Month: July 2003

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.

Today we all went to the Freddie Hewitt Ward, with Massimo starved since 5 am. We were there by 7.50 am but, other than signing the consent form, nothing happened until 11.30 am when we took him down to the MR Unit. Again, I was allowed to cuddle him whilst he went to sleep and he did the most impressive wriggle before going off, lifting his legs and bottom right off the bed and jiving with his arms, it was really cute!

During the scan J and I had sandwiches and strong coffee and an hour later we went to the recovery room where we found a very upset little boy. A kiss, cuddle and dummy later he did start to settle. We returned to the ward, with me in a wheelchair cuddling the wee man. Back in our cubicle we realised that Massimo’s saturation levels (oxygen levels in his blood) were not bad but not really as high as they usually are, so we gave him just a little oxygen for a couple of hours.
Continue reading “MRI scan”

On Friday we had an appointment with Dr McGowan whose area of expertise is Child Development. Although J and I are both very pleased with Massimo’s various achievements, his smiling, his playing with his hands, his finding his face etc we know that we are doting parents and certainly not impartial observers. Dr McGowan basically told us that as far as she can see Massimo is developping normally and that there is nothing she can add to what we are obviously doing already and that she will see us again in 3 months time! Isn’t our little boy just a little star?!?

This weekend Uncle Toio and Leanne came to stay and we had a very relaxed and fun time. Today we had our first lot of day respite care and Lara looked after Massimo from 11 am to 4 pm. I was unsure of what to do with myself and felt quite out of sorts but luckily two other Neonatal Unit mums suggested meeting for lunch and that helped getting through the worst of the worrying! I came back to find Massimo had had a great afternoon and did not seem to have missed me at all.

Tomorrow at sparrow’s fart we are off to St George’s for the MRI scan. We probably won’t have the results until Wednesday (if we get them that quickly) but I will update you as soon as we have any news. Both J and I are feeling quite anxious about what the scan will reveal but until we know it is pointless to speculate.

On Sunday the whole family went off to Wimbledon Common for a lovely long walk. It was a beautiful day and we all enjoyed the fresh air. Massimo was awake some of the time and we think he enjoyed the view. At one point we got him out of the buggy for a good look around as you can see in the picture. (Thank you Mr and Mrs Pope for the outfit.) Horace found what was probably a rabbit hole and spent a good ten minutes making the hole bigger before sitting down for a well-deserved rest!

Massimo was weighed on Tuesday and with the news from the ENT surgeon I forgot to let you all know. He now weighs 5.71 kgs (12 lbs 9 oz) and is taking 850 mls of milk per day (of which 500 mls is breast milk and the rest is SMA Gold). Continue reading “Bits ‘n’ pieces III”