Author: Silvia

Today was my 20 week scan (although I am 21 weeks + 4 days for those of a more precise nature!) and the scan showed that so far all is well. The baby turned around to face us and opened his legs wide and tackle was definitely visible! So another little boy for us and a little brother for Max to play with. We are having an extra scan at 30 weeks to check my amniotic fluid levels and that will be on 5th October.

Max is doing well, quite grumpy at the moment but I think that is more him learning to be a little assertive. We are off to Christopher’s on Thursday so I will hopefully be able to post some pictures after that (if I remember the camera of course).

On Saturday morning they told us we could pick him up, but when we went in an hour or so later they had changed their minds as Max was still working hard on his breathing. They did however suggest we took him out for a wander so with Tommy who was visiting, we went off down the high street for a sandwich and coffee. Massimo was unsettled but happy to be out and about watching the world go by. After we took him back we did his routine weekly trachy change. He seemed much happier with the fresh tube and in the evening, when J went back for a second visit, the nurses said we could bring him home. At that point, J sensibly decided to leave him where he was for the night and we collected him this morning. He is still requiring a little oxygen sporadically during the day, but he is much more his old self and it is good to have him home. Amongst his new tricks he has learnt to blow rather loud raspberries, this time with his tongue between his lips, giving them quite some power. He has also learnt to put his hand inside the back of his nappy and sometimes also down the front taking the sticky tapes off. Quite frankly Max, if you want to take your own nappy off you can only do so when you have learnt to put a fresh one back on!

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!

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”