Month: September 2004

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”

Friday night was very difficult. As has happened before, Max’s breathing became very laboured when asleep, and combined with his distress from teething, he really was not coping very well. We got very little sleep, and debated on several occasions throughout the night whether we should take him in to hospital. In the end we did not and when the little toad woke up he was grumpy, but breathing better than he had been over night. After a snooze in the afternoon, Max was much happier, and more or less his normal cheery self.

Saturday night we had Verna Max’s respite nurse, and when she turned up at 10.30, the wee man was still up entertaining us. Once he went to bed however, we were back more or less in the same situation, and Verna had a night very much like ours the night before. She was quite worried and spoke to the community nurses when she left in the morning. They called a little later in the morning and we agreed that we would take Max in to be reviewed. We cannot just take Max into PICU, so went in to A&E at about 3.30. We had a frustrating 3 hours or so, when we were seen by 3 different doctors who all seemed to agree that Max was not really too ill, but that maybe he should stay in for observation. They all also agreed that it was possible that he had a viral infection and that there happened to be one doing the rounds. They said however that he was not ill enough for PICU and that he should go up to the regular wards. We were quite adamant that Max would NOT go up to the regular wards – he would either go to PICU or come home as the wards are simply not equipped to look after Max properly. It eventually transpired that there were no beds on the wards and so Max was, finally, admitted to PICU at about 7.30 pm. Continue reading “A tricky few days”

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

I have been very busy over the past few days. I spent yesterday afternoon painting some beautiful pictures for you both. As usual I enjoyed painting myself as well as the paper. I now love the sandpit! I have had a few visits with some of the other boys staying here and have learnt that sand can be fun but only when the sun is not shining on me. However Marina did seem to get a bit stressed when I kept trying to put sand in my trache and of course I’m not going to wear my swedish nose! Sadly I have been unable to swim as it has been a bit green and smelly but hopefully that will be fixed soon. My gastrostomy has been leaking loads and making my tummy sore. So yesterday (wednesday) Marina had a look and noticed that the tubing actually had a hole in it – no wonder!!! So after much umming and urring she changed it. Now it doesn’t leak and my tummy is getting better – although I have got a random stitch left in my skin!!
Anyway I am having a lovely time but looking forward to seeing you both on Sunday

Lots of Hugs and Kisses
Max xxxxx

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!

Dear Everyone,
I have been staying at Christophers since Mummy and Daddy dropped me off on Saturday. What fun I have had already, swimming, playing on the swings and general madness. I dressed up as a Pirate on Sunday for the fun day with my own sword and piarte hat and chased Captian Hook around the garden. However the weather is so lovely here that I soon had to loose the fancy dress for some cooler clothes. I met some famous children’s TV presenters and saw some lovely animals rabbits, chickens, goats and donkeys. My favourate activity was flirting with all the other lovely ladies that are here. The most eventful thing that has happened was when Marina arrived on Sunday to the fun day and noticed that I had a flat tyre on my pushchair!!! She attempted to pump it up but actually made it worse so then we had to go and seek the help of another sensible Daddy who finally managed to pump up my tyre (women! they will interfere). Anyway Mummy and Daddy I am having a lovely time here. So don’t worry to much. Hope you are enjoying the break and relaxing. Can’t wait to see you soon. Missing you both (but enjoying having constant attension from all my ladies).

Love Max

xxxxx (kisses for Mummy) xxxxx (kisses for Daddy)

p.s. Marina says Hi

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.