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.

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!!

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.

The Long Dark Breakfast Time of the Soul

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.

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.

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.

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.