Massimo's story

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.

This morning’s meeting was a bit of a mixed bag. We were afraid that we would be told that there was nothing that could be done. That was not so.

There are a range of options, the simplest is to use a balloon dilation to try and push the tissue growth out of the way, squashing it to a size where it does not interfere so much with his breathing. Next was the possibility of fiddling with the size and length of the trachy, which is what we have done in the past, and which does work, but past experience shows that this is only a temporary solution as eventually either a granuloma forms at the end of his trachy or he has tracheal collapse beyond the tube if it is too short. Another option is to surgically remove the offending object. The possible problem with that is that it may be part of the tracheal wall, being pushed in by the tumour, and if it is removed, that would obviously pose problems later on when/if the tumour regresses.
Continue reading “A few options”

We had a largely uneventful day at GOS today. Having arranged to meet up with the specialists at 1.00pm, we were called first thing by the ENT registrar who had had a look down Max’s trachy with a flexible bronchoscope, and I am guessing on the strength of what he saw, decided that a rather more in depth discussion was required involving more of Max’s specialists.

On Monday afternoon, when everyone had a look down Max’s trachy, the SGH ENT reg felt that the growth we were looking at (I had a look, along with the PICU consultant and Max’s respiratory consultant) was not the usual granuloma tissue caused by the end of the tube. The others felt that, on balance, it was more likely to be granuloma than tumour.

Although he didn’t say it, the impression given by the GOS ENT reg was that it doesn’t look like a granuloma and that therefore what was required was rather more than simply the use of a laser to remove it, hence the delayed meeting with more specialists.

We are off to GOS first thing tomorrow where we are, frankly, more than a little worried about what is in store.

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”

On the Monday (2nd February), Massimo was due his cocktail of Actinomycin D and Vincristine chemo drugs and we were supposed to be going to Great Ormond Street to have these and to have a chat with his oncologist. As he was still on CPAP and still in PICU, we decided, along with the PICU doctors that Justin and I would go to GOS on our own and Massimo could to have his chemo on PICU on the following day. On the Monday, after various conversations with GOS, J and I were about to head off up there when we received another call saying that of course we were more than welcome to keep our appointment but there would be more to discuss the following week and could we make an appointment for then.
Continue reading “A prolonged apnea”

Having gone off birthday present shopping this morning, we got to the hospital to find that the nurses had given him a good wash in the morning and dressed him up in his birthday outfit. He was, however, fast asleep as you can see in the picture. He stayed asleep and looking angelic until about 3 pm when we, very gently, woke him up.

He was very spoiled with cards and gifts galore, including 3 pressies from the unit and two huge birthday cards signed by many of the doctors and nurses. We took a picture of just some of his gifts for you and you can see how we decorated everywhere for him. He had 3 birthday cakes and not one tiny bit was left over by the end of the afternoon! He also had 5 helium balloons which monopolised his attention for quite a while.

Once things had quietened down a little and there was just Justin, Simona and I left we opened Massimo’s big pressie from his Mummy and Daddy. We were quite concerned that he might be too tired for it, but as these next two pictures show that was not how he felt about it! We were just thrilled that he liked it so much!

After all the excitement we got Massimo back on the bed for a little rest as he was beginning to look exhausted, and I certainly felt quite tired too, so I curled up next to him for a bit of a bedtime story.

By the time we left at nearly 8 pm he was still not asleep, just happily lying there playing with his zebra, a very happy and contented little boy.

On Thursday Massimo seemed to turn another corner. In the morning he was giggly and smiley with the nurses and had plenty of smiles left over for me. We had a bit of the session with the physiotherapist and the occupational therapist in the morning, followed by a quick nap, then more smiles and playing with Daddy who popped in after lunch. Playing with Mummy, another nap at tea time, then even more smiles and playing with both Daddy and Mummy in the evening. It has been wonderful and amazing. The pictures shown here were actually taken this weekend when he was also feeling pretty good. View image
Continue reading “And on the up again!”

Since Massimo went in on Thursday in the early morning he has been given CPAP. CPAP stands for Continuous Positive Air Pressure which means that the machine blows air constantly into his lungs, keeping them ever so slightly open. As the hardest part of the breath is the initial opening of the lungs, with CPAP this is much easier. The machine can also detect when he breathes and can push additional air into his lungs with every breath. This is called ASB. Both the CPAP and the ASB can be set at certain pressures (in cms of water). The pressure of the CPAP is know as the PEEP (Positive End Expiratory Pressure). When Massimo first went in on Thursday he was on a peep of 10 and on ASB. On Friday the ASB was turned down, then off, on Saturday the peep was down to 8, on Saturday the peep came down to 6. On Monday morning the peep came down to 4 and he was taken off the CPAP for a trial with just oxygen.
Continue reading “So much better … then worse again”

If you have a computer, and you would be anything other than relaxed about the complete loss of everything saved on it, my advice, from bitter experience, is to back it up!

Fortunately, I WAS backing up the essentials, but not everything hence no pics at the moment. Once the hard disk comes back from the data recovery specialists, and I hand over the vast amounts of cash necessary for them to give me back my data, we will hopefully have the pics back.

On a rather more significant point, Max is back in PICU after an all too brief few days at home. More on that soon.