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…
Monday morning Verna said that Max had had his “best night ever” and we were preparing to go to the Early Years Centre in the afternoon, but at around 12.30 Max’s breathing started being a little wheezy and quite noisy, then he started getting upset. It appeared that he was trying to poo and it was all too much for him and he started panicking. His colour started going a little and so I put him on the changing table, turned his oxygen up to 2.5 litres per minute (instead of 0.2!) and as this seemed not to make the slightest difference to his colour, I called an ambulance. It was the longest 15 minutes ever! Waiting for an ambulance alone is horrible! I was trying to get ready for them but wanted to cuddle Max to try to calm him down because I knew that that was the only thing that would really help him. Eventually they arrived and I walked out of the house with Max in my arms saying, I need that bag, that bag, oxygen, and please slam the door behind us! They were ever so good and one of them said “you’ve clearly done this before!” If she only knew!
By the time we got half way to the hospital, Max was so tired from panicking that he just had to stop, and as soon as he relaxed even just a tiny bit, his breathing started to improve and his colour started coming back. By the time we were in A&E Resuscitation he seemed really OK, but his chest was very wheezy and they gave him a Ventolin nebuliser, which did help to a certain extent. Up to PICU, once his bed was ready, and he seemed well enough really to come home, but we left him in overnight just for observation. The following day we found that his secretions from his trachy were really thick, yellow (instead of white) and very blood stained.
We took the opportunity of being in hospital to meet up with his consultant to discuss where we are. Nobody had expected Massimo to make it this far, so we all felt it was probably appropriate to get him assessed by his oncologist and the tracheal team at GOS and to take another look at how his tumour is doing.
I took him out for a little shopping expedition and his secretions didn’t improve at all and his breathing was wheezy again, so I was less than happy about bringing him home. PICU said they were happy to keep him in and so we settled him down on his bed. He promptly fell asleep, with no wheezing and looking perfectly fit and healthy! In the night he managed to pull out his gastrostomy not once, but twice, and so he had a fairly disrupted night, but by the following morning (Wednesday) the antibiotics had obviously kicked in as his secretions were back to normal and he came home in the early afternoon – we had Riley’s first birthday party to attend in PICU before coming home!
J’s Mum came to visit on Thursday which was lovely, but I felt completely washed out and J had woken in the morning with a sore throat. I must have looked pretty worn out, because in the afternoon J’s Mum sent me to bed and looked after Max. J came home early and that evening we were all in bed by 8.30! It did me the world of good and I was happy and energetic for our visit to Christopher’s on Friday. J spent the day in bed. At Christopher’s Max seemed to be tired as he had two very long naps, so we only really managed to go swimming – but we did use his new swimming trunks which looked very smart indeed!
We’ve had a quiet weekend so far, J is feeling much better and Max is fine, except for a pretty marked wheeze. Sorry for the lack of pictures but believe me when I say that he is growing fast and is getting a little big for that car we gave him for his birthday!