Justin has decided to upgrade the website and this will also mean that in due course we can properly fix the problems we have been having with the photos not appearing as thumbnails and the old photos not being there any more. A little more patience on that one please! We hope you like the new look but any comments positive or negative, please send them directly to Justin! One change which is important is that from now on you will automatically receive an email with each and every post rather than just with the important ones as we have been doing in the past. Should you wish not to be hassled by constant emails, please feel free to unsubscribe yourself from the notification list. (The email notification and subscription bit isn’t working yet – sorry – J)
Back to Massimo. 
As you can see Massimo is getting much more control when trying to sit up. He is not so wee any more. He weighs 12.5 kgs and is a very heavy weight to lift! Since my last entry we have had a fairly busy time for me, but not so much fun for him. The only rather BIG thing is that we have decided to attempt a holiday abroad with Massimo. We are planning to go to France to stay with J’s sister in the outskirts of Toulouse. As a destination it is ideal because it isn’t far, we are staying somewhere familiar and where obviously J’s sister and brother in law are very clued up on hospital facilities and other medical requirements nearby and our packing requirements are reduced as we don’t need to take a cot or a car seat or various other “baby essentials” as they already have everything, or if need be can borrow from various neighbours, friends or family. We just need to take his medical requirements, and believe me when I say that this is no mean feat! So far we have had to organise a passport, a concentrator (the machine that ‘makes’ oxygen) and a ton of special milk to take with us. Our departure date is 21st May, which is just a few days away, and we will be back on 30th. Also, thankfully, Verna, Max’s night nurse, has agreed to come with us for part of the holiday so that she can help looking after him and so that we do get a bit of a rest too! I’m sure that after this entry, and assuming all goes as planned, we won’t be writing much until our return!
On 3rd of May (Bank Holiday Monday) Justin decided he wanted a new suit so we all piled into the car and off we trotted. In case you can’t remember (or weren’t in the UK so don’t know) it was a horrible, rainy day. Firstly we went to Jermyn Street where we found the shop we were after was closed, so we thought we would try John Lewis, which was also closed, so we thought we would try Selfridges, but the traffic was so bad in the two blocks around the shop that we couldn’t find a parking space, even with our blue badge, and we couldn’t move forward very far, so having spent a good 2 plus hours in the car, we gave it all up as a bad job and went home. Massimo was a star as he spent a fair bit of the time fast asleep and didn’t seem to mind our fruitless trip quite as much as we did. In the end, we went first thing on Tuesday morning and in half an hour the suit was purchased and we were on our way home and to the office. That lunchtime a friend came over and we chit chatted for the better part of 3 hours. Max fell asleep and I popped him on the sofa for comfort. Sue popped out to put money in the metre and her mobile rang. For some unknown reason I answered it and followed her out, phone in hand to pass her the call. The front door slammed shut behind me: dogs and Massimo indoors, Silvia and Sue outside. No keys. Only Sue’s car keys and mobile phone. Neither next door nor next door but one have any spares any more, it takes Justin 20 minutes to get home, but I called him immediately and he set off home. In the meantime I finally remembered Gabi who helps with the cleaning and the ironing and who lives just around the corner. Sue valiantly jumped in her car and off she went with directions and a very hazy description of which house she was aiming for. 5 minutes later she was back keys clutched firmly in her hands! Massimo had spent the entire time being watched by me through the front window and remaining resolutely fast asleep and totally oblivious to all that was happening around him. Never again!
The next day was quiet with a visit from one of Max’s SGH nurses (the one in the pictures with long red hair!) and not much else, but on 6th May was Justin’s company’s Re:fresh conference and awards evening. I went off to the hairdressers to make myself look a little more respectable and whilst I was out, Marina was looking after Max and she went off with his passport application form to the post office to get it checked and hopefully sent off so that it had enough time to come back again. Of course these things are never simple and, due to my passport being Italian, it needed to go with the application form. Unfortunately my passport was due to run out on 8th May so I couldn’t sent it off as I needed to get it renewed. Back to the drawing board on that one then! Re:fresh was a big night and a big success for all involved with it and J and I staggered home at around 3 am. This time Max behaved in our absence and all was well.
With the absence of a passport for Max hanging over me, on Friday morning I drove J to the conference venue to pick up stands and other stuff from the day before and I went off to the Italian Consulate to renew my passport. After a long time waiting in the queue, my number was called out and I was informed that now that I am married, and above all have a dependent, I cannot get a passport without my husband’s consent! I was given the appropriate forms for us to complete and sign and I was sent on my merry way! I returned on Wednesday, when I next had respite, and spent 3 hours there but did emerge clutching a new passport for both myself and Massimo! On Monday I went to our GP to get a prescription for anything and everything medical that we might need whilst away, including an oxygen cylinder to take on the flight with us. On the Tuesday I spent the day contacting various phone numbers in France trying to organise a concentrator (a machine which sucks in air and blows out oxygen) for our use whilst we are there and thus avoiding taking ours (which belongs to BOC) and which other than being cumbersome, weights over 25 kgs. Wednesday I was at the Italian Consulate. On Thursday I went to IKEA with Lizzy and Max to buy Max a big boy’s bed. On Friday I wanted to lie in a big exhausted heap, but it was not meant to be as the week was also plagued by gastrostomy problems.
On Monday morning when we took over from Verna she had had a bad night with the gastrostomy leaking everywhere. Massimo continued to snooze so J put him in his cot in our room and I left him in peace. When I looked at him after my shower I noticed something was odd with his tummy. I looked closer and noticed that there was no gastrostomy tube in his stomach. I found the tube lying next to him on the bed. Quite calmly (I thought!) I went to the emergency bag and got his spare, albeit a slightly smaller one (a 16Fr rather than an 18Fr) and inserted it. Luckily all went well and the tube was in the correct place and the hole hadn’t closed – they are renowned for being able to close really rather quickly. The new tube didn’t leak on Monday, but it leaked a little on Tuesday. Then on Wednesday Max coughed it out just whilst Annette was busy changing Max’s trachy ties – a tricky enough procedure especially when done single-handedly. On Thursday, Max coughed it out again just before we were due to leave for IKEA. On Thursday night it came out again, so I put a fresh one in just in case the balloon of water which holds it in place was leaking or faulty causing all the problems. On Friday morning, when I went to see how Verna’s night had gone, Max managed to cough it out a further 3 times before Verna made it out of the door. So that morning instead of heading to Christopher’s we went of to SGH and a spent a few hours on Jungle Ward.
On the day surgery ward we changed his gastrostomy once more but this time to a much smaller one (a 12Fr) in the hope that this will encourage the hole to close properly around the new tube. We put lots of water in the balloon in the hope of holding it in place, and a particularly nice dressing on top, in the hope of helping it stay in place. Whilst we were there he seemed to develop a temperature and his breathing had got worse over the last few days so we decided to have him reviewed by a doctor. Two doctors came along and a viral infection was diagnosed with plenty of fluids, ventolin nebulisers and rest prescribed. The ventolin has seemed to work, but he had a bad night with Verna on Saturday night and as he seemed really chirpy and OK on Sunday (after I met the girls for brunch and Max refused to smile at anyone!) we are hoping that it was the worst of it and we can now get ready for France.
Congratulations on getting to the end of this marathon post, and I promise I will try to write more regularly, if only to keep Max’s fans quiet!