Month: July 2004

On Thursday morning they told me I could bring Massimo home, but by the time I went to collect him he had spiked a temperature and wasn’t looking himself at all. An influenza bug has been detected in one of the secretions tests that they did so a course of antibiotics was started yesterday evening. I hoped that by today he would be better and might come home especially as his oxygen requirement had come right down and when I called in the evening he was doing well with no oxygen at all. This morning when I called the nurse looking after him told me that he was very unsettled and unhappy, so much so that at around 11.30 after a dose of paracetamol and a dose of ibuprofen didn’t settle him they ended up giving him a sedative. He wasn’t in a great mood most of the time I visited but apparently this evening he was playing happily in his cot and is now fast asleep. At this stage it is difficult to predict when he will be home but it should hopefully be soon.

Today we finally got a little information on the procedures that happened at the end of last month. During the bronchoscopy Mr Daya took 3 biopsies. The first from the back of Max’s throat. This biopsy has been diagnosed to be tumour and has been sent off to the Royal Marsden for confirmation. The second and third biopsies were taken from the trachea (windpipe) around the area just below the smaller tracheostomy tube, one from the anterior and one from the posterior wall. Both of these have come back negative, ie. they were just tissue samples. This means that what was blocking Max’s tube was a granuloma, as we suspected and hoped, rather than tumour. The MRI scan shows that the tumour is exactly the same size as it was this time last year (8th July 2003) which is good news in that it hasn’t grown but it also means that it hasn’t shrunk. What is not clear however is if the tumour is the same size relative to Max, or, as Max has grown, the tumour has stayed the same size, and thus become relatively less significant. Unfortunately Mr Daya and Suzanne Crowley and both on holiday at the moment so I shall have to collar someone else!

The general feeling is that Max has a viral infection which is what is making him feel so rotten (just like Justin was yesterday) so a little bit of time and extra pampering is what he needs. Hopefully he will be home soon.

This morning we were off to PICU with neenars again at 5 am. He has been not quite himself for a few days. On Friday morning he had a temperature but that seemed to go away, but he had a very unsettled night on Friday night. J and I got very little sleep but couldn’t quite put our finger on what the matter was. He had quite unsettled nights both Saturday and Sunday and on Monday he was very sleepy. By Monday evening he was very distressed but I couldn’t figure out why. Nurofen and Paracetamol seemed to help but not for very long. Eventually we sedated him and he calmed down and fell asleep, but his breathing was very laboured. We have found, like last month, that there seems to be something intermittently in the way when suctioning him, and his breathing can be eased by applying pressure to his trachy. Worryingly, this is very much like the situation before the bronchoscopy last month, and it doesn’t seem to be a realistic prospect to be repeating this procedure on a monthly basis

He is now settled in PICU and being well looked after. We are hoping that his ENT surgeon will see him either today or tomorrow. We will keep you updated.

I have noticed a lack pictures recently so here are a few. If you place the mouse over the picture you will get the date of when it was taken or maybe even a caption!

I’ve already received one complaint about the lack of updates so I thought I’d write something before I received any more! Our weekend at home post-operatively was quiet and calm. On Monday, finally, our bath aid was delivered. We’ve been waiting for it for nearly 4 months and now it is here. It is fabulous and Massimo now really enjoys his baths rather than suffering them.

On Monday evening Marina came to look after Massimo so that we could go and see Shrek 2. As this would take us into the late evening, we had organised it so that it was a night when Helen was doing a night shift as she is here by 9 pm and we didn’t have to rush, indeed we could squeeze in dinner first. Unfortunately Helen wasn’t well that evening, so we got to go out for a quick dinner only – which was lovely! Continue reading “A good two weeks at home”

This morning at 10 am Massino was taken off CPAP and put on 0.25 litres of oxygen. When I went in to visit with my friend Sue at around 12.30 pm we took his oxygen mask off whilst cleaning his trachy and changing his tapes and he was still saturating at 99-100% so we took him off that too! By 3.30 pm we were organising to bring him home and half an hour ago we were here.

It is amazing to think that 3 days ago he couldn’t be ventilated and today he is at home breathing really very, very well!

Today Massimo was taken off the ventilator and is now on CPAP. The settings have all been reduced and he is doing very well. His midazolam was stopped this morning and his morphine was stopped this evening. He is on clonodine to help with the withdrawal of both the midazolam and the morphine, but he seems to be coping really rather well. His oxygen requirement has come down from 45% to 25% (21% being air) in several stages.

That is the medical stuff, on the more personal side, Massimo was quite unsettled yesterday afternoon, but fell into a deep sleep at around 6 pm, and continued sleeping on and off until 6 pm this evening. He obviously had a lot of sleep to catch up on! He had Lizzy and Marina visiting and the three of us tried very hard to wake him but although he opened his eyes a couple of times, he drifted off to sleep within minutes! Eventually we left him in peace.

He was awake when Justin visited this evening and he is still awake now. I suspect he will be fast asleep when we go and visit tomorrow!

Massimo had a settled night last night and had been fairly stable, however at Doctor’s rounds this morning they were still unhappy about the amount of carbon dioxide that he seemed to be accumulating and therefore decided to change his trachy tube for one of the original (stronger) type but one size up. Additionally, his nurse had had difficulty suctioning his tube, and felt that it was blocking – a further reason for the change. Things immediately improved and he has been much better since.

It had also been decided at Doctors rounds that they would catheterise him to ease maintaining his fluid balance, and also put in an arterial line to ease regular taking of blood to keep an eye on his carbon dioxide levels. As things were looking so much better this afternoon, both these uncomfortable procedures have been postponed and will only be contemplated again if things start looking worse again.

Both Justin and I are very happy with this turn of events but of all of us I think Massimo is the most relieved – he hasn’t breathed this easily for quite a while!