When we went to bed on Thursday night we called PICU, as usual, to check up on Massimo’s progress only to be told that he had been so restless that they had taken him off CPAP early and he was happy and settled and all was well!
Friday was Massimo’s best day. He was off CPAP and even off his oxygen. He was happy and smiling and he even giggled – I think it was a first! The plan, at that stage, was to keep him in PICU and review him on Monday.
Continue reading “First up and then down again”
Today Massimo’s CPAP support has been turned down gradually during the day and he has been doing very well on it. The plan is to take him off CPAP tomorrow morning at 6 am and just keep him on some oxygen. At the moment he is on 30% oxygen, where 21% is air. When breathing on his own his oxygen requirement is measured in litres per minute and I think that 30% is roughly equivalent to about 6 litres of oxygen per minute.
He has been doing extremely well and today the physiotherapist Ellie came to try out a body support system on him. Should all go well we might be able to post a picture of this contraption in use for you tomorrow. Massimo looked very comfortable, if a little bemused, by this new sitting position!
Massimo isn’t out of the woods yet, but today he took two big steps forward. Firstly when we went to see him his paralysis medication had already been stopped and he was breathing well with the ventilator. No major traumas happened as he woke up, which had been their experience over the weekend, and everything went smoothly. Tattie Lucy turned up to visit at around 11.30 and when we went to see the little man he stirred and opened his eyes. He even managed a half smile! They gave him a little more sedation to send him off to sleep again and he did so gently.
Continue reading “A big step forward”
Massimo is still stable. His ventilator settings have been lowered again and he seems to be coping with these too. Tomorrow they are planning to let his paralysis medication wear off to see how his breathing copes. He will not be paralysed but he will still be heavily sedated. We will hopefully be in PICU when they do this. We will let you know tomorrow what happens.
This morning, as he had been so stable over the previous 24 hours and after discussion during doctors’ rounds, Massimo’s ventilator settings were fiddled with and they have managed to reduce slightly the pressures that he is breathing with. He seems to be stable with these new settings and although he is still kept under paralysis medication this is a small step forward. The plan with the doctors is to keep him like this for the moment, keeping a close eye all vital signs, gas results, etc. We are still waiting for GOS to get back to us. Apparently there are two types of stents that can be put into his airway. One type spring open, but the feeling is that these might not be strong enough against the pressure of the tumour. We are awaiting to hear from the Registrar at GOS who inserts these to see what he thinks. The other type of stents are stronger but have never been inserted into a child as small as Massimo. Again we await to hear from the doctor who inserts these to see what they think. Essentially, what PICU at SGH are doing is what can be done at the moment. Nothing would be gained by moving him as GOS would not consider stents quite yet, but the act of moving him could be potentially very dangerous. So far, so stable.
Our attempt at a good night’s sleep was interrupted at 1.30 am by a phone call from PICU telling us that they were finding it extremely hard to ventilate Massimo and that it was a good idea if we went in to see him. We were told not to rush, it wasn’t urgent, but just to come in. Justin was dressed and I was still stumbling around looking for clothes when we received a second call saying that Massimo had settled and of course we were welcome to come in, but he seemed absolutely fine. Under advice from Mr Daya they had already changed his variable trachy tube back to his normal tube as he did seem more comfortable with the old tube.
Continue reading “Massimo (and our) worst day ever – by far”
Since the last entry on Tuesday we have had a few difficult days. On Wednesday Massimo was due to have his tracheostomy changed for one with an adjustable length. The hope was this will hold his trachea open beyond the end of the tumour which is on the outside of the trachea squashing it shut. I was under the, possibly misguided, impression that this would be happening in theatre on Mr Daya’s morning surgery list. Unfortunately Massimo was not on the list and Mr Daya’s registrar came to see Max and said that he wasn’t going to theatre as the variable tubes hadn’t arrived yet. In actual fact the tubes had been in Massimo’s cubicle on the ward since Friday. The sister on the ward (or is she a Senior Nurse?) tried in vain to contact Mr Daya’s registrar with this information but the registrar never called back, however we were told that Mr Daya would come and see Massimo at lunchtime. Lunchtime came and went and next thing I found out Mr Daya had gone down to his afternoon clinic. Massimo had been nil by mouth since 3 am as we assumed he was going to theatre but at 9.30 his nurse took pity on him and gave him a feed.
Continue reading “The many changes of the trachy tube”
Yesterday Massimo and I went to GOS for another oncology appointment and the second cycle of chemo was started. Unfortunately Massimo’s oncologist, Dr Peppy Brock, had not received her copy of the MRI scan or the pathology report so she had little to tell us about how the first cycle went.
Now Massimo is 8 and a half months old, his corrected age, i.e. the age he would be if he had not been born premature, is 6 and a half months. This means that, by age, his organs are mature enough to cope with higher doses of chemo. However he is still under 10 kgs (22 lbs) as he is now 8.15 kgs (17 lbs 15 oz) and so his new dose of chemo is 66% of the full dose. Most significantly this is more than double the last dose so we have been warned to expect him to be much more ill with it all this time. Fingers crossed that he won’t lose his lovely new blonde hair!
Yesterday Massimo had another bronchoscopy, this time under sedation rather than under general anaesthetic because the doctors wanted to look at his lungs whilst he was breathing spontaneously (under general anaesthetic he would be on the ventilator). They did actually see something that explains all these blue episodes that he has been having. The lower part of his trachea, beyond his trachy tube, appears squashed. We are assuming that this is the tumour on the outside of his trachea which is putting pressure above and below the trachea. When Massimo cries really hard or panics for any reason, the trachea collapses totally closing off his lungs and therefore turning him quite blue. The long term solution is to get rid of the tumour, which the chemotherapy is doing, albeit slowly. The short term solution, to get us through the next few months whilst the chemo is doing its bit, is to insert a longer tracheostomy tube to hold the trachea open. The plan is to insert a variable length tracheostomy tube as soon as they can get hold of the right one and see how he copes with it and whether or not it is a viable solution. If all goes well, then they will have to order specially made ones that are the right length for him.
The bad news is that as long as he has the variable tracheostomy, he will not be allowed to come home. It is likely that Massimo will stay in hospital for the next month or so.
September 21st dawned bright and sunny and Verna (the night before) and Lizzy, Tommy, Zoë, Dom (during the day) all looked after Massimo so that I could look my best and put the honour into matron of honour. The day went off without a hitch and I’m sure you will all agree that the bride looked absolutely magnificent. Proceedings ended at some early hour of Monday morning and we were grateful for Verna’s presence again that night.
Continue reading “One Wedding, Two Emergency Trachy Changes and other shennanigans”
