Month: May 2004

Since my last entry we had a quiet Tuesday, Amanda and Thierry had work to do, but the children weren’t at school because the teachers were on strike! We lounged by the pool and Max decided to have a bit of an off day. We never quite figured out why, the question of teeth coming is always present but we have seen no hint of enamel yet. However by Wednesday he was back to his happy self. Wednesday morning we took Verna to the airport and she returned to her motherly duties. We think she had a good time, it was a change if scenery if nothing else! Continue reading “We are home”

Continue reading “Some pics”

Hello all from Le Ticoulet, Villematier in France! Amazingly enough we have made it – or maybe it is just amazing to us!

We got up bright and early on Friday morning (4.15 am) and poor Massimo looked thoroughly put out at being awoken in the middle of the night. We piled everything into the car and off we went, late of course! Justin dropped me off at departures where Verna was already ready and waiting but we still needed the assistance of a porter (who happened to be Italian and very helpful) in order to get us all to the check-in desk. Whilst we queued, J parked the car before he joined us at check-in. Altogether we had 75 kgs of luggage, 15 kgs overweight. Our lovely check-in lady was only going to charge us for 8, but her colleague said if it is medical equipment just let it go, which was absolutely wonderful.
Continue reading “Salut from France”

I picked Massimo up from PICU this afternoon, after spending a good few hours waiting to see a surgeon about his gastrostomy. We are now home, I have an absolute ton of stuff to get ready, but it looks as though we might just make the flight. His breathing isn’t brilliant at the moment, but it is manageable. Our next hurdle is ensuring that easyjet will allow us to board the flight. We have promised PICU that we will try to put regular messages on the website, even if all they say is “still here, doing OK” – so if you see these you know why they are there! We are under strict instructions to send them a postcard and to call the minute we get back. I do believe they are more concerned than we are!

Bonne vacances!

When I went to see Massimo later on the Tuesday afternoon he seemed very settled. I was told that he had slept lots and his secretions from his trachy had become whiter in colour (rather than yellow) and his temperature was under control with little or no paracetamol and ibuprofen. We had a cuddle but he soon fell asleep again. He obviously had a lot of rest to catch up on and he was oblivious to his father visiting later on. Of course he was wide awake later on and a little unsettled, so he was given a little sedative and he went off to sleep again.

Over the day Massimo’s CPAP settings had been reduced in two stages, from a peep of 10 to a peep of 5. Then this morning he was taken off CPAP and put back on his thermovent (Swedish nose – the white filter that sits on his trachy protecting his lungs from dirt and cold). He was originally on oxygen, but as this is his favourite toy, he was playing happily with the tubing and saturating well (maintaining good oxygen levels) so they turned the oxygen off. He remained like this all day, and although his breathing is still a little wheezy and he is still working hard to breathe out, he has managed well. We could have brought him home tonight, but we decided that we need to get a little more input from the doctors as we want to discuss putting a longer trachy tube in and we would like a surgeon to have a close look at his gastrostomy, which is currently behaving, but the hole doesn’t seem to be healing properly.

So it looks as though the trip to France is still a possibility so today I packed all of Massimo’s medical equipment and we have one very large and very heavy box, and a further two smaller, lighter boxes. I have also packed his clothes. Tomorrow morning I will attempt to pack the rest. I have little hope of getting any sleep on Thursday night as we need to leave the house at 4 am and there will be lots of last minute things to do!

Fingers crossed.

In the last post I mentioned that Massimo was really very grumpy on Sunday morning, but that he was better in the afternoon and OK overnight. However, on Monday around midmorning he started being really grumpy and wanting to sleep but not staying asleep and constantly wanting to be held. Then at 2.30 ish he went very purple and clammy. He was doing a poo and I put it down to that but even after he had recovered he was still very unhappy, very restless and clearly in discomfort. The paracetamol and ibuprofen I had given him seemed not to have made any difference at all. At around 3.30 I called Justin in despair and he came home to help. By 5 pm, with no improvement and signs of a temperature starting I called PICU for advice. The sister on duty and myself decided that he probably had a bacterial infection (on top of the viral one) which would definitely account for the grumpiness and that a course of antibiotics would be the next step – clearly not a PICU requirement. We went to the GP who listened to his chest and prescribed the antibiotics. She was very concerned that his breathing wasn’t good and that if there weren’t signs of improvement by the evening we should take him to casualty. It was 6.30 pm at this point. Continue reading “Early morning neenars to PICU”

Justin has decided to upgrade the website and this will also mean that in due course we can properly fix the problems we have been having with the photos not appearing as thumbnails and the old photos not being there any more. A little more patience on that one please! We hope you like the new look but any comments positive or negative, please send them directly to Justin! One change which is important is that from now on you will automatically receive an email with each and every post rather than just with the important ones as we have been doing in the past. Should you wish not to be hassled by constant emails, please feel free to unsubscribe yourself from the notification list. (The email notification and subscription bit isn’t working yet – sorry – J)

Back to Massimo. Continue reading “Welcome to the new look website”

Last Friday we spent a lovely day. In the morning we met Katy and her three terrors (they are all absolutely adorable!) and then spent a lovely hour at the Paint and Bisque-it with Maz and Maddy painting ceramics. Saturday and Sunday were spent quietly at home and all was going rather well, then Monday came along…
Continue reading “A blue episode, neenars and a trip to PICU”