Massimo's story

… we were getting used to things as they currently stand, today we discovered another problem. Luckily this time it is a very common one and simply fixed with a small op. Massimo has a hernia, which is apparently quite common in pre-term babies. A quick op, another scar and another general anaesthetic to be organised as soon as possible.

Today we had an appointment with the geneticist so that she can work out whether Massimo’s various problems are linked in any way. The upshot of the meeting, other than spotting the hernia, is that she needs to do some thinking and analysing but the likelihood is that Massimo has just been very, very unlucky. Obviously this isn’t a firm conclusion quite yet.

Other news is that Max is now 6.7 kgs (14lbs 12oz), a rough estimate of his height is 60 cms (we bought a height chart – dolly the dalmatian – and I just laid him on there!). He has started grabbing things and bringing them to his mouth although his favourite activity is dribbling lots and then smearing it all over his face!

Justin and I have been having continuous arguments about the name of this site as I have always disliked “Massimo’s Progress”. For some reason it reminded me of Lorenzo’s Oil. Today I have finally insisted on changing the name to Massimo’s Story. I/we would like your opinions on the matter although we do not promise to heed to any suggestions!

Today was another chemo day or as we now like to call it, an MOT day. Helen and I have dubbed it an MOT day because so many checks happen on the same day: change of trachy tube, re-dressing of hickman line, dose of chemo and/or flushing of hickman line, checking of gastrostomy site (today we cleaned it too!), check over by paediatrician, flexible bronchoscopy (camera down trachy to see how the tumour is growing in the windpipe), blood tests. As you can imagine this all takes quite a long time but unlike last week, this week we were home by 3.30 pm, so a long day but shorter than last week. Next week is a GOS chemo day and along with all the above we will also be having a CT scan to check his shunt is correctly positioned and working. I have a feeling that next week will be a very, very long day! Continue reading “MOT day”

Yesterday we arranged to pop in to see the ENT Surgeon during his clinic which is held weekly on a Tuesday. Between an unsettled night worrying about Massimo’s breathing and a grumpy little boy due to the chemo, we didn’t get to SGH until about 12 noon(ish). Mr Daya took us straight in and he had a look down his trachy and into his trachea (flexible bronchoscopy) and said that there is some granulation visible at the bottom of his trachy but the tumour is not visible and that he thought that we would not have any problems before the chemo starts to take effect in about 6 weeks’ time. We have, however, arranged for someone from the ENT team to see Massimo every week just to make sure that his airway is clear and that if the tumour is visible, to organise putting in a longer trachy tube.

Having worked ourselves up into a bit of a frenzy since last night, we were expecting to be admitted so that Massimo could be close to oxygen should he need it. We also took it a step further and thought that we could see no way that they would discharge us for at least 6 weeks. Being home tonight with such good news is an enormous relief.

I forgot to say that Massimo has now learnt that he can make noises with his mouth and spends plenty of time playing with this new toy! He will be blowing raspberries before we know it!

Today we were due to go to SGH (St George’s Hospital) for our second dose of chemo and also to meet the ward that will be looking after us as long as Max is on chemo. Well a possible 2 hour visit ended up being an 8 hour visit and I am exhausted. Firstly we did a trachy change and it is obvious now that this HURTS him and it HURTS LIKE HELL! We guess (and now I know) that we scratch/rub the tumour on the way down with the new tube. After that he was due a feed and fell asleep only to be disturbed by one of the doctors coming to examine him, then another doctor came and we noticed that he was recessing (ribs showing when breathing) which is a sign of bad respiration. The upshot was that they decided to do a snot test (NPA is the official name but a test for viruses of the secretions) and a chest x-ray. The x-ray showed good air in his lungs but very little air in his trachea. This means that the tumour has taken over his airway (windpipe) so much that he has very little space to breathe through. Although we have had some chemo it will probably take getting to week 8 (of 10) before the tumour will stop growing, at the moment the chemo will only slow the growth. So I am off to hospital again tomorrow to see the Paediatric ENT surgeon and/or the Paediatric ENT registrar. Unfortunately we have discovered that they are both going on holiday in August so we will then be under the care of another ENT person who doesn’t know Massimo very well and who isn’t specialised in Paediatrics. I know we will still get excellent care, however we have now met so many doctors and nurses, it would be nice to stick to some that we know already!

So this evening we have Max on the saturation monitor just to keep an eye on how well he is breathing. We are very much on tenterhooks and I don’t fancy my chances of staying out of hospital for much longer. Hopefully we will still manage to go out to celebrate Massimo’s 6 month birthday on Wednesday (a day early but J’s Mum & Step-Dad can’t make it on Thursday).

(Apologies for posting this so late)

I have to say that the signing course was absolutely marvellous and I would recommend this to everyone with children under 2. The idea is that babies over 6 months but under two have developped sufficiently physically in order to use their hands to communicate, but their vocal cords and facial muscles have not yet developped enough to enable speech. Apparently the terrible twos are terrible because children are desperate to tell you stuff but do not yet have the means to do it. Do I sound like an advert? I certainly don’t mind if I do and here is a link to the course I did signing infants!

Other than that some fun stuff has happened. Massimo has found his willy and grabs it at every opportunity – typical male, I think! He has also found his trachy and spends many hours pulling the humidifier off and then has a go at getting his thumb under the trachy to see if he can pull that off too. Not such a clever idea really! His gastrostomy is currently a long tube which comes out of his tummy (it will become a button in due course) and his Hickman line is a tube coming out of his chest – two fantastic things to grab and pull at! He often also assists when suctioning grabbing the catheter or your hand. This new ability means he is making more use of the things on his activity mat. His smiles are bigger, brighter and more frequent and his attention span and concentration have improved vastly. He has learnt that being crotchety gets him lots of cuddles and smiling gets him lots of interaction.
Continue reading “Signing and other stuff”

On Wednesday Massimo spent most of the day on continuous morphine but in a very small dose for a very small person. He also had a few extra shots throughout the day when the nurse thought he was in pain. He slept an awful lot and basically just got through the day. In the afternoon we were moved from the Peter Pan Ward (ENT) to the Lion Ward (oncology). Here our room size doubled, we had our own en-suite bathroom and air-conditioning! It felt like the lap of luxury.

Whilst on Lion Ward the nurses decided to organise a special nurse for Massimo. They felt that their skills with tracheostomies had suffered through lack of use and that they could all do with a little refresher. My put up bed was in a corner and I had a little curtain around me, whilst someone stayed in our room all day and all night looking after Massimo. It felt really strange but it did improve the amount and quality of my sleep.
Continue reading “The details”

Just to let you know that we are all at home, tired and a little stressed out, but home. I will write much more tomorrow but for tonight I just wanted to let you all know we are home. Chemo happened this afternoon and it was a lot less dramatic than we expected. The first dose is over. Onwards and upwards!

J and I spent all day today at the hospital and have only just managed to get home. We knew that Massimo was on the afternoon list and that he would have his last feed at 9.30 am but only of breast milk (formula can only be given up to 6 hours prior to a general anaesthetic). At about 2 pm the nurse looking after Massimo phoned the anaesthetists to find out if she could give him some glucose and she was told that the first person on the list had only just gone onto the operating table and that there were 2 more children before Massimo. 100 mls of glucose later Massimo fell asleep. At around 4.30 pm we were told that the first child was still on the operating table and that they still had a way to go, so J and I went out with Tara for an ice cream in Russell Square.
Continue reading “Gastrostomy and Hickman Line”

Last night was an unsettled night for Massimo as he managed to keep his breathing working well and at around 3 am the oxygen levels in his blood dropped and they gave him a little oxygen for a couple of hours. Later at around 5.30 I noticed that a lot of his ng (feeding) tube was out of his nose. The nurse tried to push it back in but as it is a silk tube, it is very soft and difficult to push so they decided to remove it and replace it with a normal ng tube. This was quite difficult to do because the tumour has overtaken Massimo’s throat and there is little room for the tube.
Continue reading “A bigger trachy tube”

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”

GOS have called to say that actually they want him there tomorrow. Having explained that Massimo is currently in SGH and that we were coming in on Sunday the doctor said she would double check and call us back.

In fact a Registrar called the nurses on Freddie Hewitt and between them they will organise our transfer by ambulance from one hospital to another. I will be going in the ambulance with Massimo, whilst J looks after the dogs and he will come up to the Lion Ward later.

This morning Mr Daya, our ENT surgeon, called to say that the Royal Marsden has come back to say that Massimo’s condition is NOT rhabdomyoma but myofibroma. Myofibroma is basically still a form of benign tumour. However he said that the difference in diagnosis is rather academic and that the most important thing is that the growth of whatever it is is quite alarming as there has been a rapid growth even just between the MLB and the MRI (just under three weeks). He said he had referred Massimo to Great Ormond Street (the Royal Marsden do not accept babies) and that we would be getting a phone call from someone at GOS and that Massimo would be admitted as soon as there is a bed free.
Continue reading “New day, New diagnosis and a return to Freddie Hewitt”

Today the physiotherapist came to meet and assess Massimo. We had asked for a referral to the physiotherapy team to help us teach Massimo to cope with his rather larger than average head and also to learn to what extent we needed to be aware of his tracheostomy when handling him or placing him.

Elly came to see us at around lunchtime and she and I spent a happy hour with Massimo and his activity mat seeing what his range of movement is and seeing what positions we could encourage him to lie in. Specifically, most babies learn to lift their torsos by being placed on their tummies and this is the first step to learning to roll. Massimo is never placed on his stomach as this tends to elicit a bout of crying but with Elly and a judiciously placed blanket rolled up we achieved the desired position and Massimo looked very comfy indeed.

Just before Elly left we also tried to place Massimo in the Kangaroo position. This is used in the NNU to promote a baby’s closeness to his or her mother. Due to Massimo’s trachy it is a position in which I have never held him and as the picture shows we achieved a close approximation to the Kangaroo position and I felt so incredibly close to Massimo that I nearly burst into tears with the overwhelming emotion. Massimo felt so comfortable and comforted that he promptly fell into a deep sleep.