Pad returns

Well that was a scary moment. I ferried Pads and Ally to hospital and one of the Registrars that's known us for years examined him. He said that there is no sign of pressure behind his eyes and that the strange pupil behaviour was not thought a problem. The head and neck pain could be a 'muscular' thing. Codeine put paid to it, although even Pads was saying that sounded eerily familiar. They did 'neuro obs' and found nothing remarkable going on. One of the nurses greeted him with 'hello cherub!', and he replied, 'I'm not a fat baby', which set about 5 nurses hooting with laughter. It's all been a bit upsetting though. Mum's pushed him back home over the park for some fresh air.
He got rolled straight back to the Risk game, which was a very good distraction. Then he stayed up until 11pm watching Olympics!

Off the IV morphine

Pads has had quite a good day after a relatively calm night. The nurse spotted a mystery rash at midnight and the Drs had a look (under merciless full beam lights!). The rash spread throughout the night and morning - this was itchy but piriton soothed it well enough. Pads' temperature swung up to 38.6 at one point but paracetamol coped with that too. We didnt see much of the Drs today because the ward was so busy, but it was sort of comforting to not be a priority case. Pads passed much of the the day with his DS (Prof Layton) and Wii (Spore Hero).
His blood counts are doing fairly well too and the pain has subsided to the point where he's been weaned off IV morphine, he's getting the oral form instead (oramorph). In fact, just now, he's only got the PEG feed pump active on the drip stand (going through at 25ml/hr)... but he declined the offer of a walk outside his room.

'M' was for maths!

We've been doing a 'count-up' chart, rather than a 'count-down' one, that way we avoid disappointments but still mark time...



The teacher visited yesterday and Pads was overjoyed to take part in a brief spell of maths. Thankfully that was about the worst thing that happened! His mouth continues to heal up, with just a few ulcers remaining.
He'd been having odd little spikes in temperature (he was 38.1 at noon today) and the Dr's were thinking of sending him for a chest xray but decided against as he doesnt have a cough and they really couldn't hear anything with stethoscopes. Pads had a unit of blood yesterday because his HB count was edging below 8. The medics were also a bit worried about his levels of sodium, but, by today, this was adjusted by reducing the TPN (IV feed).
The nights are still quite disturbed... he's been doing more talking in his sleep. This puts the carer on edge as you're always on the lookout for, 'I feel sick', or 'I need the toilet'... quite tiring!

Cavilon to the rescue

After a number of hours sleeping, Pads and I were both a bit brighter today. Pads was keen to get out of bed and sit up in the armchair to play on the wii. But in fact his condition is worse today.
After a couple of breakthrough doses of morphine this afternoon for ear pain, Pads' background dose of morphine has increased to 2mg per hour from the 1mg on Saturday. There is no let up at all in the thick saliva - it is really getting to him. He's finding that the nebuliser makes his mouth even drier so that is not providing the relief we'd hoped for.
His skin is also starting to break down in various areas, giving off more pain, although thankfully there are no infections in these sites yet. We're being very ginger about cleaning those areas and applying plenty of Cavilon. cream. We've just changed his mattress for something more comfortable and a 'proper' air mattress is being ordered for tomorrow.
Right in the thick of all of this he's still able to raise a quick quip! The staff are all saying that he's doing as well as could be expected.

Enjoying the nebuliser

Mum and Pads had had a hard disturbed night, with one request for breakthrough pain relief. He drops off to sleep easily but wakes again when the gooey saliva builds up enough to threaten his breathing.
At noon today, one of the nurses suggested nebulising saline water to loosen his saliva up a bit. This seemed to work really well and he can have it as often as he wants. He can breathe 10 minutes of cool steam, very gentle and effective at breaking up the saliva (which Ruth described well as like clear mastic), as an alternative to juggling an ice-cube around his ulcerated mouth.
Pads has been mostly very quiet, although became more animated when his siblings appeared at the door for a wave after church tonight.
So, thankfully, we press on past another day without uncontrolable temperatures or serious reactions to the drug cocktail.

Held together by drugs

Over the last 24 hours, Pads has had platelets (they've raised the level at which they'll give these to 70 instead of 30 after finding blood where it shouldnt be), Caspofungin (because they found yeast where it shouldnt be), Metronidazole, paracetamol, thyroxine, oramorph, omeprazole, vitamin K, Meropenem, Total Parenteral Nutrition (TPN), magnesium, potassium, piriton, diflam, antiseptic mouthwash, sudocrem, and now he's having an IV fluid bolus to boost his blood pressure.
Throat pain has reduced speech to barely a whisper now. He's got hightened phlegm-production because of this inflamation. In spite of all these factors, he's just carrying on through it all with hardly a murmur.

Temp at 10pm was 37.2 and at 11pm 37.6. Apparently he looks a bit like he's got 'red man' syndrome - red and slightly puffy cheeks. After a very disturbed night, he did not really wake up today until 4pm, when a bout of online Connect 4 kept him amused for quite a while (you might catch him on flyordie.com). Before that he'd come around for just about long enough to ask a question but could hardly give an answer before slipping off again... even if it was about things people were offering to get for him! A friend from church kindly offered to get him a film or audio book. A colleague from work kindly offered to get him some comics. But he was more tired/ill than bored. With the love-film subscription, an almost unlimited selection of films is at his disposal, but it's been a challenge to choose movies which are good enough. He's becoming quite a 'buff' and so many films contain profane language and portray attitudes towards sex which are far removed from the wholesome, common sense Biblical ideals that make for sustainable society.

Mind games continue.

So Pads continued to miss school last week - just too tired - the hollow look, dragging himself around and that's if he made it out of bed. He showed signs of improving on Friday night though. Then yesterday he was very active - playing on a table-football for ages and we went to the international pool in the afternoon. Even today he was pretty normal until falling asleep in the afternoon and then he could do little else for the rest of the day. Regular bouts of neck pain is still a cause of anxiety. We try and reassure him about the high probability that he will not get a bad scan result but he is not convinced. The neck pain is too much like his memories of the last time. Ally is often involved in these kinds of 'no-man's land' scenarios in the lives of Velindre patients but being the mum with all that insight is quite challenging. She's seen scan results turn out bad that were expected to be good, and vice-versa. With 'George' (the PEG tube, not to mention the 'port') due to come out on Thursday, it would be hard for him to face needing another one. The consultant prefers to avoid answering hard questions like that and encourages us to 'enjoy life now' - which is more than fair - none of us know what a day may bring (James 4:14). The specialist nurse says, 'don't go there', but we've been there and come back. Our feet are on the Rock (cf. Psalm 40 and 1 Cor 10:4). Last week's morning sermon was especially helpful with this. We were reminded of Paul's confinement in the Phillipian prison where he and Silas sang praises to God before an earthquake released them. He faced far worse than that too, and yet could say, 'rejoice in the Lord, and again I say rejoice' (Phil 4:4). The ultimate example though is the Lord Jesus Christ himself, who 'for the joy that was set before him endured the cross, despising the shame, and is set down at the right hand of the throne of God.' (Heb 12:2)
The scan is tomorrow but we've been warned that the result could be delayed by as much as 10 days - the department responsible is short-staffed.
It was really nice to get the blurb about our holiday caravan, donated by the Christian Lewis Trust. It included family tickets for several of the local attractions - it's so thoughtful of them!