Author: Silvia

Massimo now weighs 10.6 kgs or 23 lbs or 1 stone 9 lbs.

Massimo has been off CPAP since 9 am yesterday morning and doing very well so we went to collect him this morning. He is currently here, happy in Annette’s arms having his feed. I’m sure he knows that he is due to go swimming for the first time tomorrow and didn’t want to miss out.

Last Wednesday we went to Christophers at Chase (www.chasecare.org.uk) and had a wonderful day there with Granny. Unfortunately we forgot our camera and had to rely on theirs, so there are pictures and we will get copies of them tomorrow. We are off to Christophers again tomorrow where Marina, Massimo’s assigned nurse, will be there ready and waiting. The plan is for a swim in the morning and a bath in the afternoon, possibly with a visit to the messy playroom to get paint all over our hands and feet.

Massimo’s wheeze got progressively worse over the 24 hours to yesterday afternoon. The salbutamol nebuliser that I gave him didn’t seem to make much difference and at about 5 pm we took him in to PICU at St George’s to be reviewed. There they gave him two more salbutamol nebulisers and an adrenaline nebuliser and he seemed to settle and go to sleep.

In the night he had an episode of desaturation and difficulty in breathing so they put him on CPAP overnight. This morning he was happily back on just oxygen and we were getting ready to collect him. He has since had another episode and is back on CPAP. How long he will remain in PICU and on CPAP only time will tell.

Amazingly enough we are still at home. We have broken our 2 day record and have now been here for 5 days. Only one small hiccough in that Massimo had a wheeze on Saturday and by Sunday morning no amount of saline nebulisers helped so we popped in for a brief visit to PICU for a quick salbutamol nebuliser (asthma inhaler stuff in a nebuliser) which seemed to do the trick. He still has a slight wheeze but it is much better now. Of course all this happened whilst Justin was away overnight at a stag weekend, but we managed very well on our own except that the suction machine tipped over in the car and got the filter wet so it stopped working. I had to get my brother out of bed and round to PICU to rescue us with the spare part!

Quite the most interesting and important thing that has happened is that on Sunday morning Massimo took off his oxygen, a game he likes to play, and play quite well, but most significantly he did this with his right hand and then took the oxygen from his right hand with his left hand. Of course most babies learn to do this sooner but I am inordinately proud! Justin didn’t see it, of course, and I’m not quite sure he believes me.

I was just going to put the photos on and leave it at that, but I feel compelled to add a few words! Massimo is still on a fairly substantial drug regime and this will be weaned over the next two or three weeks and some of these drugs do make him quite sleepy and quiet. He is however, becoming more and more alert every day and slowly is regaining control over his muscles (the effects of the muscle relaxant are still there even though that was stopped 12 days ago). Verna looked after him last night and said he was “an angel”. The three of us are just having lots of quiet time together and enjoying every minute of it!

Massimo has been doing so well with his breathing in the last couple of days that he spent all day on oxygen today with a view to being back on CPAP tonight and then off all day and all night tomorrow. Assuming that he copes with this we hope that he will be ready to come home on Wednesday.

Fingers crossed.

On Saturday, after a fair few delays we returned to PICU at St George’s. It felt like we were coming home!

Massimo has unfortunately lost 500 grammes in the last 2 difficult weeks – the nurses noticed and decided to weigh him to check! And all his “normal” regime is back in action – feeding times, quantities, drugs, etc etc. It is also because he is better that all these things can in fact be changed back, but it is also a testament to how well he is known here at St George’s, and how important they think it is to get him back to as much normality as possible. Also all his intravenous drugs have now been replaced by oral drugs (I think this is only possible now because the quantities of the intravenous drugs have been reduced sufficiently) and today he was on oxygen and no CPAP for 4 hours in the morning and 4 hours in the afternoon. He was only on about 0.1 – 0.2 litres of oxygen which is an incredibly small amount, but in the morning he was on no oxygen at all! What a star!
Continue reading “Back at PICU St George’s”

The good bit first. Massimo’s ventilator settings have been reduced all through yesterday (from a Peep of 10 to a Peep of 6 in one day) and this morning he was put on CPAP. He seems to be coping well and they are planning on slowly weaning him off his sedation. Apparently coming off midazolam is much like giving up heroin with all the side effects. As we know that in October he did suffer quite badly with withdrawal they won’t be weaning him at any great speed.
Continue reading “The future is bleak”

We saw one of the doctors on PICU at GOS yesterday afternoon and he said that they had hoped for a much better result from the steroids and that they can see no benefit from them at present. The infection seems to have gone and that is good. The main results from the bronchoscopy is that it is tracheal wall and as such cannot be removed. Further, neither a change of tracheostomy tube nor dilatation will help. The doctor was really quite pessimistic and basically it is up to the wee man to breathe properly and for himself.

His muscle relaxant was stopped yesterday morning, as much because he has been on it for too long and needs a break as to see how he breathes himself. He is still heavily sedated and on lots of morphine. He started to move and twitch last night and trigger a few breaths himself – this is when he starts the breath and the ventilator does the rest. Apparently he has opened his eyes this morning so we are off to see him now. We are also due to see the doctors again today.

On Friday as Massimo’s infection was under control and his ventilation was settled, the ENT surgeon decided that it would be a good idea to have a look down his trachea to get a better idea of what is actually going on. The plan was that if the “tissue” that Justin saw on Monday turned out to be granulation tissue then they would laser it off, but if it was tracheal wall or tumour they would just take a few pictures and send Massimo back to PICU.

The wee man went into surgery at around 5.15 pm, but he was back very quickly as the obstruction was seen to be tracheal wall. The tumour is pressing on the windpipe and causing it to weaken. The tissue that Justin saw on Monday is something we still have to clear up. We are hoping that the steroids have reduced any swelling that there was thus reducing the size of the obstruction. We really need to have a chat with the ENT surgeon and the other consultants to have an idea of what THEY think is going on.

Massimo’s ventilation requirements have increased slightly since the investigative bronchoscopy as any kind of instrumentation causes trauma and therefore swelling. However he is still very stable, albeit still paralysed and sedated.

Massimo’s ventilator settings have been changed a little but nothing much else has changed. He does seem imperceptibly better, and his night nurse who has looked after him for the past three nights, agrees with me. His heart rate is the lowest it has been for a long time which is a really good indicator but unfortunately his upper right lung isn’t inflating well and therefore although his breathing is OK his carbon dioxide levels are still quite high.

We had a brief chat with a consultant who made it very clear that being neutropenic and on a ventilator at the same time is a VERY bad combination – being on a ventilator generally means that it is only a matter of time before you get an infection. Neutropenia means an inability to fight infection. Unfortunately, the best chance of getting Max off the ventilator is a large dose of steroids, which brings with it more susceptibility to infection. With the balloon dilation now not possible until March 1st, steroids seem to be his best bet. He has responded well to steroids in the past, so we are keeping our fingers crossed.

We decided that we always try to show you the “good” pictures and so here are a couple of pictures of when things are not so good.

Verna had an extremely difficult night as Massimo never actually settled. They tried several things to try to improve the situation but nothing seemed to work. By about 4 am Verna was very unhappy and eventually, after waking doctors and ward sisters and making quite a fuss, Massimo was transferred to PICU at 7.30 am.

It took the doctors and nurses on PICU 3 and a half hours to stabilise him as they could NOT get him ventilated. In the end they put him on an anaesthetic ventilator in the hope that the gases that they use to anaesthetise might help his wheeze and open his chest a little. This helped, but only temporarily.
Continue reading “Another difficult day”

Yep, the wee man was here for only two days and today we ended up taking him back in! We had a quiet day on Friday and Saturday morning. Then at around midday he started getting rather agitated and his breathing didn’t seem great. We removed his tracheostomy dressing and gave him a dose of paracetamol. His breathing seemed to improve as did his temperament and a lovely afternoon was had by all. His gums are very swollen and we just assumed teething.
Continue reading “Only two days at home …”

Massimo is home as of around midday today. He is still on a little oxygen and has managed to develop a cough between PICU and home, but he seems well enough. We have had plenty of smiles and are all set for a quiet weekend at home just enjoying being a family.

Yesterday we had our meeting with the oncologist. It was a long and pretty grim and difficult discussion. Firstly she told us that she had presented Massimo’s case at the UK Children’s Cancer Group as mentioned in our entry on 15th January. There were lots of people there and the response she got ranged from one extreme to other. Some doctors felt that she shouldn’t be treating Massimo at all. Their feeling was that the quality of life that Massimo could expect should the tumour disappear, shrink or otherwise be effected, would be such that it would be kinder and better to allow Massimo to enjoy what life he has left without further intervention. At the other end of the spectrum there were plenty of doctors who felt that she was doing the right thing and that we should give the chemo he is on a little longer to have an effect and take it from there. We were therefore asked what we wanted to do, whether withdraw treatment or continue.
Continue reading “What the oncologist said”