Just thought I’d give you idea of how much medication Rhys is on at the moment in addition to the saline and morphine drips he’s constantly attached to.
This morning he had 7 syringe loads of medicine and 3 syringe loads to flush all this down his nasal tube.
Then he was also hooked up to his Ciclosporin again this morning and a syringe of medicine was added to this.
Finally before he was hooked up to the Ciclosporin another syringe was put into the line to flush it.
The size of the syringes varied from 5 ml to 10 ml, the majority being 10ml. The Ciclosporin is 50ml in itself.
So to put it into perspective its about half a can of coca cola of medicine and flush.
And that’s not the last he’ll have today!
Think about whenever you’ve had to have medicine and imagine having to drink a coke can of it each day. Complete respect to Rhys and all the others on the BMT unit who are having to do that each and every day.
At least he’s having those through his nasal tube and Hickman Line because I don’t think even a bag full of sugar would help all that medicine go down.
The morphine experience has got even bigger. Today the “pain team” came to see Rhys and discussed his morphine intake. As the continuous infusion of 2 ml/hour of morphine wasn’t controlling the pain they replaced the morphine syringe pump with a PCA (Patient Controlled Analgesia) pump. This is basically the same as the syringe pump except it also has a controller with a button that Rhys can press in order to get a quick 1 ml shot of morphine when the pain gets too much.
Fortunately it is not possible to overdose on morphine with this as it has a lockout which prevents it being used more that once every 5 minutes and also triggers an alarm when a pre-set amount has been used over a 4 hour period, something that was achieved this afternoon as the nurses instructed that the morphine could be given every 5 minutes at one point.
This morning Rhys spent a bit of time with the play specialist making fridge magnets and a key ring using a very nifty, heavy duty badge making machine. Rhys enjoyed doing this.
This afternoon Rhys, Tracey and I watched The Wizard of Oz on DVD which passed a couple of hours.
The rest of the day Rhys has spent sleeping.
Today Gran and Grandad came to visit. Gran is one of Rhys’ named visitors and so was able to don a pair of scrubs and go into the room to see him with Tracey. Grandad isn’t a named visitor and so had to spend the visit in the parents room with me.
Rhys has had loads of different medication today. He’s had Ciclosporin again and has also had Piriton for itching and antibiotics as the point where his Hickman Line enters his chest is rather red and inflamed. Earlier today he had a magnesium infusion as his blood counts for today showed that this had dropped. This evening he also had Folinic acid and platelets, the latter because his count was 20 and the doctor expected it to drop by tomorrow.
His other blood counts are: -
Hb – 9.2 – down from yesterday so he’s heading towards needing a blood transfusion at some point.
WBC – 0.03 – down from the last couple of days.
Neutrophils, Lymphocytes and Monocytes are all low.
Between the drugs and everything his body must be a right battlefield at the moment.
One good thing though is that the general feeling is that the mucositis should run its course within 5 to 7 days. As he started suffering from it on Monday this means that by the end of the weekend he should be showing signs of recovering from it.
Thank you to everyone who has posted comments on the blog and also the photo albums. Its nice to know that people are taking the time to follow Rhys’ journey and let him know this.
I managed to arrive 20 minutes early because the traffic in North Bristol was remarkably quiet at 8:15.
Having filled in the usual paperwork, required prior to donating blood, and read the folder you get given about donating blood, one of the nurses appeared and we went to run through the forms. All pretty standard if you’ve donated blood before.
After that we went through to a really swish area containing chairs and the machines that filter the blood when you donate platelets.
The nurse found a suitable vein and filled four vials with blood for analysis.
Pretty painless process really. I sat down with a coffee to wait for the bloods to be analysed.
Ten minutes or so later an a nurse appeared with the results. Unfortunately although I have enough platelets for myself I don’t have enough to be able to donate platelets for others. A shame really considering how many bags of platelets Rhys has had over the years.
Although blood donors are reasonably common, platelet donors are much rarer as I’ve found out.
Rhys woke up this morning between 4 and 5am to say that he was really sweaty. We felt his pyjama top and it was soaking. There was no way that he could stay in a top that wet so I got out a new top for him to wear.
Problem though – how to change the top when he is attached to so many tubes. The only way to do it would be to get the nurse to come and disconnect his nasal tube temporarily while he changed his top and then reconnect it. The alternative was to take the top off and leave it hanging from the tube but then we’d have to get the new top on.
When Rhys sat up we found that the bedclothes themselves were soaking as well.
Rhys decided that the simple approach was best and promptly pulled his pyjama top over his head taking it off.
I stared at him as it shouldn’t have been possible to do that with out yanking the tube attached to his nose, unless of course the nurse had come in while we had been asleep and disconnected his feed tube.
I could see the end of the tube and it didn’t look right. Where was the connector at the end? It wasn’t there. There was just the end of the tube dangling there. It was at this point that we realised that the tube had broke.
Rhys got a bit panicky at this point so we called the nurse.
The nurses came in and we got Rhys changed into fresh pyjamas and a new end was put on the tube which was taped securely into place. Nobody wants to have to try to replace the existing tube at the moment so we are working with what we’ve got until such time as it has to be replaced or taken out.
After all of this Rhys went back to sleep.
His pyjamas and a very soggy, small teddy bear had to go into the washing machine. Having had his bath Ted looks a spiky. A bit of TLC looks like its in order once he’s dried off to get him back to his normal state.
Around lunchtime the nurse looking after Rhys came in and used a small vacuum suction tube to take some samples of the contents of Rhys’ nose as a couple of the other patients near us have got infections and the hospital want to make sure that Rhys hasn’t caught it too. Unfortunately there wasn’t much up there so they’ll probably have to repeat trying for samples again later on.
The rest of the day has been spent mainly sleeping. Probably a good thing really as it will get him through the period when his mouth is sore. From talking to one of the other parents this might take about a week but will eventually pass.
The mucositis has resulted in Rhys finding it difficult to eat and drink anything easily, even bacon sandwiches are off the menu. The dihydrocodeine wasn’t working and so the doctors have switched Rhys to morphine to help control the pain. He’s on a continuous infusion which started at 0.7ml per hour but at the time of writing is at 1.8 ml/hr. Even that isn’t reducing the pain to something that makes it easy to eat or drink. Mind you it doesn’t stop Rhys from talking to people on his web cam. It has resulted in him sleeping during the day, which is a good thing as it will help him to get through the infection without having to deal with too much pain.
Considering the fact that you aren’t overly active when in hospital, you do get surprisingly tired from sitting around and Rhys (as well as Tray and myself) has been known to fall asleep during the daytime.
The doctors have taken Rhys off his Ciclosporin temporarily because the levels they monitor in his blood, when giving the drug, were elevated.
Rhys is also getting feeds during the day as well as the night through his nasal tube. Since his mouth is sore the nurses are also administering his medication through the nasal tube as well. Apart from the obvious that using the tube means he can still have his medication without it causing him pain, there is the advantage in that he is receiving itraconazole this was as well. Since the itraconazole tastes disgusting and the only way that Rhys can normally take it is with a drink then there are some good points to the tube.
The last two days have seen some events occur to keep Rhys entertained.
Yesterday morning when I got into the hospital Rhys was having his Ciclosporin. I happened to glance at the bed and noticed that his line was red with blood in it. As the drug was supposed to be going into Rhys and not his blood coming out there was obviously something not quite right. We called the nurse who looked at line and couldn’t see any obvious reason for the blood leaking back. As it was the Ciclosporin going in there was no way that we could fiddle around with the drug because it is very important that Rhys gets it so that the donor marrow is not rejected by his body. We could see on closer inspection of the line that the drug was going into Rhys. The nurse then suggested that we try raising the line up slightly and let gravity take a hand in getting the blood to flow back into Rhys. This worked with the result that the line was cleared after about 15 minutes of raising it section by section.
Yesterday, we also happened to glance out of the window and saw a crowd of people stood around outside the oncology hospital. It was obvious that the fire alarm had gone off and they had evacuated the building of everyone they could while they waited to confirm there was a fire. The fire engines turned up a short time later but left an even shorter time after that so it was a false alarm.
This is the second fire alarm that we know of. The first Rhys and Tracey discovered when they went over to the radiotherapy and found the place empty. They had used the shortcut between the Children’s Hospital and the Oncology Hospital. By the time they got there the alarm had been switched off which left them in the radiography department but with nobody around, as they were all stood outside the building.
Less dramatic but no less entertaining were the visits from the play specialist, the music therapist and the massage therapist.
Rhys spent an enjoyable morning getting messy with paints. He painted one of the sick bowl, unused I might add, turning it into a rather fetching hat. Then he spent the remainder of the session dropping paints onto pieces of spinning card in order to make colourful patterns.
The music therapist arrived in the afternoon but had to come back as Tracey wasn’t around and she wanted to be there for the session so that she could join in. When Tracey, Rhys and the therapist were finally in the room together I legged it in order to protect my hearing. Rhys or Tracey will have to post about the session.
Day 5 saw Rhys avail himself of the opportunity for a foot massage. As Tracey and I were in the parents room at the time we missed out on this. Rhys will have to tell you all about this himself.
Rhys continues to work towards becoming either a doctor or nurse when he grows up. He can operate most of the equipment in the room, probably as well as the staff can. He’s now learning how to look after his bed which includes stripping it, washing it down (mattress and frame included) and then remaking it with clean bedding. This has to be done every day because of the need to keep everything as clean as possible. The staff being are being brilliant about it and letting him help. In fact the staff are pretty brilliant in general with looking after Rhys and us.
Well the first few days have seen the treatment going as expected. Life in the BMT unit is pretty uneventful. Sit around, eat and drink something, sit around some more, chat on web cam and surf the Internet, check e-mails, watch TV, eat and drink some more. In between all this there is medicine by tablet, liquid or intravenous drip.
The weather has turned a bit over the last two days so that it looks like a traditional bank holiday. Thank goodness we’re tucked up nice and cosy in the hospital watching the rain come down.
This morning we had a few laughs when Rhys discovered that the plaster holding his nasal tube in place had come loose. One of the nurses was called in order to get it refastened. Of course this led to the instruction to Rhys not to sneeze which left us giggling, Rhys trying not to sneeze and me being really annoying and pretending to sneeze. Of course when the nurse returned and started to replace the plaster what happens, Rhys starts sneezing. Fortunately the tube stayed in place and is now securely fastened to his cheek once more.
Rhys has been suffering from diarrhoea for the last two days which the doctor this morning said is one of the early signs of mucositis along with a sore mouth and some signs of whitening in the mouth. The doctor is going to prescribe Dihydrocodeine ( DF118 ) to help with the pain. If this doesn’t ease it then they will prescribe morphine.
Tomorrow (Tuesday) looks like it could be a more entertaining day as the play specialist should be around and a message has been left for the music therapist asking them to pay a visit. I’m not sure who is looking forward to that more Rhys or Tracey as she’ll be bringing instruments with her to play. Might be a good opportunity for another video.
Rhys is sleeping, clutching his teddy bear. Tray is asleep. The air conditioning unit is humming away; there is the occasional whir from the nasal feed machine as it pushes feed into Rhys. The rest of the unit sounds quiet. The occasional nurse walks past the room in the corridor outside.
Through a gap between the curtain and the window frame the dark night sky can be seen. In a couple of hours the sky will begin to lighten as dawn arrives bringing an end to this long night and the start of a new day, a new beginning in our journey towards Rhys getting better.
Time for me to get a bit more than the 10 to 15 minute snatches of sleep we’ve been able to grab in between the nurse doing observations on Rhys.
