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As promised last weekend here is the latest news. Rhys came home from Bristol yesterday. He still has to go to and from Bristol every Monday and every other Thursday but he is most definitely back in Yeovil. There is still a long way to go but we are starting to get back to a normal, or as normal as its going to get with dozens of boxes of medical equipment filling the house and lots of drugs to be administered 3 times a day. I’ll do a post with a list of all the drugs he has to take and what they are for over the weekend to give you and idea how much he rattles.

He is going to be spending September getting used to being back at home and then will be starting to have home tutoring. He wont be going back to school for some time as his immune system still has a long way to go to be able to cope with being in large crowds of people. So no going to those places I know he would like to get back to for a while.

That doesn’t mean that he wont be able to see any of his friends but it will be on more of a one-to-one (ish) basis.

Back In Yeovil

Saturday 30^th August (Day 99)

Arrived at the hospital for 10am in order to give blood. Despite intending to pay a short visit and then leave Rhys has to wait around until his blood results had come back. Michelle, his consultant, came in and saw him just after noon and we discussed coming back in on the Sunday for 8 hours of intravenous phosphate.

Finally at 1pm we got out of the hospital and were able to get away from Bristol for the rest of the day.

Heading south we made our way to Yeovil and home.

Tracey was away visiting the Great Dorset Steam Fair near Blandford so it was just the two of us.

Although we only had a few hours at home for Rhys to reacquaint himself with his home we did manage to meet up with a few people and say hello.

Eventually we had to head back to Bristol and another night at Sam’s. Not many more of those to go though.

Check in later in the week and find out more.

Sad news about Adrian Sudbury

Some of you who have been visiting this blog for a while will remember a post about Adrian Sudbury, a journalist working for the Huddersfield Examiner.

Adrian’s prognosis was not good but he campaigned to raise the awareness of the need for bone marrow donors by making it compulsory for schools to give a 40 minute talk to all second year sixth form students about why it is important to think about donating blood, bone marrow and organs.

Sadly Adrian has passed away.

The following link will take you to his blog:

http://baldyblog.freshblogs.co.uk/2008/08/adrian-passes-away.html

101 days project nearly at a close

Just a short post.

Today, Saturday 16^th August, is day 86 following Rhys’ transplant. In two weeks time we will have reached day 100 following the transplant, by then we should have been discharged from hospital and be at Sam’s House full time.

The latest batch of pictures will have been uploaded by the end of today so that we can include one of yesterday’s jaunt into the outside world.

We are beginning preparations for eventually getting out of hospital.

Over the last week we’ve been setting up Rhys’ feed pump and connecting him to it as when he eventually gets home he will still have to have feeds for a while. They’ve even provided him with a back pack so he can carry it around with him when he is out and about.

Yesterday we received the first delivery from Homeward the company that supplies everything. Despite the fact that they normally only deliver to your home they were persuaded to deliver it to work. I now understand why they deliver to the house. By the time the car was filled with the 21 boxes that made up the delivery there wasn’t much room to fit anything else in. Our kitchen looks like we could start up a mini hospital.

Doctor Rhys, as we call him in hospital, has had to put up with mum and dad doing his observations when the nurses are a bit busy to help them out. So if you need the your blood pressure, SATS or temperature taken you know where to come.

On Tuesday we had a meeting with the hospital staff as things were getting a bit confusing as to what the plan was with regards to Rhys’ treatment. The feeling that we were getting was that they were trying to push Rhys out to Sam’s House but we didn’t think he was ready for that. Following the meeting we felt a lot more positive about things.

Rhys’ adenovirus is at a much lower level than it was, latest count puts it just over 2000. His liver function count is also lower. The doctors have reduced the amount of steroids he is on and have also taken him off one other drug. This means that his liver should start to recover from the battering it has taken, which in turn means that the magnesium and phosphate transfusions that he has been having on a regular basis should start to reduce. It will take time for this to happen but eventually he should be able to get away with tablets and not transfusions, the phosphate one takes 6 hours over night at the moment.

Yesterday Rhys spent from lunchtime until 9pm out of hospital and managed the furthest distance yet from the hospital in the last 3 months. He was able to go all the way to Auntie Jackie and Uncle Dave’s. He had the run of the place without having to worry about passing the adenovirus onto anyone who might suffer badly from it, like the other patients staying at Sam’s House.

On the way to Jackie and Dave’s we stopped off at Gran and Grandad’s for a couple of hours. The majority of the time there was spent watching CBBC, something that isn’t available at the hospital. The time at Jackie and Dave’s was spent on the laptop and sleeping, same thing as he would have done at the hospital and Sam’s but at least the scenery is better at Jackie’s.

Even the weather played fair for once and it remained dry, if a little windy, until Rhys was safely back in the hospital at which point the heavens opened and the rain descended.

Even though bacon sarnies are still of the menu at the moment Rhys managed half a chicken breast and a roast potato for dinner. Yaaaaaaaaay Rhys!

Today, Sunday, we’re hoping to get out again at lunchtime. The morning has seen a blood transfusion which started between 6 and 7am, a time when most people (including us) are asleep, and the intravenous magnesium. A feed through the nasogastric feed is due at 11am for an hour then freedom for the rest of the day until late this evening.

Another trip outside

Now that Rhys has made it to non-isolation he has the chance to see a few extra faces. So far he has seen Karen and Abigail, Grandad, Grampa and Grampy.

Being in non-isolation has also meant that while he has access to our car, he can get out to Sam’s which is what happened yesterday (Saturday 2^nd August). The idea being to allow him the opportunity for a shower.

After over two months of being limited to a single room in the hospital, a large amount of which has been spent lying in bed, his muscles aren’t as strong as they used to be. Our accommodation at Sam’s is on the top floor and the lift only goes to the first floor. By the time Rhys had walked the flight of stairs to the top floor and made it to our room he was worn out and needed a rest on the bed.

Eventually suitably recovered he was able to make his way to the bathroom. Rather than the anticipated shower, due to worrying that his legs were unsteady, he opted for a bath.

He admitted that this first proper bath in such a long period of time felt really good and the chance to just sit for a while and soak was something he enjoyed.

As non-isolation is so quiet at the moment, there are only two or three patients in here everyone else is either coming in on a daily basis or is in isolation, there is the chance that one of the bathrooms can be made available for his use only. If its the one closest to the room then it only has a shower so the weekend trips to Sam’s for a bath will be a regular feature until he is discharged.

One other benefit of being in non-isolation is that it was possible to bring back Mary a stuffed toy cat that he has had for years and which had to be left behind when Rhys went into isolation because everything had to be cleaned which would have meant a trip through the washing machine and tumble dryer. Ok, Ted had the experience of that back on day 6 anyway but I bet it wasn’t a pleasant one.

Tracey’s 39th Birthday Afternoon Out With Rhys

On the 27^th July at 2 o’clock Rhys went to Clifton Downs to have a picnic.

Tracey had gone to Sam’s to help her mum with preparing the picnic. Rhys and myself were at the hospital waiting for him to finish the medication he was receiving on the drip and also for a phone call to let us know everyone else had arrived. Eventually the call came.

We went downstairs and straight out to the car. We were under strict instructions not to stop and talk to anyone on the way out or back in.

We got in the car and drove up to Sam’s and saw family. We saw Gran, Grandad, Aunty Jackie, Uncle Dave, Grampa, Amy and Tracey.

The three cars were packed with the picnic stuff and everyone followed our car to Clifton Downs.

The Downs were heaving there were cars parked along the roads. There were even cars parked on the grass verge. Finding enough space to park all three cars we pulled up onto the verge and followed other peoples example. Fortunately right next to where we parked was a secluded grassy area.

We unpacked the cars, put up a gazebo and the folding picnic chairs and sat down to enjoy the wonderful weather. Rhys was a bit quiet.

Tracey opened her birthday presents, chocolates and wine from Amy and Gareth, a CD from Mary and Brian and her main present a laptop computer from everyone.

Rhys had a brief game of football then sat down to rest. He had his own specially made sandwiches (one Marmite and one jam). He ate both sandwiches plus a packet of crisps. It was very warm and so Rhys drank constantly from the bottle of squash we had brought from the hospital. It was great to see him out of hospital for the first time in over 2 months.

After everyone else had had something to eat Rhys briefly went to try to fly a kite we had in the car. Unfortunately there wasn’t enough wind around where we were and so it didn’t fly for long.

After this we Tracey was given her birthday cake and we had a group photo of everyone that was there.

We began to pack up. While doing so a chap in a council van turned up and began given tickets to the cars in front of ours. I went over and asked if we were parked illegally to be told that we were breaking council bye-laws. We continued to pack up and when he approached our car I told him we were just packing up to leave. He let us off at that point and went and gave a ticket to the car behind our group.

When we got back to Sam’s we offloaded the bits that needed to stay there and Rhys and I returned to the hospital. We were just in time for Rhys to have a shower before he had to begin having his evening medication.

A short while later Tracey arrived back at the hospital and began to use her laptop.

All in all it was a really good day. The weather was fantastic and Rhys was able to get out of hospital to spend some time with Tracey. Hopefully spending time outside the hospital will be a regular thing.

Day 68 Update

Rhys is out of isolation and back into the non-isolation part of the hospital.

First visitors to see him in his new room were Karen and Abigail.

Next step Sam’s.

Write Your Own Post

As was suggested in a recent comment our tags are a bit random at times. So we are going to have a write your own post entry.

Read the tags and work out what you think the post should be.

Leave an appropriate message to the people referred in the comments.

ps. the tags should have been in a specific order but they’ve been randomised but not by me. It was easy to work out the post when I typed the tags in, honest.

Day 54 in the Little Brother House

Well its day 54 (or day 61 if you count the time from the first day we pitched up in non-isolation for conditioning).

Its been a roller-coaster ride but there is light at the appearing at the end of the tunnel.

Yesterday Rhys managed one half of a piece of toast in the morning and some new potatoes in the evening.

Rhys came off his TPN today so that is two less pumps going overnight, and one less to bleep at 3am in the morning. However, this does mean that he has to eat more solid food. Zoe, the dietician came in today and we talked about what he could eat. Having gone down the list we were given there isn’t a lot that he likes and so he is now allowed plain chicken, turkey, fish fingers and crisps. Not all at the same time of course but bit by bit over the next couple of days.

So far today though we have scratched the chicken and turkey off the list. The chicken because it was a piece of leg and not breast, Rhys doesn’t like leg meat, the turkey because it came covered in gravy which he didn’t like. Tomorrow is therefore fish fingers day which means crisps can be included on the menu from Saturday.

Rhys has also been given some special fruit drinks to help supplement his diet. He’s opted for the apple flavour. Yesterday we tried mixing them with apple juice and also water but they still weren’t drinkable. Having discussed this with Zoe today we mixed it with flat lemonade and it became much more drinkable. Even better, as fizzy drinks were off the menu, the lemonade didn’t upset his stomach.

Strange thing about this juice drink is that it smells just like Scrumpy. Now if I was to combine it with the liquid left in the alcohol wipes container we could have our own moonshine cider. Mmmm, tempting.

The doctors have been monitoring Rhys’ liver function during the blood tests as said previously. The count had been going down until yesterday when it started climbing again. Today the count nearly doubled. We believe this is likely to be due to something going wrong in the lab. Tomorrow will confirm or deny this.

Tomorrow will also bring Rhys’ weekly foot massage. Jax really should get a medal for doing these massages.

Also tomorrow Rhys has another CT scan to see whether the fungal infection that was on his lungs has cleared up.

What with the school teacher coming in for lessons as well it will be a busy day.

Oh, and Tracey comes back after being ill for a few days. Mind you I’m not sure that she’s totally recovered because if she was then she wouldn’t be so eager to come back into hospital.

Day 51 Update

This was going to be the day 50 update but its taken me so long to write it that we’ve got even more to add to it so its day 51.

Well Rhys is still in isolation. As you can see for the latest video we’ve put up on YouTube he is enjoying the foot massages. He’s enjoying them so much that he falls asleep at the end of them.

Latest news is that Rhys is continuing to eat solid foods. He has a new diet plan – no bacon sandwiches on it yet Steve, one of these days that sandwich will arrive you know.

The kind of things he gets to choose from at the moment are rice krispies, cornflakes, rice milk (his diet is low fat, low fibre, lactose, wheat and caffeine free), white boiled rice, plain mashed or boiled potatoes, a small portion of tinned peaches or pear, plain rice cakes (you should see the list of items that have to be checked for on the label on the packaging that indicate it contains lactose), boiled sweets and a variety of half strength, diluted or decaffeinated drinks.

Today he managed a dessert spoon of rice krispies for breakfast and a similar amount of mashed potato for tea, a good sign as the sooner he is eating, the sooner that they can reduce the amount of TPN they are giving him As TPN contains glucose, a form of sugar, this sticks to the inside of the Hickman Line and provides a lovely place for bacteria to grow and cause infections.

Once he’s eating for himself and isn’t reliant on the intravenous and nasal feeds as much then it will be several weeks before he is eating beef burgers and waffles again but eat them he will.

The consultant came in today and we had a long chat.

To look at Rhys and his blood results you would think that everything is going to plan and that nothing was wrong. However, one of the things that they check for is to do with liver function. This has been going up and down like waves on the sea.

At the moment what they are monitoring is going down, this might be due to the drugs they are giving him.

They are not sure whether the reason for this is GvHD or the adenovirus that he’s got. They have been monitoring the adenovirus and the levels have been quite low, somewhere in the mid-hundreds, low thousands. The last measurement they did for it though showed that it had jumped to over 20,000 copies of the virus per millilitre of blood.

He is being treated with steroids at the moment with the possibility of using something called immunoglobin, which is full of other people’s antibodies. Using this is dependent on whether it has been cleared for use in dealing with adenovirus.

Adenovirus is something that most people have as it lives in the stomach and intestines. In healthy people with a good immune system it isn’t a problem as the bodies natural defences are able to keep in under control. When the body isn’t able to deal with it then you might get stomach problems, feeling queasy and such like.

In about 5 to 10% of people who have had transplants because their immune system isn’t what it should be then, for some currently unknown reason, the virus is able to get into the blood stream, something it doesn’t normally do, and reach other organs. In Rhys’ case it looks like it may have reached the liver.

The drugs that the doctors are giving Rhys at the moment can bring it under control, when they will achieve that isn’t definite but there have been cases much worse that Rhys where the drugs are given and suddenly, almost overnight, the adenovirus disappears. That’s what we are hoping for here.

As its the weekend Tracey went up to Jackie and Dave’s on Friday. Today, Sunday, she phoned and is full of a cold. No coming back to the hospital for her until she is fully recovered. Unfortunately for Rhys it means that he has to put up with his annoying father until she returns. On the flip side, its boys only here so we’ll have to party while we can.

Rhys is asleep at the moment (its nearly noon). He went to bed early last night and was asleep by 8pm. Apart from waking a couple of times, once to be sick, during the night he slept through until 8:30 this morning when both of us got up and watched Toonattik, fortunately just in time to watch Power Rangers. Just after Something for the Weekend Rhys lay back down and went to sleep.

Having just spoken with Jenny the nurse looking after him today the reason that he’s sleeping so much is probably because of the Total Body Irradiation he had before the transplant. Its now been over 6 weeks since the transplant and the TBI. About 6 weeks after TBI patients go through a phase of being sleepy. It looks like this has caught up with Rhys at last. Looks like being an exciting week of watching him sleep. At least it will be quiet.

More news later in the week mainly so Tracey can follow along while she puts here feet up and recovers We might even post a video of Rhys sleeping – if people can tune into Big Brother to watch people sleep why not to watch Rhys.