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.