Massimo's story

Max is home and for two nights in a row he has not needed any oxygen! This hasn’t happened since so long ago I can’t quite say exactly when, but certainly not since before Christmas! He is very happy and other than a leaking gastrostomy (still!) he is really very well. He is extremely cheerful and we have even noticed growth whilst he has been in PICU, and it has only been ten days. I finally managed to weigh him today and he is a whopping 14.1 kgs (or 31.1 lbs or 2 stone 3 lbs). Gone are the days when his weight was in pounds and ounces!

Max came off CPAP yesterday morning and within a couple of hours was also off oxygen. He remained off CPAP all night and can come home today. We are waiting for his take home drugs to come up from pharmacy and he will be home shortly!

Massimo was kept pretty much paralysed and sedated up till Friday when he started breathing a little better. By Sunday morning he was taking his ventilator tubing off and handing it to the nurse, as he does, and so they decided that it was probably time to put him onto CPAP. He did very well on CPAP until they took him the theatre to cauterise his gastrostomy on Monday afternoon, but by the evening he was back on CPAP (any general anaesthetic requires full ventilation). Hopefully they will also try him just on oxygen today and see how he copes.

They have been weaning him off the various drugs now for quite a few days and then this morning his canula (access to his vein) blocked off so they have decided that as he was so far down the weaning regime they could just stop all morphine and medazolam. So he’s now off the worst of the drugs too.

He is definitely on the mend and we hope he will be home soon.

On 5th August Max, Simona and I went to Christopher’s for the day. Max tried the sandpit, which he did not like at all, and then went on the big boy swing again, which gave him a cool breeze he rather appreciated. Simona insisted on going with him on the baby swing too, but soon regretted it when she started to feel a little queasy! A trip to the pool, with all 3 of Max’s ladies in waiting (and another on the side taking the pictures!), a quick bath and a trip to the sensory room before making our way home again. It was a very full day which he, and we, enjoyed thoroughly as can be seen by the photos.

On Saturday we were at the Viña’s for a barbecue – it was a scorchingly hot day and Max was very, very grumpy until Alison produced a fan to blow over him. Once cooled he proceeded to do the biggest poo, filling his nappy and overspilling onto Alison’s blanket – honestly this isn’t the way to behave in company! Alison luckily was most amused. Once home again, Justin went off in search of fans for us to have at home. The temperature was really just too much for everyone and Max clearly finds it hard to cope with. I think that by next year we might even invest in a small air conditioning unit for the wee man. His room gets really very, very overheated as the concentrator, which makes oxygen for him, is much like having a radiator permanently on in the room! On Sunday Grandpa and Mal came up for the day and sorted out our front garden, which is looking very respectable now, and started on the back garden.

In the meantime, we struggled with a leaking gastrostomy and a very irate toddler – he is far too big now to be called a baby! We had been having quite a lot of trouble with the gastrostomy and had changed it rather too regularly over the past week and it was all getting a little too much for us and for him as it leaks gastric fluid which is very acidic and the skin around the stoma was getting very sore. Then on the Tuesday Helen (his community nurse) and I decided that we would try putting a button in again – what possessed us, I don’t know, but it seemed like a good idea at the time! The gastrostomy leaked like never before, we went through tons of lyofoam (dressings) to pad it out – we were using three at a time to stop the leaking, but then Max would think it very amusing to remove it and his inquisitive fingers are very difficult to control. We put up with this for about 2 days then we decided to try another button (we are in Scotland by now!) and that didn’t improve things, and then eventually we went back to the old temporary tube, which proved altogether much easier to manage. This hasn’t solved the problem by any stretch of the imagination however it is under control – sort of.

On the Wednesday morning (11th August) we left for Scotland and finally arrived at 10 pm. Max was a star and so were the dogs. They put up with the long journey with minimal fuss. We had some lovely days up there, even when it rained, and Max and Harriet just adored each other. She literally “took his breath away” as he would laugh at her until he had to remember to breathe again! Unfortunately these moments were so wonderful that we cherished them all and never managed to get them on film! We went for walks, went shopping for the day (the girls), and built a hut (the boys). We had a wonderful time, except Max’s breathing started to deteriorate at night half way through the holiday. Of course bad breathing puts more pressure on his gastrostomy, causing more leakage. Also he started pooing several times a night and getting really very upset with it, which put further pressure on his breathing and on his gastrostomy. Verna came up and spent from Thursday to Sunday with us, which was a great help, but Sunday and Monday nights Justin and I were on our own and spent very little time sleeping. By the time we left early on Tuesday morning, we were exhausted. The drive back was hard work and J and I kept swapping the driving to make sure we were alert in enough to cope.

We got home at about 8 pm and Justin unloaded the car whilst I started putting Max to bed. Max got all worked up and upset and needed oxygen, which sent me into a bit of a spin. I settled him but he wasn’t very happy and as we had so much trouble with his gastrostomy we had decided not to feed him during the journey, so I thought he must be hungry and overtired and generally not feeling himself. So I got him ready for bed as quickly as possible and started his feed. Helen, the night respite nurse turned up and took over. Max’s breathing was very laboured and she gave him a ventolin nebuliser. His breathing did ease a little but he was still struggling. We went to bed early with a heavy heart having already called PICU to find out how busy they were and to ask for a little advice. At 1.45 am Helen woke us with her very down to earth words “it is time to go to hospital”, I handed her the phone to call the ambulance whilst J and I got dressed. By the time the ambulance were here we were ready to go. Within an hour Max was already ensconced in a bed on PICU and by 4 am we were back in our bed.

In the morning we got a call from PICU telling us that Massimo had been breathing with difficulty but was OK until at one point he started gasping for breath. They tried to bag him but found it very difficult to keep his breathing going. They did an emergency tracheostomy change but by the morning he was still breathing badly and looking panicky. Eventually they anaesthetised him and then decided that they needed to sedate him and paralyse him in order to ventilate him properly.

A course of antibiotics and steroids was started and Massimo has been settled, although very sedated, ever since.

… is a charity event to raise money for the Neonatal Unit at St. George’s Hospital, London: www.to-the-max.co.uk

Max’s aunt, Tatie Lucy, is organising this amazing event in order to thank the Neonatal Unit at St. George’s for all they have done for Max. Although we have come across many other charities that deserve our support, this was the first and without them Massimo would not be here. I’m sure in the future we will support other charities, but this year we are dedicating it to the Neonatal Unit.

Anyway, the event is an auction of promises and a raffle. We are looking for people to donate prizes for auction and for the raffle and also for people to start selling raffle tickets for us. These will be printed for us by Barry Cooper of Brunswick Press (for free!! isn’t he just amazing!) for us and will be available very shortly. If you can help with any of the above please contact either Lucy (lucy.lauder@sibylcolefax.com) or myself (silvia@hopemason.net).

Of course we would like you all to turn up on the evening as it should be a really good event, with The Rawhides providing the entertainment: songs and a show based on the Blues Brothers (thank you Robert our next door neighbour for agreeing to do this for next to nothing) and Persian and English canapés prepared by Fariba (a fellow dog walker whose son was also in the NNU at SGH for a short while after his birth).

Today was my 20 week scan (although I am 21 weeks + 4 days for those of a more precise nature!) and the scan showed that so far all is well. The baby turned around to face us and opened his legs wide and tackle was definitely visible! So another little boy for us and a little brother for Max to play with. We are having an extra scan at 30 weeks to check my amniotic fluid levels and that will be on 5th October.

Max is doing well, quite grumpy at the moment but I think that is more him learning to be a little assertive. We are off to Christopher’s on Thursday so I will hopefully be able to post some pictures after that (if I remember the camera of course).

On Saturday morning they told us we could pick him up, but when we went in an hour or so later they had changed their minds as Max was still working hard on his breathing. They did however suggest we took him out for a wander so with Tommy who was visiting, we went off down the high street for a sandwich and coffee. Massimo was unsettled but happy to be out and about watching the world go by. After we took him back we did his routine weekly trachy change. He seemed much happier with the fresh tube and in the evening, when J went back for a second visit, the nurses said we could bring him home. At that point, J sensibly decided to leave him where he was for the night and we collected him this morning. He is still requiring a little oxygen sporadically during the day, but he is much more his old self and it is good to have him home. Amongst his new tricks he has learnt to blow rather loud raspberries, this time with his tongue between his lips, giving them quite some power. He has also learnt to put his hand inside the back of his nappy and sometimes also down the front taking the sticky tapes off. Quite frankly Max, if you want to take your own nappy off you can only do so when you have learnt to put a fresh one back on!

On Thursday morning they told me I could bring Massimo home, but by the time I went to collect him he had spiked a temperature and wasn’t looking himself at all. An influenza bug has been detected in one of the secretions tests that they did so a course of antibiotics was started yesterday evening. I hoped that by today he would be better and might come home especially as his oxygen requirement had come right down and when I called in the evening he was doing well with no oxygen at all. This morning when I called the nurse looking after him told me that he was very unsettled and unhappy, so much so that at around 11.30 after a dose of paracetamol and a dose of ibuprofen didn’t settle him they ended up giving him a sedative. He wasn’t in a great mood most of the time I visited but apparently this evening he was playing happily in his cot and is now fast asleep. At this stage it is difficult to predict when he will be home but it should hopefully be soon.

Today we finally got a little information on the procedures that happened at the end of last month. During the bronchoscopy Mr Daya took 3 biopsies. The first from the back of Max’s throat. This biopsy has been diagnosed to be tumour and has been sent off to the Royal Marsden for confirmation. The second and third biopsies were taken from the trachea (windpipe) around the area just below the smaller tracheostomy tube, one from the anterior and one from the posterior wall. Both of these have come back negative, ie. they were just tissue samples. This means that what was blocking Max’s tube was a granuloma, as we suspected and hoped, rather than tumour. The MRI scan shows that the tumour is exactly the same size as it was this time last year (8th July 2003) which is good news in that it hasn’t grown but it also means that it hasn’t shrunk. What is not clear however is if the tumour is the same size relative to Max, or, as Max has grown, the tumour has stayed the same size, and thus become relatively less significant. Unfortunately Mr Daya and Suzanne Crowley and both on holiday at the moment so I shall have to collar someone else!

The general feeling is that Max has a viral infection which is what is making him feel so rotten (just like Justin was yesterday) so a little bit of time and extra pampering is what he needs. Hopefully he will be home soon.

This morning we were off to PICU with neenars again at 5 am. He has been not quite himself for a few days. On Friday morning he had a temperature but that seemed to go away, but he had a very unsettled night on Friday night. J and I got very little sleep but couldn’t quite put our finger on what the matter was. He had quite unsettled nights both Saturday and Sunday and on Monday he was very sleepy. By Monday evening he was very distressed but I couldn’t figure out why. Nurofen and Paracetamol seemed to help but not for very long. Eventually we sedated him and he calmed down and fell asleep, but his breathing was very laboured. We have found, like last month, that there seems to be something intermittently in the way when suctioning him, and his breathing can be eased by applying pressure to his trachy. Worryingly, this is very much like the situation before the bronchoscopy last month, and it doesn’t seem to be a realistic prospect to be repeating this procedure on a monthly basis

He is now settled in PICU and being well looked after. We are hoping that his ENT surgeon will see him either today or tomorrow. We will keep you updated.

I have noticed a lack pictures recently so here are a few. If you place the mouse over the picture you will get the date of when it was taken or maybe even a caption!

I’ve already received one complaint about the lack of updates so I thought I’d write something before I received any more! Our weekend at home post-operatively was quiet and calm. On Monday, finally, our bath aid was delivered. We’ve been waiting for it for nearly 4 months and now it is here. It is fabulous and Massimo now really enjoys his baths rather than suffering them.

On Monday evening Marina came to look after Massimo so that we could go and see Shrek 2. As this would take us into the late evening, we had organised it so that it was a night when Helen was doing a night shift as she is here by 9 pm and we didn’t have to rush, indeed we could squeeze in dinner first. Unfortunately Helen wasn’t well that evening, so we got to go out for a quick dinner only – which was lovely! Continue reading “A good two weeks at home”

This morning at 10 am Massino was taken off CPAP and put on 0.25 litres of oxygen. When I went in to visit with my friend Sue at around 12.30 pm we took his oxygen mask off whilst cleaning his trachy and changing his tapes and he was still saturating at 99-100% so we took him off that too! By 3.30 pm we were organising to bring him home and half an hour ago we were here.

It is amazing to think that 3 days ago he couldn’t be ventilated and today he is at home breathing really very, very well!