered a note to say that there had been a phone call letting us know the radiotherapy machine was fixed and we could come in for the appointment anyway. Oh well!
Last weekend was incredibly stressful and heartbreaking for the family.
On Saturday we traveled to Portsmouth as Rhys' Grampa, Tracey's Dad, had been taken into hospital. We arrived at the hospital in the afternoon and went to his bed on the Medical Assessment Unit. Rhys spent a bit of time at the bedside in between going to the restaurant and for short walks with various close family members.
Eventually Rhys and I had to leave to check into a hotel for the night as it wasn't good for him to stay at the hospital overnight.
On Saturday we traveled to Portsmouth as Rhys' Grampa, Tracey's Dad, had been taken into hospital. We arrived at the hospital in the afternoon and went to his bed on the Medical Assessment Unit. Rhys spent a bit of time at the bedside in between going to the restaurant and for short walks with various close family members.
Eventually Rhys and I had to leave to check into a hotel for the night as it wasn't good for him to stay at the hospital overnight.
We rang the local Marriot, no rooms.
Then we rang Premier Inn, no rooms in Portsmouth or Petersfield but they did have a room in Aldershot, a good 30 miles from Portsmouth. Um, pass.
Finally we managed to get a room through Ibis. Since we used to live in Portsmouth and have visited there a number of times since moving to Yeovil I knew where the Ibis was. Leaving everybody else at the hospital, Rhys and I got into our car and headed south into deepest, darkest Pompey.
Pulling up at the hotel we found a parking space and went into reception.
We explained that we had a room booked and who we were. "Sorry, we've not got any reservations in that name. Could you be booked into our Ibis Budget hotel?"
Quick phone call by the receptionist and yes, we're at the wrong hotel. Back in the car and 15 minutes later we'd parked near the correct hotel and were checking in at reception.
The room was fairly basic but good enough for the two of us to get some sleep.
The following morning we checked out as early as we could and headed back to the hospital.
Tracey's Dad was still on the ward but later was moved to a private room. Rhys went in an saw him, he was quite peaceful.
We had breakfast before settling down to wait in the reception area. Every so often I'd pop to the room to see how things were or Rhys and I would go for a walk.
Eventually just before 3pm Tracey's Dad passed away. Rhys was in reception while the rest of us were in the room. It was very dignified and he will be missed so much by all of us, especially his daughters.
Rhys has been incredibly strong. Considering everything he had been through this year with biopsies, the operation to remove the tumour, knowing he has the meningioma and now the radiotherapy, he held himself together. He was also able to give comfort to the rest of us.
The coming weeks are going to be equally stressful, emotional and painful. Hopefully Rhys will continue to find the strength from wherever he finds it to get him through them.
Monday 7 July 2014
40 something, 50 something
Rhys has his first session of radiotherapy yesterday morning and we go to see Dr Cameron about the results of the kidney scan.
We arrived at Sam's House Sunday evening and unpacked. As soon as he could Rhys disappeared to the teenager's room to play pool. He's certainly making himself at home there. We saw him on and off during the remainder of the night as he went exploring the place.
There are a lot of other family's staying at Sam's and we met a few of them in the kitchen/dining area on our floor. We only saw one child, which is different to last time we stayed there. There doesn't appear to be any other teenagers staying at Sam's so it looks like Rhys might have the teenager's room to himself.
Dr Cameron came to see us just before Rhys' had his radiotherapy and told us that the scan had shown that both Rhys' kidney's were working fine, one was functioning at 40 something percent and the other at 50 something. Although they can't guarantee the effect of the radiotherapy on the kidneys they will be using a lower dose and aiming to avoid one of the kidneys as much as possible.
The rest of the day the morning was spent wandering around Ikea and doing a food shop so that Rhys and Tracey have something to eat.
Tracey and Rhys went into Cabots Circus in the afternoon after I left to make my way home. Almost as soon as I'd left Rhys started to complain about a pain in his side and so Tracey and him ended up at Oncology Daybeds so that he could be checked over. A couple of samples to check for signs of infection and he was sent back to Sam's with some painkillers which has eased the pain by the time I spoke with them about 7.
Day 2 of radiotherapy today and hopefully Rhys will pop into Area 61, the teenage cancer unit, this afternoon and join in with their discussion group so that he has something to do otherwise this could be a long 6 weeks for him.
We arrived at Sam's House Sunday evening and unpacked. As soon as he could Rhys disappeared to the teenager's room to play pool. He's certainly making himself at home there. We saw him on and off during the remainder of the night as he went exploring the place.
There are a lot of other family's staying at Sam's and we met a few of them in the kitchen/dining area on our floor. We only saw one child, which is different to last time we stayed there. There doesn't appear to be any other teenagers staying at Sam's so it looks like Rhys might have the teenager's room to himself.
Dr Cameron came to see us just before Rhys' had his radiotherapy and told us that the scan had shown that both Rhys' kidney's were working fine, one was functioning at 40 something percent and the other at 50 something. Although they can't guarantee the effect of the radiotherapy on the kidneys they will be using a lower dose and aiming to avoid one of the kidneys as much as possible.
The rest of the day the morning was spent wandering around Ikea and doing a food shop so that Rhys and Tracey have something to eat.
Tracey and Rhys went into Cabots Circus in the afternoon after I left to make my way home. Almost as soon as I'd left Rhys started to complain about a pain in his side and so Tracey and him ended up at Oncology Daybeds so that he could be checked over. A couple of samples to check for signs of infection and he was sent back to Sam's with some painkillers which has eased the pain by the time I spoke with them about 7.
Day 2 of radiotherapy today and hopefully Rhys will pop into Area 61, the teenage cancer unit, this afternoon and join in with their discussion group so that he has something to do otherwise this could be a long 6 weeks for him.
Sunday 6 July 2014
Time to Decamp
Suitcases are packed. Food and other necessities are in bags. Time for Rhys to head to Bristol so that he can start his radiotherapy.
Last Friday we had to go up for the planning session. All 15 minutes of it.
He had to lie on the bed while they took some measurements to make sure that everything would be lined up correctly when they start. He had at least one X-ray and then it was all done.
We were a bit frustrated because we'd expected to see the doctor but that wasn't the case.
Unfortunately that means that we still don't know what the results of the kidney scan were so we have no idea what the state of Rhys' kidneys will be at the end of the 6 weeks. The radiographer was going to contact the doctor to let her know that we wanted to speak with her. We'll be chasing that up tomorrow morning.
On Friday Tracey rang up CLIC House to confirm that we had a room and let them know that we'd be picking up the keys. She got told that although we did have a room booked that had been crossed out. Some phone calls by the staff and we found out that we were in Sam's House. The same place that we stayed when Rhys had his bone marrow transplant.
One of the staff gave us a tour so that we knew where everything was. Then she showed us to our room.
And would you believe it...
we are in the exact same room that we stayed in when he had his transplant.
6 years on and we are back in the same place. At least this time he gets to be and out and about a bit more. Who knows he might even manage to see the balloon festival and not just see the balloons flying by in the morning and evening which is what we've done every other time he's been in Bristol during treatment.
Last Friday we had to go up for the planning session. All 15 minutes of it.
He had to lie on the bed while they took some measurements to make sure that everything would be lined up correctly when they start. He had at least one X-ray and then it was all done.
We were a bit frustrated because we'd expected to see the doctor but that wasn't the case.
Unfortunately that means that we still don't know what the results of the kidney scan were so we have no idea what the state of Rhys' kidneys will be at the end of the 6 weeks. The radiographer was going to contact the doctor to let her know that we wanted to speak with her. We'll be chasing that up tomorrow morning.
On Friday Tracey rang up CLIC House to confirm that we had a room and let them know that we'd be picking up the keys. She got told that although we did have a room booked that had been crossed out. Some phone calls by the staff and we found out that we were in Sam's House. The same place that we stayed when Rhys had his bone marrow transplant.
One of the staff gave us a tour so that we knew where everything was. Then she showed us to our room.
And would you believe it...
we are in the exact same room that we stayed in when he had his transplant.
6 years on and we are back in the same place. At least this time he gets to be and out and about a bit more. Who knows he might even manage to see the balloon festival and not just see the balloons flying by in the morning and evening which is what we've done every other time he's been in Bristol during treatment.
Friday 27 June 2014
A long, long, long day.
Up by 6am, out the door by 7am. Stuck in Glastonbury traffic by 7:30. Bliss!
That was Wednesday morning.
Fortunately we managed to get passed Shepton Mallet with its very long traffic queues and managed to make good time on the rest of our journey, arriving at the vascular clinic at Bristol Royal Infirmary with literally minutes to spare for the 9:15 appointment.
The last time we'd gone up to Bristol for an appointment we'd left at 7:30 and got to the hospital on time but with the chance to park at Cabot's Circus. Allowing an extra half an hour would be a good idea we thought and it turned out it was.
After our mad rush from the car park to the clinic we found ourselves sitting around for half an hour waiting for the doctor. With a CT Scan planned for 10am and a long walk to get to the Oncology hospital we knew we'd not be able to wait any longer so told the nurse we'd have to go. Of course she couldn't allow us to do that without the doctor's permission so we found ourselves waiting while she checked only for her to return and usher us into the doctor.
Well he was brilliant and really friendly. He examined Rhys' feet which is the reason we were there, found a strong pulse but also noted the difference in temperature. After a few more questions he told Rhys that he would arrange for a repeat of an ultrasound that Yeovil hospital had performed but this time to be done in Bristol while he is up there having his radiotherapy. Just to give Rhys something to do. He also explained that Rhys could be suffering from something called Raynaud's which affects the circulation in the hands and feet. Mr A to Z Medical Dictionary ticks off another condition!
Leaving the vascular clinic we made our way through the maze of corridors inside the BRI and arrived at the oncology hospital. Rhys' CT scan went well and he emerged from the scanner room with a series of tattoos on his stomach to allow them line up the machines when he has his radiotherapy. It was a bit disappointing that the tattoo was only tiny dots and not the full blown bowling ball and pin that we told Nanny about afterwards but you can't have everything.
After the scan Jax took Rhys up to the teenage oncology unit Area 61 and showed him around. When he's having his radiotherapy he will have access to the unit and be able to join in the activities that are put on there. If there was any worry about him spending lots of time at CLIC House playing pool then those doubts disappeared when we saw the unit. I suspect that he will be spending a lot of time there, especially since they have a table football game and a pool table. I'm beginning to think he might not want to come back home to Yeovil with all of this to look forward to.
Lunch followed at Mum's favourite pub, the Bay Horse with Rhys choosing a rather tasty burger and chips.
The trip back was a lot easier as we bypassed Glastonbury by using the motorway. It was a long day and very tiring but things are finally moving getting towards the last stages of his treatment so that he can enjoy a couple of weeks recovering from the radiotherapy before his next big adventure, college.
That was Wednesday morning.
Fortunately we managed to get passed Shepton Mallet with its very long traffic queues and managed to make good time on the rest of our journey, arriving at the vascular clinic at Bristol Royal Infirmary with literally minutes to spare for the 9:15 appointment.
The last time we'd gone up to Bristol for an appointment we'd left at 7:30 and got to the hospital on time but with the chance to park at Cabot's Circus. Allowing an extra half an hour would be a good idea we thought and it turned out it was.
After our mad rush from the car park to the clinic we found ourselves sitting around for half an hour waiting for the doctor. With a CT Scan planned for 10am and a long walk to get to the Oncology hospital we knew we'd not be able to wait any longer so told the nurse we'd have to go. Of course she couldn't allow us to do that without the doctor's permission so we found ourselves waiting while she checked only for her to return and usher us into the doctor.
Well he was brilliant and really friendly. He examined Rhys' feet which is the reason we were there, found a strong pulse but also noted the difference in temperature. After a few more questions he told Rhys that he would arrange for a repeat of an ultrasound that Yeovil hospital had performed but this time to be done in Bristol while he is up there having his radiotherapy. Just to give Rhys something to do. He also explained that Rhys could be suffering from something called Raynaud's which affects the circulation in the hands and feet. Mr A to Z Medical Dictionary ticks off another condition!
Leaving the vascular clinic we made our way through the maze of corridors inside the BRI and arrived at the oncology hospital. Rhys' CT scan went well and he emerged from the scanner room with a series of tattoos on his stomach to allow them line up the machines when he has his radiotherapy. It was a bit disappointing that the tattoo was only tiny dots and not the full blown bowling ball and pin that we told Nanny about afterwards but you can't have everything.
After the scan Jax took Rhys up to the teenage oncology unit Area 61 and showed him around. When he's having his radiotherapy he will have access to the unit and be able to join in the activities that are put on there. If there was any worry about him spending lots of time at CLIC House playing pool then those doubts disappeared when we saw the unit. I suspect that he will be spending a lot of time there, especially since they have a table football game and a pool table. I'm beginning to think he might not want to come back home to Yeovil with all of this to look forward to.
Lunch followed at Mum's favourite pub, the Bay Horse with Rhys choosing a rather tasty burger and chips.
The trip back was a lot easier as we bypassed Glastonbury by using the motorway. It was a long day and very tiring but things are finally moving getting towards the last stages of his treatment so that he can enjoy a couple of weeks recovering from the radiotherapy before his next big adventure, college.
Monday 23 June 2014
And so it begins ...
Well the news we've been waiting for has finally arrived.
On Wednesday Rhys will be having another CT scan in preparation for starting his radiotherapy.
On July 4th, yes Independence Day in the USA, he has a radiotherapy planning appointment in Bristol and then on the 7th July will be starting his radiotherapy.
6 weeks of being zapped for a couple of minutes and several hours of playing pool each Monday to Friday.
Weekends will be spent back in Yeovil doing those things he normally does.
The 6 weeks ends just in time for him to have a couple of weeks to recover in time for the start of college.
I think he's looking forward to his time in Bristol. If the excited yelling and shouting "we're going to Bristol, we're going to Bristol" that was going on in the background when Tracey rang to let me know the news is anything to go by.
On Wednesday Rhys will be having another CT scan in preparation for starting his radiotherapy.
On July 4th, yes Independence Day in the USA, he has a radiotherapy planning appointment in Bristol and then on the 7th July will be starting his radiotherapy.
6 weeks of being zapped for a couple of minutes and several hours of playing pool each Monday to Friday.
Weekends will be spent back in Yeovil doing those things he normally does.
The 6 weeks ends just in time for him to have a couple of weeks to recover in time for the start of college.
I think he's looking forward to his time in Bristol. If the excited yelling and shouting "we're going to Bristol, we're going to Bristol" that was going on in the background when Tracey rang to let me know the news is anything to go by.
Thursday 12 June 2014
Oops
Apparently Rhys was supposed to be in Bristol today having his kidney scan, or so the phone call this afternoon to ask us why we'd not turned up for the appointment told us.
Nothing was on the calender, nothing in diaries and no letter pinned to the noticeboard in the kitchen.
We couldn't think why we'd not heard about this appointment. Then the light went on.
While Rhys was in hospital recovering from his tumour operation and we were waiting for the results of the tests on the tumour to see if they'd got everything we had received a phone call asking us to go and see the radiotherapy consultant. We'd been puzzled by that as we'd not been told that the results had come back. At the same time we received a letter notifying us that Rhys had an appointment for a renal scan.
The letter was taken up to Bristol and we asked the nurses if they could find out why he had the appointment. We never heard any more and never saw the letter again either.
It would appear that once again the NHS was being super efficient as the letter must have been the appointment for Rhys' kidney scan which the doctors had figured out he'd need before radiotherapy could begin. This must have all been sorted out before we'd been told that he'd need radiotherapy. Not knowing what was happening at the time we dismissed the appointment as someone getting dates wrong for one of the numerous scans that he was having at the time. We know better know!
Still its not a total disaster as we have a new appointment next week and hopefully this can be combined with some of the other activities that will be needed as part of the planning for his treatment.
Nothing was on the calender, nothing in diaries and no letter pinned to the noticeboard in the kitchen.
We couldn't think why we'd not heard about this appointment. Then the light went on.
While Rhys was in hospital recovering from his tumour operation and we were waiting for the results of the tests on the tumour to see if they'd got everything we had received a phone call asking us to go and see the radiotherapy consultant. We'd been puzzled by that as we'd not been told that the results had come back. At the same time we received a letter notifying us that Rhys had an appointment for a renal scan.
The letter was taken up to Bristol and we asked the nurses if they could find out why he had the appointment. We never heard any more and never saw the letter again either.
It would appear that once again the NHS was being super efficient as the letter must have been the appointment for Rhys' kidney scan which the doctors had figured out he'd need before radiotherapy could begin. This must have all been sorted out before we'd been told that he'd need radiotherapy. Not knowing what was happening at the time we dismissed the appointment as someone getting dates wrong for one of the numerous scans that he was having at the time. We know better know!
Still its not a total disaster as we have a new appointment next week and hopefully this can be combined with some of the other activities that will be needed as part of the planning for his treatment.
Wednesday 11 June 2014
And the future unveils itself
Today Rhys had an appointment at Yeovil hospital with Steve the consultant from Bristol that has been dealing with him and his tumours. As a result we have a clear idea of what the immediate future holds.
As the lump on his head is a meningioma there isn't an urgency to deal with it. In fact the plan for treating that is to leave it alone and just monitor it. No surgery and no radiotherapy at the moment unless further scans show that it has grown. If that is the case then it will require radiotherapy rather than surgery as the latter would require the removal of a sizeable chunk of his forehead during the operation (probably for the best really as I'm sure the temptation to ask if they could replace it with something transparent so we can make sure that his brain is still there and working at times would be far too much to resist).
The other lumps that they found inside his cheeks, the different scans he had showed things on different sides of the face and not on the same side, will also be monitored but aren't worrying anyone at the moment.
Which leaves us with the radiotherapy on his abdomen. Once he's had a kidney scan to check which of his kidneys is the best to not nuke during treatment Rhys will be beginning his 6 weeks of radiotherapy in Bristol. With luck everything, apart from the monitoring, will be done and dusted by the August so that he has a few weeks to recuperate before beginning college.
We chatted about a few other things but the most important of these is that Rhys was given the all clear to go ten pin bowling, although they didn't say that he'd be able to play brilliantly but you can't have everything!
As the lump on his head is a meningioma there isn't an urgency to deal with it. In fact the plan for treating that is to leave it alone and just monitor it. No surgery and no radiotherapy at the moment unless further scans show that it has grown. If that is the case then it will require radiotherapy rather than surgery as the latter would require the removal of a sizeable chunk of his forehead during the operation (probably for the best really as I'm sure the temptation to ask if they could replace it with something transparent so we can make sure that his brain is still there and working at times would be far too much to resist).
The other lumps that they found inside his cheeks, the different scans he had showed things on different sides of the face and not on the same side, will also be monitored but aren't worrying anyone at the moment.
Which leaves us with the radiotherapy on his abdomen. Once he's had a kidney scan to check which of his kidneys is the best to not nuke during treatment Rhys will be beginning his 6 weeks of radiotherapy in Bristol. With luck everything, apart from the monitoring, will be done and dusted by the August so that he has a few weeks to recuperate before beginning college.
We chatted about a few other things but the most important of these is that Rhys was given the all clear to go ten pin bowling, although they didn't say that he'd be able to play brilliantly but you can't have everything!
Monday 2 June 2014
And the results are in
Yesterday we received a call from Father Christmas to tell us that the results of the biopsy were back. Why Father Christmas? Well the news was the best present we could have.
The biopsy showed that the lump on his head is a meningioma as we'd been told at first and not something worse which is what the doctors were worried it night be.
This means that we are back on track with the treatment as the radiotherapy can now go ahead. Treatment of the lump will still be needed but that can happen after the remains of the tumour in his abdomen have been dealt with. So we are looking forward to another trip to Bristol for some more scans and then Rhys can have the radiotherapy.
Once the radiotherapy is over then Rhys will have to have the lump removed and possibly some radiotherapy on his head but that it weeks away at the moment.
A little voice has just called out from their room to tell me to let you know that he's had to pop into hospital this week for some more tests to try and figure out why he's having some pains. This is something he's had for a couple of weeks now but yesterday morning also resulted in stomach pain that resulted in his sleeping on the couch from 4:30am to 8:30am because he wasn't able to sleep lying flat in bed.
The same little voice has also pointed out that he's ticked off another meal from his list. He had his chicken tikka masala yesterday evening.
The biopsy showed that the lump on his head is a meningioma as we'd been told at first and not something worse which is what the doctors were worried it night be.
This means that we are back on track with the treatment as the radiotherapy can now go ahead. Treatment of the lump will still be needed but that can happen after the remains of the tumour in his abdomen have been dealt with. So we are looking forward to another trip to Bristol for some more scans and then Rhys can have the radiotherapy.
Once the radiotherapy is over then Rhys will have to have the lump removed and possibly some radiotherapy on his head but that it weeks away at the moment.
A little voice has just called out from their room to tell me to let you know that he's had to pop into hospital this week for some more tests to try and figure out why he's having some pains. This is something he's had for a couple of weeks now but yesterday morning also resulted in stomach pain that resulted in his sleeping on the couch from 4:30am to 8:30am because he wasn't able to sleep lying flat in bed.
The same little voice has also pointed out that he's ticked off another meal from his list. He had his chicken tikka masala yesterday evening.
Saturday 31 May 2014
Number 1
Its been a busy week for Rhys with plenty of visitors and joining his friends at the bowling club in Taunton.
Monday was our last day in Wales. The morning started with a hearty breakfast before returning to Nanny's to see everyone.
An impromptu photo call happened in the garden with his two cousins.
On the way back from Nanny's Rhys got to see his Great Aunt and Uncle. It was a pleasant couple of hours chatting with everyone.
Tuesday saw Gran, Grandad and Amy come to visit which was really nice for Rhys as they stayed overnight. It also saw another of the meals ticked off his list, the Apple Crumble Pie which Gran cooked. It was a bit of a challenge as we had no recipe to use but Gran is such a brilliant cook that she managed to pull it off.
It certainly taste yummy with custard and ice cream.
The rest of the week was pretty quiet. Saturday saw Rhys make the trip to Taunton to play ten pin bowling.
A couple of games and a nice little present to remind him to hit the king pin when he bowls ensued.
Monday was our last day in Wales. The morning started with a hearty breakfast before returning to Nanny's to see everyone.
An impromptu photo call happened in the garden with his two cousins.
On the way back from Nanny's Rhys got to see his Great Aunt and Uncle. It was a pleasant couple of hours chatting with everyone.
Tuesday saw Gran, Grandad and Amy come to visit which was really nice for Rhys as they stayed overnight. It also saw another of the meals ticked off his list, the Apple Crumble Pie which Gran cooked. It was a bit of a challenge as we had no recipe to use but Gran is such a brilliant cook that she managed to pull it off.
It certainly taste yummy with custard and ice cream.
The rest of the week was pretty quiet. Saturday saw Rhys make the trip to Taunton to play ten pin bowling.
A couple of games and a nice little present to remind him to hit the king pin when he bowls ensued.
Sunday 25 May 2014
It never rains but it pours
In this case quite literally.
Today we paid a surprise visit to Rhys' Nanny and Grampy in Wales. At the same time we were able to catch up with his Aunty Netty, Uncle Paul and his cousins Lottie and Jess.
An earlty start saw us leave Yeovil at 7am and have a quiet, if wet, drive to South Wales.
We had planned for Rhys to knock on the door and surprise everyone, apart from his aunt who knew we were coming. In the end, despite doing his best impression of a commando and crouch walking up to their front gate he was spotted by Nanny.
Everyone was really happy to see him, especially his cousins.
The morning was spent catching up.
We'd planned to go out during the afternoon but the weather decided to interfere with the plans.
Instead of our planned visit to the Welsh showcaves we ended up at an indoor children's play area. Several hours of climbing up and down the equipment followed, which was plenty of exercise for Rhys and the rest of us, some more limber than others when it comes to negotiating the equipment.
On return to Nanny's we had some cake before we headed to our hotel for the night to get ready to go out for dinner.
Dinner was nice. Rhys chose a mixed grill without the egg, peas, mushrooms and grilled tomato, which left just the chips, onion rings and meat. Tracey opted for ribs and I went for a Thai red curry. Rhys' cousin Lottie even had lettuce (with a lemon and herb dressing) which she liked.
Some problems with getting a taxi to get Nanny and everyone home almost finished off the evening, although everyone did eventually get home.
Our evening in the pub did end when Rhys almost died of embarassment while Mum discussed certain of his health issues on her mobile in the middle of the pub.
Saturday 24 May 2014
3 meals down
When he was in hospital after the tumour and was on the TPN Rhys was coming up with different ideas for what each day's batch could be.
Now that he is home we've started to actually have those meals.
So far he has had his full English breakfast, the cheese topped potatoes with rump and fillet steak. Yes he did actually have a fillet steak and half a rump steak and he ate it all.
The other meal that he's ticked off was the pepperoni pizza with garlic bread.
Still to come are homemade chicken tikka massala and the apple crumble pie.
Now that he is home we've started to actually have those meals.
So far he has had his full English breakfast, the cheese topped potatoes with rump and fillet steak. Yes he did actually have a fillet steak and half a rump steak and he ate it all.
The other meal that he's ticked off was the pepperoni pizza with garlic bread.
Still to come are homemade chicken tikka massala and the apple crumble pie.
Friday 23 May 2014
Rhys' Random Thoughts - Number 1
While cleaning his teeth in his hospital room's bathroom yesterday evening.
"Yvonne" exploded from his lips.
Who you ask is Yvonne?
She was the play specialist on the BMT ward when Rhys had his bone marrow transplant 6 years ago today.
Yup.
6 years ago today, at the time I write this (10:15pm) Rhys was 45 minutes into his transplant. The marrow solution hit his Hickman line at 9:35pm.
For some reason while he was in the bathroom yesterday he blurted out Yvonne's name. Next time we go up to Bristol we will have to see what has happened to her.
"Yvonne" exploded from his lips.
Who you ask is Yvonne?
She was the play specialist on the BMT ward when Rhys had his bone marrow transplant 6 years ago today.
Yup.
6 years ago today, at the time I write this (10:15pm) Rhys was 45 minutes into his transplant. The marrow solution hit his Hickman line at 9:35pm.
For some reason while he was in the bathroom yesterday he blurted out Yvonne's name. Next time we go up to Bristol we will have to see what has happened to her.
One step closer ...
... to knowing if there is a brain in that head of his.
Yesterday was a long and hungry one for Rhys.
After rushing up to Bristol the night before and finally getting to bed after midnight he was up early.
As he was having surgery he wasn't allowed anything to eat. Even fluids changed from juice/squash to plain water by the early hours.
We'd been told that he would be about 3rd on the list for theatre. This would mean that he would be having the biopsy about 9am.
After an early morning drive from Yeovil back to Bristol, including seeing parts of Somerset I would not have expected because of a major incident on the A37, I arrived in Bristol in time for Rhys to go down to theatre, and to keep Tracey company, while we waited for the operation to finish and Rhys to be moved to recovery.
By the time I arrived Rhys had been told that he wouldn't be going down until late morning.
Ha!
First Rhys had to have a CT scan to allow them to perform the biopsy in the best possible way. This ended up being at 11:30.
If you're around Rhys be prepared for him to glow in the dark or interfere with radio signals and electrical equipment due to the amount he has been blasted with radiation, magnetic fields and the other forms of energy that have been used to explore his body.
Finally at just around 1:30 he went to theatre. The procedure didn't take too long and he was soon in recovery and then back on the ward in his room.
We bumped into a few people from previous times in Bristol. Both Jamie and Jax have spoken with us.
Now we have to play a waiting game. The doctors have said it could take anywhere from 4 days to 3 weeks to get the results because they need to dissolve the bone surrounding the tissue they removed before they can examine it. Since Rhys' treatment all hinges on the results of the biopsy he can't start the radiotherapy to destroy any of the tumour in his abdomen that might not have been removed.
Various doctors and consultants popped in after the operation. Rhys had to stay in overnight so that he could go to the dental hospital to have xrays of his teeth and the area where the Neurofibroma had been spotted. This has happened and it looks like this might in fact be nothing more than the remnants of the root of a tooth he had removed when he had his braces fitted.
The plan going forward is to hopefully go home today and then come back up for more scans and a discussion with his consultant when the biopsy results are back. At that point we will know what the long term plan for Rhys' treatment is.
Wednesday 21 May 2014
Welcome to the house of fun
What a insane, fun life we lead.
5pm this evening and our phones are ringing. Its Bristol Children's hospital. Could we get up to the hospital this evening so that Rhys cqn be admitted to hospital in order that tomorrow morning they can do a biopsy on the meningioma to confirm what the lump actually is before they start the radiotherapy. If it's not what they thought it was then the treatment plan changes.
4 hours later, after a mad packing and dinner eating session we are at the hospital waiting for the surgeon to come and talk to us about the operation and get consent forms signed.
Since all of this has happened at short notice we've got problems with accommodation. Only one of us can stay with us while the other has to go home.
Its certainly been a fun evening, mad dash to Bristol, into room and then down to A&E because we have to have gone through them to be admitted to the ward. I assume that is because we've come up to hospital outside the normal hours for going onto a ward.
One thing is for certain, we are living in interesting time.
Thursday 15 May 2014
Does our house smell or something?
He's only been home two days and he can't take it anymore.
Rhys is back in hospital, Yeovil this time. Hopefully it will just be an overnight stay.
This morning he was complaining about some pains so after checking with the hospital we took him to the hospital for them to check him out. After taking some samples for testing they sent him home at lunchtime.
By late afternoon he was in pain once again and so we took him back in on the advice of the hospital. After a quick examination the doctors decided to keep him in overnight.
Dinner was sausage and chips from Palmers in town.
With food out of the way we were treated to another visit from the doctor who asked if he wanted to stay in or go home. Rhys decided to stay in overnight.
Hopefully by tomorrow they might have the results of the cultures that they were trying to grow so could have a better idea of what is causing the pain. If its nothing serious and they've got the pain under control then he might even come back home.
We might have to invest in one of these in order to encourage him to stay at home for more than 48 hours.
Rhys is back in hospital, Yeovil this time. Hopefully it will just be an overnight stay.
This morning he was complaining about some pains so after checking with the hospital we took him to the hospital for them to check him out. After taking some samples for testing they sent him home at lunchtime.
By late afternoon he was in pain once again and so we took him back in on the advice of the hospital. After a quick examination the doctors decided to keep him in overnight.
Dinner was sausage and chips from Palmers in town.
With food out of the way we were treated to another visit from the doctor who asked if he wanted to stay in or go home. Rhys decided to stay in overnight.
Hopefully by tomorrow they might have the results of the cultures that they were trying to grow so could have a better idea of what is causing the pain. If its nothing serious and they've got the pain under control then he might even come back home.
We might have to invest in one of these in order to encourage him to stay at home for more than 48 hours.
Tuesday 13 May 2014
Day something or other...
We've honestly started to lose track of what day we're on. That's what spending time in hospital, traveling between Yeovil and Bristol, wandering around the shops day in day out, does to you.
Still today is an important one.
Today is the day that Rhys was finally discharged from hospital and was able to return home to Yeovil.
He's still got a long way to go but being home is going to do him the world of good.
He might even manage to show is face at a venue where people throw large round objects at bottle shaped objects and try to knock them down.
Still today is an important one.
Today is the day that Rhys was finally discharged from hospital and was able to return home to Yeovil.
He's still got a long way to go but being home is going to do him the world of good.
He might even manage to show is face at a venue where people throw large round objects at bottle shaped objects and try to knock them down.
Saturday 10 May 2014
Day 14 and the future begins to reveal itself
The last few days have been interesting!
The NHS has proved that for a large organisation it can be surprisingly efficient. Too efficient in fact.
We've been waiting for the results of analysing the tumour that was removed by Mr Rogers (we've finally found out how he spells his name after spelling it Rodgers in previous posts).
On Thursday I received a phone call while at work from the Hematology and Oncology department to inform us that they'd been asked to make an appointment for Rhys with one of the consultants in the Teenager and Young Adult clinic on Monday. Confusion ensued.
As Rhys is in hospital we couldn't understand why the consultant couldn't come over to see him instead of making him go to them. We also couldn't understand why they wanted to see him and the person that rung couldn't give us any more details. Checking with the doctors there was nothing to indicate that any results had come back from the tests. Even the nurses couldn't figure out why we'd been asked to go to the clinic.
We did eventually find out that when youngsters reach Rhys' age that they do get migrated from the children's clinic to the teenage and young adult clinic. It looked like a case of bad timing.
But no!
Friday saw us receive some news from Steve, Rhys' consultant, which cleared up everything.
The results of the tests had come back and Steve had been consulting with one of the oncology doctors.They'd agreed a way forward with his treatment. Before Steve could talk to us and explain what was planned the NHS managed to be super efficient and offer us an appointment but which left us confused.
The results of the tests done on the tumour showed that although there was clear tissue at the edges there were several areas where the tumour went right to the edge of what they were looking at, the implication of this is that its possible that microscopic amounts of tumour could have been left behind. Amounts too small to be seen by the naked eye. Its entirely possible that all of the tumour has been removed and that the surgeon was incredibly precise. However, to ensure that anything that remains is destroyed then Rhys will have to have a course of radiotherapy. We don't know the full details yet but its going to be over a period of 6 weeks from Monday to Friday, which means he'll be home for weekends and staying at CLIC House during the week.
Of course for Rhys that's not going to be such a hardship. The radiotherapy isn't going to be easy but staying somewhere that has a pool table is something that he's looking forward to. Now if only they had a ten pin bowling alley so he could keep his hand in.
The NHS has proved that for a large organisation it can be surprisingly efficient. Too efficient in fact.
We've been waiting for the results of analysing the tumour that was removed by Mr Rogers (we've finally found out how he spells his name after spelling it Rodgers in previous posts).
On Thursday I received a phone call while at work from the Hematology and Oncology department to inform us that they'd been asked to make an appointment for Rhys with one of the consultants in the Teenager and Young Adult clinic on Monday. Confusion ensued.
As Rhys is in hospital we couldn't understand why the consultant couldn't come over to see him instead of making him go to them. We also couldn't understand why they wanted to see him and the person that rung couldn't give us any more details. Checking with the doctors there was nothing to indicate that any results had come back from the tests. Even the nurses couldn't figure out why we'd been asked to go to the clinic.
We did eventually find out that when youngsters reach Rhys' age that they do get migrated from the children's clinic to the teenage and young adult clinic. It looked like a case of bad timing.
But no!
Friday saw us receive some news from Steve, Rhys' consultant, which cleared up everything.
The results of the tests had come back and Steve had been consulting with one of the oncology doctors.They'd agreed a way forward with his treatment. Before Steve could talk to us and explain what was planned the NHS managed to be super efficient and offer us an appointment but which left us confused.
The results of the tests done on the tumour showed that although there was clear tissue at the edges there were several areas where the tumour went right to the edge of what they were looking at, the implication of this is that its possible that microscopic amounts of tumour could have been left behind. Amounts too small to be seen by the naked eye. Its entirely possible that all of the tumour has been removed and that the surgeon was incredibly precise. However, to ensure that anything that remains is destroyed then Rhys will have to have a course of radiotherapy. We don't know the full details yet but its going to be over a period of 6 weeks from Monday to Friday, which means he'll be home for weekends and staying at CLIC House during the week.
Of course for Rhys that's not going to be such a hardship. The radiotherapy isn't going to be easy but staying somewhere that has a pool table is something that he's looking forward to. Now if only they had a ten pin bowling alley so he could keep his hand in.
Day 13 and some real food
Rhys has finally managed to start eating real food. Nothing exciting but its a start.
Breakfast was a choice between ice cream and yoghurt. A hard choice but Rhys opted for strawberry yoghurt.
Later on in the day he had some vanilla ice cream.
Its not much but its soft and very easy to digest.
Nanny and Grampy came to visit so he had a bit of company and managed to make his way to The Snug to play on the Xbox.
The day ended with watching Superman The Return.
Breakfast was a choice between ice cream and yoghurt. A hard choice but Rhys opted for strawberry yoghurt.
Later on in the day he had some vanilla ice cream.
Its not much but its soft and very easy to digest.
Nanny and Grampy came to visit so he had a bit of company and managed to make his way to The Snug to play on the Xbox.
The day ended with watching Superman The Return.
Thursday 8 May 2014
Day 12 and a breath of fresh air
For the first time since the operation Rhys has been able to get the area where he has stitches wet. So it was bath time!
Although his room has a shower its not the most sensible idea for him to use it just in case he slips and hurts himself.
However, the ward does have a really nifty bath that goes up and down and has hoists and everything to allow them to get patients in and out.
Rhys also had to have a scan which meant he had to been injected with a radioactive dye. Apparently it means that he will be radioactive until Friday afternoon. So if you are anywhere in the Bristol area and see an eery glow in the night sky its might be Rhys.
Although his room has a shower its not the most sensible idea for him to use it just in case he slips and hurts himself.
However, the ward does have a really nifty bath that goes up and down and has hoists and everything to allow them to get patients in and out.
Rhys also had to have a scan which meant he had to been injected with a radioactive dye. Apparently it means that he will be radioactive until Friday afternoon. So if you are anywhere in the Bristol area and see an eery glow in the night sky its might be Rhys.
Wednesday 7 May 2014
Days 10 and 11 - a mile in his bare feet (or maybe slippers)
Day 10 saw Rhys take the longest walk he's managed since before the operation. Up until yesterday the extent of his travels have been the one or two shuffling steps that have got him from bed to chair and back. Yesterday saw him walk from one side of the bed all the way around to the other side to sit in a chair. Tiring stuff as he dozed off while sitting in it.
His nutrition for the day hit a bit of a snag. Normally the nurses come between 7pm and 9 to remove his old TPN and put up the new one. Last night the TPN didn't materialise which means a good 12 hours without any nutrition going in. Not a problem for most people as we don't tend to eat in the middle of the night (OK midnight snacks excluded). For Rhys though his body has had a constant flow of nutrients since they put him on it. So by the time his latest batch of TPN is up it looks like it will be, wait for it, a bacon sarnie.
Day 11 was more walking. Even further as Rhys was temporarily freed from the captivity of his drip stands. The first trip was just outside the room and into the "garden" room. This is a large space with a glass roof that has comfortable chairs, tables, a jukebox and an air hockey table.
The second was to The Snug which is at the other end of the ward and contains a large screen TV and an Xbox, which Rhys took advantage of to play a game or two.
Of course while Rhys was doing this Mum was taking advantage and snapping some pictures for posterity (and the blog).
Oh, and those are special surgical socks that he's wearing to help stop blood clots from forming after the operation and while he's recovering and lying in bed.
His nutrition for the day hit a bit of a snag. Normally the nurses come between 7pm and 9 to remove his old TPN and put up the new one. Last night the TPN didn't materialise which means a good 12 hours without any nutrition going in. Not a problem for most people as we don't tend to eat in the middle of the night (OK midnight snacks excluded). For Rhys though his body has had a constant flow of nutrients since they put him on it. So by the time his latest batch of TPN is up it looks like it will be, wait for it, a bacon sarnie.
Day 11 was more walking. Even further as Rhys was temporarily freed from the captivity of his drip stands. The first trip was just outside the room and into the "garden" room. This is a large space with a glass roof that has comfortable chairs, tables, a jukebox and an air hockey table.
The second was to The Snug which is at the other end of the ward and contains a large screen TV and an Xbox, which Rhys took advantage of to play a game or two.
Of course while Rhys was doing this Mum was taking advantage and snapping some pictures for posterity (and the blog).
Oh, and those are special surgical socks that he's wearing to help stop blood clots from forming after the operation and while he's recovering and lying in bed.
Monday 5 May 2014
Day 9 in a chair (reprise)
Sunday night was much better than Saturday. Rhys managed to get a lot more sleep although we were still awake early.
Some early exercise was called for though because the cannula that was put in yesterday had come out. Although not in an obvious way. It was only when Rhys realised that the bed was wet that we figured out that there was a problem with the cannula and when the nurse came in to check it one touch and it dropped away from Rhys arm.
With wet bedsheets we had the opportunity for Rhys to get out of his bed and into a chair for a short while. I wasn't sure that he would want to but he did. It was only for about 5 minutes but it was something and he wanted to do it.
The cannula was replaced later and once again Rhys' freedom to move about was curtailed. Not that it stopped him much. He was in an out of bed like a yo-yo. In between Rhys moved himself around on the bed a number of times to get himself more comfortable, something that even the day before required a lot of help.
Steve, one of the consultants popped in to see Rhys and find out how he was doing. While we were talking he mentioned that we hope to have the results of the tests done on the tumour this week. We should find out as a result whether or not all of the tumour really was removed. Hopefully all of it has been removed so that he doesn't have to have radiotherapy.
Mum returned to Bristol in the afternoon and brought Gran and Grandad to visit. Throughout their visit Rhys wasn't the most chatty but then having four people in the room, who aren't doctors or nurses, at the same time is the largest number he's had in a week. Besides by the time they arrived Rhys was about halfway through 4 hour Power Rangers Samurai marathon on DVD.
The next few days Mum has the pleasure of Rhys' company and recovery. I'm sure that they will have a fine time. She just has to avoid accidentally blocking people's phone numbers on her mobile, especially the home number!!
Some early exercise was called for though because the cannula that was put in yesterday had come out. Although not in an obvious way. It was only when Rhys realised that the bed was wet that we figured out that there was a problem with the cannula and when the nurse came in to check it one touch and it dropped away from Rhys arm.
With wet bedsheets we had the opportunity for Rhys to get out of his bed and into a chair for a short while. I wasn't sure that he would want to but he did. It was only for about 5 minutes but it was something and he wanted to do it.
The cannula was replaced later and once again Rhys' freedom to move about was curtailed. Not that it stopped him much. He was in an out of bed like a yo-yo. In between Rhys moved himself around on the bed a number of times to get himself more comfortable, something that even the day before required a lot of help.
Steve, one of the consultants popped in to see Rhys and find out how he was doing. While we were talking he mentioned that we hope to have the results of the tests done on the tumour this week. We should find out as a result whether or not all of the tumour really was removed. Hopefully all of it has been removed so that he doesn't have to have radiotherapy.
Mum returned to Bristol in the afternoon and brought Gran and Grandad to visit. Throughout their visit Rhys wasn't the most chatty but then having four people in the room, who aren't doctors or nurses, at the same time is the largest number he's had in a week. Besides by the time they arrived Rhys was about halfway through 4 hour Power Rangers Samurai marathon on DVD.
The next few days Mum has the pleasure of Rhys' company and recovery. I'm sure that they will have a fine time. She just has to avoid accidentally blocking people's phone numbers on her mobile, especially the home number!!
Day 8 - we're playing for NG land
Has anyone seen a letter E we seem to have one missing from the title and a space has appeared in the name of a national football team.
Rhys' nasal gastric (NG) tube has been causing him some problems. Its been irritating him so much that he's been coughing and gagging and bringing stuff up, stuff that his body does need to get rid of but is unable without a bit of external help.
Overnight and during the morning it had been really bad with the NG tube, the doctors didn't want to remove it because it would cause other problems.
In the end the decision was made to remove the tube and replace it with a thinner tube that might not irritate as much.
With the tube out and me away at CLIC House getting some things so that I could stay in overnight and Rhys decides to show that there is still a glimmer of humor in him, even in the middle of everything.
Rhys: "Where are you?"
Me: "At CLIC House."
Rhys: "Are you in the shower?"
Me: "Not really, I don't usually answer the phone when I'm in there. I'm just finishing up and then I'll be back to the hospital."
Rhys: "The nurses have taken my tube out, they are going to put a smaller one in when you get back."
Me: "OK."
Rhys: "Don't rush back! Take your time."
So I dawdled a little bit.
On return we took advantage of the brief period of freedom that Rhys had without the NG tube to give him a wash, clean his teeth and give him a bit of a refreshing clean up. He even allowed a picture of his to be taken.
Although his eyes are closed this is a much nicer picture than the one of him with his eyes open.
Eventually the replacement tube was fitted. The replacement tube still causes him some problems but the liquid that the nurses are draining through it looks more of a normal colour. There's still a lot of it so the tube has to stay in until there is very little being drained. One thing that has changed is that he doesn't seem to be gagging as much with the new tube. Its still an annoyance but he's not coughing and spluttering anywhere near as much as he was with the old tube. In fact Rhys thinks that removing the old tube, giving him an hour without the tube and inserting the new tube is one of the reasons that the fluid is coming out looking so much better.
One of Rhys' cannula finally gave up the ghost today and had to be removed. A new one was fitted but it's in the opposite arm so he has lost a bit of the freedom he did have.
Rest continues to be the order of the day with lots of dozing with some shifting of position. Its slow but sure progress that's for sure.
Late afternoon the nurse that was looking after him popped in to tell us that he was being moved to Ward 35, which is the adolescent ward. Its a new ward on level 7. As much as they wanted to keep in on the ward there was no guarantee that they would be able to keep Rhys in a room of his own and he might have to be moved onto one of the four bed rooms. Something that might not have been appropriate with the number of babies that were on the ward.
35 is a really nice ward that is designed with the needs of adolescents in mind. There's plenty of spaces for them to chill with other patients, individual rooms and no restrictions on where hot drinks can be taken, parents can also eat in the rooms.
Rhys' room has its own bathroom with shower, flat screen TV and even a small wardrobe.
For the first time since the operation Rhys has been awake enough to enjoy watching a DVD all the way through, although we did end up starting it in one ward and finish watching it in the other.
Pain levels have been pretty good with only a few boosts of morphine needed. Even the irritation from the NG tube seems to have settled down somewhat.
The day closed with watching the end of a couple of films on TV.
Rhys' nasal gastric (NG) tube has been causing him some problems. Its been irritating him so much that he's been coughing and gagging and bringing stuff up, stuff that his body does need to get rid of but is unable without a bit of external help.
Overnight and during the morning it had been really bad with the NG tube, the doctors didn't want to remove it because it would cause other problems.
In the end the decision was made to remove the tube and replace it with a thinner tube that might not irritate as much.
With the tube out and me away at CLIC House getting some things so that I could stay in overnight and Rhys decides to show that there is still a glimmer of humor in him, even in the middle of everything.
Rhys: "Where are you?"
Me: "At CLIC House."
Rhys: "Are you in the shower?"
Me: "Not really, I don't usually answer the phone when I'm in there. I'm just finishing up and then I'll be back to the hospital."
Rhys: "The nurses have taken my tube out, they are going to put a smaller one in when you get back."
Me: "OK."
Rhys: "Don't rush back! Take your time."
So I dawdled a little bit.
On return we took advantage of the brief period of freedom that Rhys had without the NG tube to give him a wash, clean his teeth and give him a bit of a refreshing clean up. He even allowed a picture of his to be taken.
Although his eyes are closed this is a much nicer picture than the one of him with his eyes open.
Eventually the replacement tube was fitted. The replacement tube still causes him some problems but the liquid that the nurses are draining through it looks more of a normal colour. There's still a lot of it so the tube has to stay in until there is very little being drained. One thing that has changed is that he doesn't seem to be gagging as much with the new tube. Its still an annoyance but he's not coughing and spluttering anywhere near as much as he was with the old tube. In fact Rhys thinks that removing the old tube, giving him an hour without the tube and inserting the new tube is one of the reasons that the fluid is coming out looking so much better.
One of Rhys' cannula finally gave up the ghost today and had to be removed. A new one was fitted but it's in the opposite arm so he has lost a bit of the freedom he did have.
Rest continues to be the order of the day with lots of dozing with some shifting of position. Its slow but sure progress that's for sure.
Late afternoon the nurse that was looking after him popped in to tell us that he was being moved to Ward 35, which is the adolescent ward. Its a new ward on level 7. As much as they wanted to keep in on the ward there was no guarantee that they would be able to keep Rhys in a room of his own and he might have to be moved onto one of the four bed rooms. Something that might not have been appropriate with the number of babies that were on the ward.
35 is a really nice ward that is designed with the needs of adolescents in mind. There's plenty of spaces for them to chill with other patients, individual rooms and no restrictions on where hot drinks can be taken, parents can also eat in the rooms.
Rhys' room has its own bathroom with shower, flat screen TV and even a small wardrobe.
For the first time since the operation Rhys has been awake enough to enjoy watching a DVD all the way through, although we did end up starting it in one ward and finish watching it in the other.
Pain levels have been pretty good with only a few boosts of morphine needed. Even the irritation from the NG tube seems to have settled down somewhat.
The day closed with watching the end of a couple of films on TV.
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