After the op

Tracey asked if I'd updated the blog this week and since I hadn't I thought I had better get on with doing just that.

Last Sunday we came up to Bristol so that Rhys could be admitted to Ward 35 in preparation for his operation. He found himself in a four bed room rather than having a room to himself. This changed on Thursday when he got moved into a room in order that they could barrier nurse him due to finding out that he had C Diff, although it wasn't active fortunately.

On Monday his surgery was scheduled for between 8:30 and 8:45. The anesthetist and surgeon both popped in to see him beforehand. Sunday evening one of the doctors had put a cannula into his hands so he was all ready for going to theatre.

Tracey took Rhys down when the nurses came in and told us that they were ready for him. The operation was going to take around about 4 hours we'd been told, a lot shorter than last years marathon 8 hours.

With Rhys in theatre Tracey and I popped into Broadmead to grab some breakfast and have a wander around the shops. After popping into a couple of places I headed back to the hospital to wait rather than continue to wander aimlessly. Tracey cam back a short while after.

We sat around until we were surprised by Mr Rodgers, Rhys' surgeon, who came to tell us that Rhys was in the recovery room and that the operation had gone to plan and the tumour had been removed. It had been sent off to the pathology lab to find out whether all of the tumour had been removed or whether it was possible that some of it had been missed.

At the moment the news is that there is clean tissue all around what was removed so it looks like they have got it all. Last year the tumour went right up to the edges and there was no clean tissue so they were unsure whether everything had been removed and arranged radiotherapy to kill anything that had been missed.

It also looks like this is the same tissue as last year and not a new one.

Recovery has been slow but has been happening. Rhys has been rolling onto his side in order that the nurses can do things and to prevent bed sores. Rolling onto the side where he'd had his operation was difficult but as the week has progressed that has happened as well as being able to lift himself off the bed in order to change position and allow for washing since he can't get to the shower just yet.

Thursday and Friday saw Rhys get out of bed and walk short distances to sit in the chair. Thursday being a short sit out because it became to painful quite quickly; Friday being about 45 minutes before he decided he wanted to get into bed. Walking still needs a bit of support from another person just in case he gets wobbly and falls.

Eating has been a big issue, as usual. On Thursday he tried to eat some yoghurt and ice cream but this proved a struggle as it made him sick. However, he did manage to eat half a yoghurt over the course of an hour in the evening without being ill. Friday he managed to eat a Rich Tea biscuit but it did take all day.

The biggest issue that Rhys has had to face has been pain control. When he returned from surgery they had inserted an epidural. This kept his pain levels down but when he was rolling from his back to his side started to lose its effectiveness as the drugs went to the opposite side to where they had operated. This drove his pain upwards. The first time that this happened they on-call anesthetist ended up giving him Tramadol which eased things.

Wednesday evening the same thing happened but was much worse. Before Rhys' pain was once more under control 3 hours would pass. 3 hours in which his pain levels were off the chart. 3 hours during which he was brought to tears by the pain racking his body. Earlier he had had two cannula removed and a new one inserted. While he was in agony the doctor had to insert a new cannula which she managed first time, with Rhys holding his arm still to allow her to do it. An amazing feat considering.

Eventually the anesthetist turned up and it was decided that Rhys' epidural had failed and so he was switched to a morphine syringe pump, with a patient controlled button for extra shots when he needed it. Morphine was injected prior to the pump being attached and Rhys' pain dropped considerably, ending up at a very low level by the time the pump was connected. With the morphine connected the epidural was removed as it was of no use.

Thursday the pain team swapped the morphine over to Tramadol but after Rhys sat in the chair it was decided that he needed to go back on the morphine.

On Friday they once again swapped from morphine to Tramadol but this time with it being prescribed for more frequent use. His pain levels seemed to be ok, even after sitting out.

On Friday another cannula failed, leaving him with just one available for use.

As I mentioned earlier eating has been a big issue. On Friday Rhys started on TPN, a nutritional feed that he has had before when in hospital. Those of you that followed the transplant blog might remember the Gammon and chips, Chicken Tikka and Apple Crumble Pie that we used to make the TPN sound better. Last night Rhys was on Mixed Grill with Chicken Tikka Massala. Not being able to eat is going to be the factor that determines when he gets discharged. He's started to get mobile and the more he does the quicker he'll be ready to go home. Other things that he needs to do in order to be discharged he's already done. That just leaves eating and until he is eating what for him is normal then he's not going to be going far.

Friday also saw a visit from one of the neurosurgeons. This time the one that referred Rhys to the Eye Hospital for tests the other week. We discussed the surgery required to remove the meningioma. This has been postponed until Rhys has recovered from his current surgery but everything is in place. The people required have been identified and informed. The replacement for the area of his forehead has already been made based on scans that have been done of Rhys' skull. We're not sure but the replacement is either going to be ceramic or titanium.

The surgery itself is going to be the longest that Rhys has ever undergone. When I asked the neurosurgeon he said that Rhys would probably go into surgery at 9am and the operation would be finished by 7pm, a whopping 10 hours; 2 hours longer than last year's operation. Of course it could be quicker but it is going to be complicated surgery and more extensive that we originally understood.

Rhys should be in hospital for about 5 days, according to the surgeon. Yeah, really! This is Rhys we're talking about. Recovery at home afterwards will be a couple of weeks, with no heading of footballs allowed.

There's still a long way to go with all of this, but we are getting there and Rhys is on the road to being well again.

Thanks to everyone who has commented on our updates on Facebook. We really do appreciate you keeping us in your thoughts and prayers.

Can't Stomach This

When Rhys' meningioma operation was cancelled we knew that we'd be back in Bristol with 30 days.
Just over 2 weeks ago Rhys had a MRI scan on his stomach as follow up for the Peripheral Nerve Sheaf Tumour he had removed last year.
Last Monday we received a phone call asking us to go into the hospital to see Rhys' consultant. The results of the scan had been reviewed by Bristol and the report had come back.
Chris told us that they had found a tumour, about an inch long, that needed to be removed and takes priority over the meningioma.
In the middle of the week we received a phone call from Bristol Children's Hospital with details about when Rhys would be admitted to the hospital and have his operation.
Today we have to go up to Bristol. Rhys has to be on Ward 35, which he likes the idea of, by 6pm. Once again we're staying at Sam's House.
Rhys' operation is scheduled for sometime tomorrow, at the moment we don't know what time but if last year's experience is anything to go by his surgeon will most likely want to get as early a start as possible.
At the moment we don't know what the follow-up to the surgery will be. Radiotherapy? Not sure.

Like last year we'll post updates as and when we can both here and on Facebook.

Home Again!

Well that worked out well.
Tracey and Rhys made their way into Ward 38 for 7:30am and sat in the playroom waiting to find out if a bed was available.
After a while the anesthetist arrived and went over everything with him. They then had to wait for Mr Edwards the surgeon.
At 9 I arrived in the hospital and found them still waiting. Another family were also waiting for a bed.
Tracey nipped out to get some breakfast while Rhys and I sat there.
The play specialist arrived and began tidying the room. As Rhys is interested in becoming a play specialist in the future they chatted about what he's doing and what he needs to do to become one.
Tracey returned and it was my turn to grab some breakfast.
As I was on my way back Tracey texted me to let me know that Mr Edwards had been in and that Rhys' operation was cancelled. There were no beds available due to the hospital being bust and there being a lot of emergency admissions. It would also take a number of hours to perform Rhys' operation so it was better to cancel and reschedule.
The operation has to be performed within 30 days of being cancelled it seems and due to the amount of time needed to complete it is likely to be at least 2 weeks away.
Its frustrating for all of us. Making arrangements for time off work, rearranging appointments, arranging accommodation, traveling to and from Bristol, preparing for serious surgery and then for it not to happen.

But we're back home and just have to wait until the new appointment comes through. 

Here we go again!

Back in Bristol so that Rhys can have the operations to remove the meningioma.
What a day its been!
Tracey drove us from Yeovil to Bristol. A nice steady trip and something she'd not done before.
After having got up very early it was a race between Rhys and I to see who could doze off the quickest so that the other would have to act has "second SatNav".
Naturally the teenager won!
A short visit with Rhys' Great Uncle Bulgaria and it was time to head for the hospital.
A change of driver and it was time for me to get us across Bristol to Sam's House.
A short, and amazingly quiet drive later and we were unpacking the car and putting our things into, yes you've guessed it, Room 10. The one we've stayed in on out last few trips to Bristol (bone marrow transplant, surgery to remove the tumour and radiotherapy after the tumour had been removed).
Having unpacked we made our way into town to grab a bite to eat at Tracey's favourite pub, Rhys' too!
Lunch over Tracey and Rhys made their way to the hospital as he had an appointment for a CT scan at 3pm. I caught up with them just as he'd finished.
Returning to the X-Ray department reception we discovered the MRI scan he also needed would be delayed due to an emergency. With that in mind we decided to pop to Ward 38 where he was supposed to be admitted and see if they had a bed for him. We'd tried to confirm that there was a bed for him, something we'd done several times over the course of the day. Unfortunately we had no luck and so Rhys and I returned to the X-Ray department while Tracey waited on the ward to find out what was happening.
Rhys' scan was delayed for ages and it was after 5pm before we found ourselves in the room with the MRI scanner, Rhys inside the machines and me at the foot of it watching him.
It is a really boring experience just watching so it must be even worse if you are having the scan and have to lie perfectly still.
Prior to the scan Rhys had bloods taken. The nurse that came do them looked at us and asked if he'd been on one of the wards at Frenchay. Rhys was so little at the time that he wouldn't remember it clearly but I said "yes, to have his tonsils removed." After all these years she remembered us.
Returning to Ward 38 we sat around for some time until a nurse confirmed that there were no beds available and he would have to go to Sam's. We would have to ring the people that deal with allocation of beds at 6:30am on Thursday morning to see where they had a bed available for him.
Another early morning!
Leaving the hospital we returned to Sam's and had a bite to eat. Rhys, as he does when we stay here, disappeared to the teenagers' room to play pool, something he thoroughly enjoys doing when we are here, or at CLIC House.
Tracey spent a bit of time when we arrived at Sam's catching up with how various people were. Lots were doing OK, but as we have experienced far too many time over the years, a number have sadly passed away, their illnesses having directly been the cause or having allowed something else to do that job.
As I sit writing this the only sounds are from the various fridge/freezers, the click of pool balls hitting each other and the clunk of balls falling in pockets. Oh, and Tracey and Rhys chatting. All else is quiet.


Thursday morning update: We rung about a bed just after 6:30.  There are still no beds available, its hoped that when day surgery opens they will be able to get Rhys a bed in there. In the meantime Rhys and Tracey have to go to Ward 38 for 7:30 and wait around in the playroom until something is sorted. We think that Rhys will be going into the High Dependency Unit following surgery so he should at least have a bed there until they can sort out a bed on another ward.

So with a click of my fingers I'll sign off for now, further updates in due course.

Edited: because my proofreaders spotted two tiny mistakes. Huh!!!

Home Run

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.

 

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.

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!

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.

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.