Author: Silvia

Since I last wrote on 6th November nothing terribly exciting has happened. We had a quiet Saturday, Jemma had decided to stay in London for the weekend and we didn’t do very much. On Sunday we went to Grandpa and Mal’s for Sunday lunch whilst Jemma looked after the dogs at home and rearranged her room to her satisfaction. Max had a lovely day in the countryside and Justin and I enjoyed being pampered for the day. I am beginning to be too large for much movement although since that weekend the baby has “dropped” which has made me a little more comfortable and given me more lung capacity but made my walk a definite waddle! Continue reading “Eight weeks and still counting…”

Since we last wrote last Wednesday we have had the Dish Dash To The Max charity lunch. Other than the fact that although Massimo was there he decided to have a complete grump the whole time and only smiled after he left the restaurant, the event went off without a hitch and was thoroughly enjoyed by all who participated. Thank you to the restaurant for lovely food and for looking after us so well. The amount of money raised wasn’t a huge amount, but as every penny counts, so will all of these. Continue reading “Dish Dash and another week”

As I’m sure you can all guess things here are plodding along quietly and there really is nothing much to tell as 3 weeks have gone by since our last entry. After our scan on Tuesday 5th October, Massimo and I spent the following day with Granny and his new physiotherapist came to see us. The most important part of the session was that Hilary (the Physio) saw him for the first time NOT on PICU and extremely ill, but happy and smiling and on a mission to show off ever so slightly. We also discussed my new difficulties in handling Massimo and the imminent birth and the difficulties that this new addition would add to our daily lives. Continue reading “All quiet on the western front”

Sunday was spent trying to sort out Massimo’s room in preparation of having to share it with his little brother. We, or rather Justin, with Massimo, Jasper, Horace and I “assisting”, put up a couple of shelves and rearranged a few things. The room is beginning to look a little better but there is still a long way to go. We also popped out to Dish Dash to meet Patrick and Ana – the new owners and long-standing friends of ours – for a coffee. Unfortunately the minute I stepped out of the house I was assailed by Braxton Hicks contractions (pre-labour practice contractions often brought on by mild exercise) which made the short walk to Balham seem like a marathon. On our way back from coffee, having sufficiently recovered, the contractions started again, but this time the little boy decided to add to it by kicking me really hard somewhere very painful. J thought my yelp of pain an indication that I had gone into labour and I was too winded to respond for those few seconds of sheer panic! We have decided that this is nature’s way of telling me that I need to seriously slow down and above all cut back on certain activities like picking Massimo up, especially off the floor. The last thing we need or want is another premature labour especially not one that is self-induced! Continue reading “30 week scan”

Thursday was, for me, quite a difficult and tiring day. At first Massimo’s health visitor came to see him and we had originally planned to give him his 3rd set of baby immunisations. Due to the chemotherapy we had to stop giving Max any of his injections and we could only start again 6 months after the last dose of chemotherapy which was in February. Also we plan to give Massimo a flu jab and then his MMR. The plan is to get these done in the next 10 weeks before baby n.2 comes along and all hell is let loose!! The health Visitor came empty-handed, however as the old vaccination has live polio and it was felt that as Massimo is possibly still immuno-suppressed. or at least is a little delicate, it would be best to wait for the new vaccine. As she has taken over from Massimo’s original health visitor she hadn’t met Massimo before so she stuck around for a while to chat to me and watch and play with Max a little. Once she left, a client of mine came round. For some extraordinary reason I thought a little work would be healthy for me, so Mark kindly came round with all the paperwork so I can work from home. Once we’d had a good catch up session, both socially and professionally, I had time for a quick bite to eat before our next visitors. Continue reading “Health Visitor, Occupational Therapists and Wheelchair Services”

Last Friday (24th September) morning Massimo was taken off the ventilator and put on CPAP, by Saturday 6 am, all his intravenous drugs had been weaned completely and he was put on oxygen. By the time Justin went in in the early afternoon, he was saturating well and Justin took him off his oxygen. We were told that he could have come home on Saturday evening but he was still very grumpy as he was withdrawing from his drugs and not well enough to attend the charity event. On any other calm, quiet Saturday he would have been home immediately, but we decided it was best if he spent another night being well looked after whilst we concentrated on raising as much cash as possible. Continue reading “PICU, “To The Max” and home again”

As you have all seen from the last 4 entries, J and I went to Corsica for a week whilst Max stayed at Christopher’s. Although everyone says I shouldn’t, I do feel guilty for leaving Max behind, however as the next year is going to be pretty tough with the new baby and everything, J and I thought that we could do with some battery charging. We had a marvellous holiday and spent a lot of time in our hire car driving along tiny mountain roads that made my hair stand on end. For those who have never been, Corsica is a wonderful destination.

Meanwhile Max had lots of fun at Christopher’s. We called every night and on a couple of occasions actually spoke to the wee man himself. Apparently this created great interest in the phone followed by a peer round his buggy (both sides) to see where we were and then intense listening and big smiles. After a few minutes though he would push the phone away as though listening without us being there was really quite hard work! Continue reading “Corsica, Christopher’s and TEETH!”

Just a quick note to thank you all very much for looking after me so well. I had a great time and made lots of new friends. I hope I wasn’t too much trouble although I know my gastrostomy was a bit of a pain! You’ll be glad to know that my tummy is much better now. I’ll be coming down to stay again when my little brother is born so that Mummy and Daddy can get used to the idea of having a noisy baby. I’m really looking forward to it. In the meantime I will be coming for the occasional day visit. My teeth are giving me a lot of hassle at the moment and making me very grumpy but my bottom right molar is nearly out. My bottom two front teeth are still threatening their way through but haven’t quite made it yet!

Today I sat up unaided for a good few minutes several times. Mummy and Daddy were very impressed. i will show you how clever I am when I next see you.

Lots of love
Max

PS Marina, I hope you are having an absolutely wonderful holiday

Dear Massimo

We are having a wonderful time here in Corsica but are missing you lots and lots. We talk about you all the time. Mummy fell over at Granny Moyra’s and twisted her ankle quite badly but after a few days hobbling is OK now. Mummy and Daddy have been visiting lots of different lovely places here and managing to do a little sunbathing too. Here is a photo of the town where we are staying at the moment. Tomorrow we move on to a mountain retreat. It looks spectacular doesn’t it?

We are very happy to know that you are having fun at Christopher’s and honing your flirtling skills, these have served you well with the nurses in the past as I am sure they are getting you lots of kisses and cuddles now, too. It was lovely to speak to you yesterday and we will call again tonight.

Much love
Mummy and Daddy
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

PS I hope someone took a picture of you in your Pirate’s outfit, we would love to see it!

Since our last post, Massimo has had a grand old time at home. He seems to have developed all of a sudden and although he isn’t always doing new things, he is definitely doing things better. He has a little vtech toy with lots of buttons and things which all make noises and he now spends ages staring at it and pressing various things on it. He also has a zylophone and he is getting very good at bashing it both with the appropriate drum sticks and with his whisk – his current favourite, favourite toy. His following of things is extremely good and his attention span is definitely longer. Today he discovered his left foot (with his right hand!) and he has started rolling around the room again, but this time with renewed vigour. He is getting very good at sitting up although he isn’t quite doing it on his own yet, but he has discovered that life from a sitting position is interesting and loves to spend time playing in his various chairs.

On Wednesday we took him for his first hair cut, and once over the initial cry, he was a very good, brave boy. I didn’t realise that all children think that having their hair cut will hurt! Anyway although we didn’t have too much cut off, it definitely looks neater. On Saturday Massimo is off to Christopher’s for the week and we are sure he will be spoiled rotten by everyone there. Between now and 12th September some entries may be written by Christopher’s staff as they attempt to keep us updated with all his shenanigans!

He is still dribbling in an outrageous manner but no teeth have made an appearance yet, although they are surely very close.

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).