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.

Day 44 Update

Its been a while since we posted a proper treatment update for people so here goes.

Rhys is not on medication as much of the day as he was a couple of weeks ago (at some point I’ll post a complete list of all the drugs that he has had to take). He’s managing to get through most of the night with just TPN and the feed that goes in his nasal tube. The nurses are still coming in at around 2am to do observations and at 6am to take bloods, other than that though its pretty quiet at night which gives the opportunity to get a reasonable amount of sleep.

His diarrhoea is still there but at least its not affecting his sleep like it was.

He’s had plenty of visitors. Nanny, Gran and Aunty Anne come in to see him and Tracey on a regular basis. Alex has been up to see them too.

The teacher, music therapist and play specialist have been in as well.

He’s almost finished making a hot air balloon out of papier mache. Once he has the balloon and basket connected together then we’ll see if we can get it to fly without setting fire to the hospital or getting the fire brigade called out.

His blood counts are looking good at the moment. Haemoglobin has been above 9 for the last 8 days, white blood count has been above 5 for the last week and above 6 for the last 4 days, platelets dipped to 57 yesterday but were above 60 for the 6 days before that. Finally his neutrophils have been above 3 for the last 8 days. Basically things are looking good from that point of view.

Michelle, his consultant, came and saw him the about a week ago and said that hopefully he’d be able to get out of isolation soon. By soon that means another week from today and he might be in non-isolation or if he’s really lucky at Sam’s.

Tray hasn’t managed to get away this weekend as Jackie isn’t well. This has given us a chance to actually go out and have a meal together. The first time in what must be 6 weeks.

Speaking about food Rhys has taken the first steps towards eating a bacon sandwich. He’s managed to eat a quarter of a slice of bread with a scraping of butter and Marmite on it. I know, its an acquired taste but it is edible, especially if your diet consists of liquids going directly into your veins or down your throat via your nose. Besides after all this time not eating his taste buds have probably packed their bags and gone on holiday somewhere sunny, unlike the dismal wet weather this weekend. Mind you being in hospital when the weather is like this does have its advantages. He’s also managed to eat some Rich Tea biscuits.

Anyway, that’s all for now. Check out the latest photos which we’ve uploaded and we’ll do an update again later in the week.