Author: Silvia

On the Monday (2nd February), Massimo was due his cocktail of Actinomycin D and Vincristine chemo drugs and we were supposed to be going to Great Ormond Street to have these and to have a chat with his oncologist. As he was still on CPAP and still in PICU, we decided, along with the PICU doctors that Justin and I would go to GOS on our own and Massimo could to have his chemo on PICU on the following day. On the Monday, after various conversations with GOS, J and I were about to head off up there when we received another call saying that of course we were more than welcome to keep our appointment but there would be more to discuss the following week and could we make an appointment for then.
Continue reading “A prolonged apnea”

Having gone off birthday present shopping this morning, we got to the hospital to find that the nurses had given him a good wash in the morning and dressed him up in his birthday outfit. He was, however, fast asleep as you can see in the picture. He stayed asleep and looking angelic until about 3 pm when we, very gently, woke him up.

He was very spoiled with cards and gifts galore, including 3 pressies from the unit and two huge birthday cards signed by many of the doctors and nurses. We took a picture of just some of his gifts for you and you can see how we decorated everywhere for him. He had 3 birthday cakes and not one tiny bit was left over by the end of the afternoon! He also had 5 helium balloons which monopolised his attention for quite a while.

Once things had quietened down a little and there was just Justin, Simona and I left we opened Massimo’s big pressie from his Mummy and Daddy. We were quite concerned that he might be too tired for it, but as these next two pictures show that was not how he felt about it! We were just thrilled that he liked it so much!

After all the excitement we got Massimo back on the bed for a little rest as he was beginning to look exhausted, and I certainly felt quite tired too, so I curled up next to him for a bit of a bedtime story.

By the time we left at nearly 8 pm he was still not asleep, just happily lying there playing with his zebra, a very happy and contented little boy.

On Thursday Massimo seemed to turn another corner. In the morning he was giggly and smiley with the nurses and had plenty of smiles left over for me. We had a bit of the session with the physiotherapist and the occupational therapist in the morning, followed by a quick nap, then more smiles and playing with Daddy who popped in after lunch. Playing with Mummy, another nap at tea time, then even more smiles and playing with both Daddy and Mummy in the evening. It has been wonderful and amazing. The pictures shown here were actually taken this weekend when he was also feeling pretty good. View image
Continue reading “And on the up again!”

Since Massimo went in on Thursday in the early morning he has been given CPAP. CPAP stands for Continuous Positive Air Pressure which means that the machine blows air constantly into his lungs, keeping them ever so slightly open. As the hardest part of the breath is the initial opening of the lungs, with CPAP this is much easier. The machine can also detect when he breathes and can push additional air into his lungs with every breath. This is called ASB. Both the CPAP and the ASB can be set at certain pressures (in cms of water). The pressure of the CPAP is know as the PEEP (Positive End Expiratory Pressure). When Massimo first went in on Thursday he was on a peep of 10 and on ASB. On Friday the ASB was turned down, then off, on Saturday the peep was down to 8, on Saturday the peep came down to 6. On Monday morning the peep came down to 4 and he was taken off the CPAP for a trial with just oxygen.
Continue reading “So much better … then worse again”

Massimo came back on Monday night and Tuesday we had a lovely day with my friend Ann and her two cavalier spaniels. We went to SGH for a review by the doctor and this week’s chemo.
Continue reading “Neenars and everything”

(sent as an email)

I am sending a quick email to let you all know that Massimo came home this evening. He is still on 0.1 litres of oxygen but we are organising to have home oxygen and hopefully he will wean himself off it in the not too distant future. We are back at St George’s tomorrow for chemotherapy and to have Max reviewed as he keeps spiking a temperature (3 days in a row) and he could be heading for a fever, so they just want to check him out. The took bloods today so assuming he doesn’t show any signs of infection then he will remain at home. He is showing signs of teething but he has been for nearly 6 months already so I’m not holding out much hope, however he is spending most of his time rubbing his gums with his tongue and/or his fingers and as well as being very dribbly from the mouth he also has a terribly dribbly nose!

Most importantly, as some of you have probably already discovered, our great means of communication, Massimo’s website, is currently not working. Justin was upgrading the server this weekend and it all died. Luckily we have a back up of all the text but the photos might all have gone. I do have a print out (luckily) of the each month up to and including November (I think) so we hopefully have enough to recreate it. We hope to have something back up for you in a few days.

We saw the oncologist today at around 3 pm and the news is that the MRI scan shows little if any change in the size of the tumour. The chemo is not having the effect they expected. They will be discussing Massimo again at the next meeting next week as today they didn’t have copies of earlier scans and pathology reports etc. and so felt that they did not have a full picture from which to make any firm decisions. In the meantime there is also a big 6 monthly meeting of the UKCCG (UK Childrens Cancer Group) which Massimo’s oncologist will be attending and at which she will also discuss Massimo’s case. She is also hoping to be able to talk to someone who is a rare tumour specislist to discuss some alternative treatment options.

The overall feeling at the moment is that the tumour might respond better to one or two other drugs, however we won’t be trying any of these until after both of the meetings mentioned above. In the meantime we will continue with the chemo drugs that Massimo is currently on as they might be what is stopping the tumour from growing.

We are back on PICU at St George’s and Massimo has been off CPAP since 12.30 pm. He is also just on 0.5 Litres oxygen per minute which really isn’t very much.

Yesterday Massimo had his MRI scan in the early afternoon. We have not heard what it shows but it seems likely that they will be discussing the wee man during the oncology weekly meeting today and during the tracheal weekly meeting which is also held today. Hopefully one of those eminent doctors will call and let us know what their thoughts are! In the meantime, Massimo is still on CPAP and a tiny bit of oxygen. He is doing really well and I think that with an active weaning process he could be off the CPAP shortly. We are very keen to have him home for the weekend but this is looking less likely as the week marches on. The plan is to transfer him back to PICU at SGH at some point today, but this depends on whether transport can take him and assuming that PICU still have a bed later on today!

He has learnt to stick his tongue out, his rolling is vastly improved – he rolls more easily and goes slightly further over on each side. Apparently the physio had him lying on his tummy for a while and he got quite comfortable doing it bearing in mind that the trachy makes it something he would normally avoid doing at all costs! Yesterday I had him sitting up on my lap and I let go and he held the position really well. His muscles are getting much stronger and his willpower to learn and progress when he is well is phenomenal.

I’m in a bit of a rush, but here for your enjoyment is the best smile in the world. He had a very good day with 2 hours and 40 minutes off CPAP and he is doing very well. He has an MRI scan booked for tomorrow 1.30 pm. We had a lovely day today with Granny.

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Today Massimo went to theatre for his MLB (bronchoscopy) at 1.30 pm. The tracheal team at GOS had a good look around and decided that a slightly bigger tube (4.5) would help improve his breathing. Other than that they felt that the tumour is rock hard which hopefully means it has been “killed”. There is no prediction as yet to the degree of damage that will have happened in the area where the tumour is – this includes his voice box and the back of his tongue – nor whether the tumour is bigger or smaller than it was at the end of the last cycle of chemo as this is the first time these particular surgeons have had a look. We hope that an MRI scan might give us a few more clues and this is booked for the 29th January, although Massimo is down for a cancellation if one comes up whilst we are there.
Continue reading “And the tube just gets bigger!”

We went to see Massimo today and he was the happiest, smiliest little boy. We haven’t seen him this well in over a month! He giggled happily at his mummy’s funny noises and at his daddy’s tickles. The physiotherapist came to see him (unfortunately whilst we were having lunch!) and they spent a happy 40 minutes on the floor – off CPAP and only on oxygen – practicing lying on his tummy and sitting up. His back and neck are getting stronger and he loves to be held sitting up, looking around. He is very popular on the ward as he is so well and therefore very interactive, bestowing smiles on all and sundry. Being an intensive care unit they are used to seeing very sick babies and going by the letters received from grateful parents they do amazing work. This is the unit where Massimo would have gone had he needed the ECMO machine we mentioned some months ago. Max is clearly not in need of intensive care at the moment, but they apparently don’t have any other appropriate beds available, so for the moment he is staying where he is.
Continue reading “Very well, but still on CICU”

Massimo’s breathing on Tuesday and Wednesday was still very laboured even though he was on CPAP. On Wednesday afternoon Mr Daya (ENT surgeon) did a flexible bronchoscopy which doesn’t require a general anaesthetic nor does it bother him too much whilst it is being done. The original idea had been to put in a longer tracheostomy tube as that would help keep his trachea open as the bronchoscopy showed that, as in October, his trachea was closing together while he was breathing and it required high pressures to keep it open. Mr Daya felt that a longer tube would probably be too long for him and end up irritating the biforcation of the lungs and remain inside one or other lung. We tried a shorter tube to see if, by being further away from the part of the trachea that collapses, it would give more room for the air to move. Unfortunately this worked for about half an hour and then the poor little chap started really struggling again.
Continue reading “Musical ICUs”

Massimo’s nurse today wasn’t happy with his breathing and the fact that his heart rate was really too high for a baby who is asleep so she called the doctors in for a review at about 12 noon today. They decided that it would be best to transfer the wee man to an HDU (High Dependency Unit) bed on the PICU ward for close observation. They have put him on CPAP to see if that helps him at all. We will keep you as updated as we can.

Today Massimo was due to start his 3rd cycle of chemo, but unfortunately he is neither well enough to undergo a general anaesthetic to fix his hickman line nor well enough to cope with a dose of actinomycin D – one of his two chemotherapy drugs – as this would make it much harder for him to get over his RSV bronchiolitis. He therefore did not go over to Great Ormond Street yesterday or today and all has been postponed to next Monday, if however he is not showing signs of getting better by Thursday, then they will postpone everything another week more.

Although Massimo’s oxygen requirement has remained at a constant 0.2 (0.25) litres a minute (depending on the flow metre being used!) his difficulty in breathing had worsened yesterday and today. He is however, very cheerful and I got a few smiles today. He was very interested in a group of young medical students who came to study him today but although he looked at them long and hard he never deigned them with a smile!

Since New Year’s Eve nothing dramatic has happened except that Freddie Hewitt Ward has now re-opened and Massimo is back on his usual ward.

Massimo has RSV bronchiolitis. I think it is like bronchitis, but it is a virus and therefore cannot be cured by antibiotics. It is rife during winter and babies who are premature or have been ventilated are more prone to it than others. Often it causes so much difficulty in breathing that the babies end up on a ventilator for a while, but so far, Massimo has managed on just some oxygen.

He seems much better to us now, but it is possible that he will get worse before he gets better (unless being unwell before and during Xmas counts!). He is still due to go to Great Ormond Street on 5th January or thereabouts to have his hickman line reset or replaced under general anaesthetic and we just have to hope that he will be well enough for it.

Happy New Year to everyone!