Author: Justin

Friday night was very difficult. As has happened before, Max’s breathing became very laboured when asleep, and combined with his distress from teething, he really was not coping very well. We got very little sleep, and debated on several occasions throughout the night whether we should take him in to hospital. In the end we did not and when the little toad woke up he was grumpy, but breathing better than he had been over night. After a snooze in the afternoon, Max was much happier, and more or less his normal cheery self.

Saturday night we had Verna Max’s respite nurse, and when she turned up at 10.30, the wee man was still up entertaining us. Once he went to bed however, we were back more or less in the same situation, and Verna had a night very much like ours the night before. She was quite worried and spoke to the community nurses when she left in the morning. They called a little later in the morning and we agreed that we would take Max in to be reviewed. We cannot just take Max into PICU, so went in to A&E at about 3.30. We had a frustrating 3 hours or so, when we were seen by 3 different doctors who all seemed to agree that Max was not really too ill, but that maybe he should stay in for observation. They all also agreed that it was possible that he had a viral infection and that there happened to be one doing the rounds. They said however that he was not ill enough for PICU and that he should go up to the regular wards. We were quite adamant that Max would NOT go up to the regular wards – he would either go to PICU or come home as the wards are simply not equipped to look after Max properly. It eventually transpired that there were no beds on the wards and so Max was, finally, admitted to PICU at about 7.30 pm. Continue reading “A tricky few days”

Continue reading “Some pics”

I have uploaded a video of Max’s swim. You can see it here.

Every day since the meeting we outlined in the earlier entry, we have discussed with people: a) whether it is appropriate to continue to put Max through the trauma of repeated ventilation, and b) how we would like to handle the inevitability of his final episode of tracheal collapse. We are sitting down with people and discussing how we would like to handle the death of our son.

It is so unbelievable that at times it just doesn’t seem real. You can’t help but imagine, over and over again what it will be like. Are we really going to sit and watch our beautiful little boy draw his last breath, and be able to do nothing to prevent it?

However awful, this is the increasingly likely reality that we are having to come to terms with and, as this truth sinks in, it just gets harder. Thank you all for your messages of support, they mean a lot to us, even though we haven’t got time to respond to you, we are very appreciative.

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.

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.

Showing what a little fighter he is, Max was really quite jolly this after-noon.

Max has to have chemotherapy – probably for as long as 6 months.

We got to GOS and settled Max into the ENT ward. It was felt that because of his trachy, and the uncertainty over the state of his airway, that he would be better off on the Peter Pan ward rather than the Lion ward (oncology) as they are more able to deal with his trachy and any problems that might arise as a result.

We then had a chat with the oncologist.

The tumour is obviously a lot larger than we had imagined, and it is threatening to compromise his lower airway. It is pushing the various vessels and nerves in his neck aside, and is squashing his voice box. We are lucky that we caught it when we did.
Continue reading “Chemotherapy”

Max’s ENT consultant just called to say that he does not have papillomatosis. Instead it seems that he has Rhabdomyoma. We are still waiting for confirmation from the Royal Marsden that this is the case, but Mr Daya was pretty confident in the St Georges results.

He described it as a benign growth of muscle tissue that starts near Max’s tonsils, and has completely blocked his upper airway. It is not however what caused the need for the trachy in the first place as it was not present when the trachy was put in.

The concern is that it could continue to grow and compromise his existing airway, so it needs to be dealt with sooner rather than later. He will be having a scan within the next 2 weeks to determine exactly where the growth is, after which he will have surgery to remove it. Obviously, removing tissue in and around the airway is a delicate procedure.

We will be meeting up with Mr Daya hopefully quite soon to discus all the implications.

From the few sites I have looked at about Rhabdomyoma, and from what Mr Daya said, this is an extremely rare condition.

Max likes to keep everyone on their toes!

Max went for the procedure on his airway today at about 12.30. Silvs called me at about 1.30 to say that he would probably be coming out of theatre shortly, so in to the hospital I went. After a bit of waiting, we went down to recovery at about 2.15, and met Mr Daya, the ENT surgeon in the corridor on the way. His wife went into labour this morning, so naturally he was in something of a hurry, but his brief explanation of what he had found was worrying.
Continue reading “Complications”

I thought as we have had so few pics recently I would post a pic of Horace having taken up residence in Max’s activity mat for the evening. It is obviously nice and comfortable.

Silvs and Massimo were on Radio 4’s You and Yours today. She was being interviewed with some friends about internet chat rooms as sources of support when trying to get pregnant.

In case you weren’t glued to your radio at the time, you can listen to it again from the you and yours website (near the bottom of the page). They also have a link to listen to just the relevant clip here.

How exciting is that?!

As Max is so much better, he has been transferred back up to the Freddie Hewitt ward. Silvs is therefore going to be spending most of her time in with him. She is therefore back on Patientline, so can be called on 07046 200076 extension 7724. PLEASE call her to relieve the boredom!

We are now waiting for a slew of procedures:

1) Shunt – To sort out his Hydrocephalous
2) Rigid Bronchoscopy – To remove by laser the granuloma in his trachea
3) Microlaryngal bronchoscopy – To investigate the narrowing below his voicebox
4) Gastrostomy – To replace his ng tube (the one in his nose)

At the moment we are hoping that the shunt will be done on Wednesday at GOS, and that he will be transferred across there on Tuesday.

He is booked in to have the gastrostomy on 26th June, when they will hopefully do one or both of the bronchoscopies at the same time – the idea being to keep the number of general anaesthetics to a minimum.

Max and Silvs will be staying in tonight for sure – beyond that we don’t really know. He is still on oxygen, so presumably as long as he has a need for it, he will be staying in.

Silvia can again be reached on Patientline with the same number as before: 07046 200076 extension 7724. I am sure she would love to hear from you.