Massimo's story

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!

Today was the day we had been waiting for. Having got through the day I think we can safely say that it is on a par with all of our bad days, except that particular day in February at GOS.

Massimo was second on the list for theatre and between one thing and another he didn’t go until probably around 10.45 am. I was expecting Mr Daya to have a good look and to put in a longer trachy tube and really not much more. I’m not sure what J was expecting. Mr Daya, however had different ideas. I/we don’t know whether this was due to what he found, or whether he had planned it. To be fair, I think I should have had an inkling that he wanted to do more as he had previously said that he wanted to take a decent biopsy sample as this hadn’t been done since he took one in June last year. What he did in the end was take a biopsy from the back of Massimo’s throat, another one from the posterior wall and another from the anterior wall of Massimo’s trachea. Whether either of these last two samples were tumour or granuloma we will only know when we get the results back from pathology, but it seemed to Mr Daya that they were very hard scar tissue, which is what the myofibroma is. The trachy tube was also changed for a thinner but longer one. Continue reading “The Bronchoscopy”

Massimo is still in PICU. On Thursday we were told that we could bring him home during the day if we wanted to. So he came home for a few happy hours and I took him back at 7.30 pm (yes, I missed the beginning of the match, J stayed at home to watch it!). I got him ready for bed and by the time I left at 8.20 pm he was fast asleep. Friday was a day when I was due to have respite and I had organised to go to the hairdressers and then to meet a friend for lunch. I therefore arranged with Annette that we would pick Massimo up from PICU together and then she would stay at home with him. Unfortunately he hadn’t slept well that night and he was very tired, so he actually slept nearly all the time he was with Annette, and as he was asleep his breathing was really not good at all. Annette ended up holding him on her lap and pushing his trachy in for nearly 3 hours on the trot. Her left arm went blue due to lack of blood flow and the fingers on her right hand had quite marked dents where she had been holding on to the trachy. She gave him to me just before he left and Massimo got agitated and a little blue. Luckily J was on hand as he is very calm and very good at positioning the trachy well. After Annette left, Massimo woke up and was bright and happy and gorgeous! Continue reading “Still in PICU”

After Massimo’s fabulous day at Christopher’s we had a fairly unsettled night with him getting upset in his sleep and his breathing being very wheezy. On top of this he has now developed an impressive double chin which makes keeping his oxygen on at night rather difficult as it pops off easily as he moves around in his sleep. Without his oxygen at night his oxygen levels drop, the monitor goes off, and up we get fumbling to put it back on in the dark. Morning comes and Massimo is bright as a button whilst J and I are looking a little worn around the edges! Saturday was actually our 5th wedding anniversary and we left Max in capable hands whilst we went off for a nice lunch at Chez Bruce. Massimo had a lovely day and smiled at all and sundry. That evening when we went up to say a last goodnight before going to bed, Verna was already looking after him, he started getting very upset (but not opening his eyes) and began to find it VERY difficult to breathe. His increasing inability to breathe meant he began to panic and go blue around the edges. We increased his oxygen and I picked him up for a cuddle but nothing seemed to help him until J held his tracheostomy tube and pushed it down really quite hard. We have used this tactic before and it seems to push something out of the way and enable him to breathe much more easily. He calmed down immediately and we went to bed. He repeated this performance for Verna about four times in the night. Continue reading “Unsettled nights over the weekend”

We went to Christopher’s today, where Massimo had a grand old time playing in the little chair and table they have there, then we went swimming and then we did some messy play and we made a card for father’s day. But best of all we managed to get purple paint (in Lizzy’s honour) absolutely everywhere! The last picture is of Max in a hoist. If he continues to grow at his current rate we might need one of these at home. We also weighed him, in the hoist, and he now weighs 13.3 kgs (29 lbs 5 oz or 2 stone 1 lb 5 oz). No wonder we are beginning to struggle when we pick him up!

Since my last entry we have been fairly busy, within the limits of my now pregnant (and therefore tired) state! Wednesday 2nd June was a quiet day at home, with just a quick trip up to Balham for a breath of fresh air. Thursday heralded the arrival of Charlie and Sadie our good friends who decided to leave London last year and bought themselves a derelict castle in Scotland to move into (www.dunanscastle.blog-city.com)! They arrived with their new(ish) 5 month old baby daughter Harriet and I’m sure you will all agree she is a little beauty! It was very interesting to watch the reactions of the dogs and Massimo to the arrival of a little baby who cries, and LOUDLY! The three of them were all stunned, but soon got used to it, and in fairness she didn’t cry very much at all! Claire, Massimo’s respite nurse, arrived at about the same time as the D-Ss, so Sadie and I went running out the door for a little shopping and a cup of tea. The evening was spent extremely companionably, and the children were extremely good that night for us. Continue reading “Marwell Zoo, Christopher’s, Portage and more!”

On Saturday night, by 10.30 pm we were on our way home from the airport, Max fast asleep in his car seat, Verna waiting for us at home. We got in, Verna put Max to bed and we unloaded the car and had a cup of tea. When we finally went up to bed, we’d heard Max’s alarm had been going off quite regularly and as I walked into his room I asked “are we calling an ambulance?”. I was only joking, but in fact Max had spiked a temperature and his heart rate was getting higher and higher. When it hit 217 we also realised that he was leaking all his milk, and therefore also his ibuprofen and chloral hydrate (sedative) and that we were unable to calm him down at all. Also he was so upset that he was putting so much pressure on his gastrostomy that we thought it would pop out! We called an ambulance and in A&E they gave him a paracetamol suppository (or two!) and by the time they took effect the crisis was over. We did however leave him in overnight to say hello to the nurses as we suspected that was what he really wanted. He is on another course of antibiotics, but seems really rather well in himself now.
Continue reading “Home and straight to PICU!”

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”