Massimo's story

Last Friday we spent a lovely day. In the morning we met Katy and her three terrors (they are all absolutely adorable!) and then spent a lovely hour at the Paint and Bisque-it with Maz and Maddy painting ceramics. Saturday and Sunday were spent quietly at home and all was going rather well, then Monday came along…
Continue reading “A blue episode, neenars and a trip to PICU”

This last week has been as busy as ever. On Tuesday we spent the day at home with Tatie Lucy discussing and preparing for the charity event of the year to be held in September to raise money for the Neonatal Unit at St George’s Hospital in honour of our little man. For now all I will say is that it should be a fun evening and there will be an auction of promises and a very good raffle (at least that is what we are hoping for!) Continue reading “Another busy week”

After our visit to Christophers on Monday 22nd March, we had two quiet days at home, then on the Thursday we were planning to go to the butterfly house, but that particular day they had three groups of some 30-60 schoolchildren coming, so we decided it would be wiser to postpone the outing. Massimo’s Granny was due to come and spend the day with us so staying at home wasn’t a hardship. Granny came loaded with a paddling pool and 300 coloured balls. The ball pit was put up as fast as our puff could blow up the pool and Massimo has been enjoying kicking the balls out for Jasper and Horace to chase after ever since!
Continue reading “We’ve been having so much fun!”

Whilst exercising and learning with Anne at Christopher’s we were introduced to the versatility of the stuffed snake in helping Massimo improve his positioning and learning to sit up. We duly bought a snake, largely thanks to Sheila who was going to IKEA anyway! On Sunday we placed Massimo on his mat with the snake behind him to teach him to lie on his right side. I went off to get Dad from St George’s whilst Justin got lunch ready. On coming back into the living room, J found Massimo had completely moved and was showing how pleased he was with his new snake, as demonstrated by this picture!

After a rather peaceful weekend, with lunch at Dexters on Saturday with the Viñas, Massimo and I set off this morning to go to Christopher’s with Maz and Maddy. As you can see from the pictures both Maddy and Massimo have grown enormously since this picture was taken!
Continue reading “Another magical day at Christopher’s”

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

We have come back from a fabulous day at Christopher’s and have booked in to go twice next week!

The day started badly as J and I overslept and didn’t leave home until after we were supposed to have arrived, but the traffic was good to us and Marina didn’t mind! When we got there we immediately got into our swimming things and into the pool. As you can see from the picture, this was a complete success! In the pool we held him gently at first on his back and then in a rubber ring on his front but the biggest success was in the ring on his back, as can be seen in the picture with Justin. He also really enjoyed the jacuzzi but all footage of that is on video.
Continue reading “What a great day!!!!”

Massimo now weighs 10.6 kgs or 23 lbs or 1 stone 9 lbs.

Massimo has been off CPAP since 9 am yesterday morning and doing very well so we went to collect him this morning. He is currently here, happy in Annette’s arms having his feed. I’m sure he knows that he is due to go swimming for the first time tomorrow and didn’t want to miss out.

Last Wednesday we went to Christophers at Chase (www.chasecare.org.uk) and had a wonderful day there with Granny. Unfortunately we forgot our camera and had to rely on theirs, so there are pictures and we will get copies of them tomorrow. We are off to Christophers again tomorrow where Marina, Massimo’s assigned nurse, will be there ready and waiting. The plan is for a swim in the morning and a bath in the afternoon, possibly with a visit to the messy playroom to get paint all over our hands and feet.

Massimo’s wheeze got progressively worse over the 24 hours to yesterday afternoon. The salbutamol nebuliser that I gave him didn’t seem to make much difference and at about 5 pm we took him in to PICU at St George’s to be reviewed. There they gave him two more salbutamol nebulisers and an adrenaline nebuliser and he seemed to settle and go to sleep.

In the night he had an episode of desaturation and difficulty in breathing so they put him on CPAP overnight. This morning he was happily back on just oxygen and we were getting ready to collect him. He has since had another episode and is back on CPAP. How long he will remain in PICU and on CPAP only time will tell.

Amazingly enough we are still at home. We have broken our 2 day record and have now been here for 5 days. Only one small hiccough in that Massimo had a wheeze on Saturday and by Sunday morning no amount of saline nebulisers helped so we popped in for a brief visit to PICU for a quick salbutamol nebuliser (asthma inhaler stuff in a nebuliser) which seemed to do the trick. He still has a slight wheeze but it is much better now. Of course all this happened whilst Justin was away overnight at a stag weekend, but we managed very well on our own except that the suction machine tipped over in the car and got the filter wet so it stopped working. I had to get my brother out of bed and round to PICU to rescue us with the spare part!

Quite the most interesting and important thing that has happened is that on Sunday morning Massimo took off his oxygen, a game he likes to play, and play quite well, but most significantly he did this with his right hand and then took the oxygen from his right hand with his left hand. Of course most babies learn to do this sooner but I am inordinately proud! Justin didn’t see it, of course, and I’m not quite sure he believes me.

I was just going to put the photos on and leave it at that, but I feel compelled to add a few words! Massimo is still on a fairly substantial drug regime and this will be weaned over the next two or three weeks and some of these drugs do make him quite sleepy and quiet. He is however, becoming more and more alert every day and slowly is regaining control over his muscles (the effects of the muscle relaxant are still there even though that was stopped 12 days ago). Verna looked after him last night and said he was “an angel”. The three of us are just having lots of quiet time together and enjoying every minute of it!

Massimo has been doing so well with his breathing in the last couple of days that he spent all day on oxygen today with a view to being back on CPAP tonight and then off all day and all night tomorrow. Assuming that he copes with this we hope that he will be ready to come home on Wednesday.

Fingers crossed.

On Saturday, after a fair few delays we returned to PICU at St George’s. It felt like we were coming home!

Massimo has unfortunately lost 500 grammes in the last 2 difficult weeks – the nurses noticed and decided to weigh him to check! And all his “normal” regime is back in action – feeding times, quantities, drugs, etc etc. It is also because he is better that all these things can in fact be changed back, but it is also a testament to how well he is known here at St George’s, and how important they think it is to get him back to as much normality as possible. Also all his intravenous drugs have now been replaced by oral drugs (I think this is only possible now because the quantities of the intravenous drugs have been reduced sufficiently) and today he was on oxygen and no CPAP for 4 hours in the morning and 4 hours in the afternoon. He was only on about 0.1 – 0.2 litres of oxygen which is an incredibly small amount, but in the morning he was on no oxygen at all! What a star!
Continue reading “Back at PICU St George’s”

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.