All has been well in the Hope-Mason household since Massimo came home, until last night. A little background first though. On Massimo’s penultimate day at the hospital Helen and I noticed a little granulation (excess skin growth) around his tracheostomy stoma (hole). It was also quite red and sore and a cream was prescribed to help clear it up. This granulation can cause difficulties when doing the routine changing of his tracheostomy tube so we decided it was best to do the change with Helen here. I did the tracheostomy tube change last Friday with Helen (J was at the office) and although it was difficult it wasn’t as straight-forward as it has been. We decided to do this week’s tube change with Helen again and this was planned for yesterday afternoon. When we had a close look at the stoma prior to the change we noticed that the granulation had got worse and that it implied a complications could arise during the tube change. Helen and I made the decision to postpone the change until we could get Massimo seen by one of the ENT team from St George’s (preferably one of the two paediatric ENT guys) and take it from there. So today I was supposed to be going to SGH anyway. Things didn’t quite go as planned of course, Massimo is good at keeping us all on our toes!
Yesterday Massimo was looking the picture of health however I found that when suctioning him I wasn’t clearing his secretions completely. This was the trigger last time and I really hoped that it wouldn’t be a repeat performance and I expected a difficult night.
The night was difficult especially as J isn’t over his sore throat and mine had just started hurting and Massimo was rattly ALL night. Sometimes we suctioned and there was nothing there so we had to use saline solution (down the trachy – which I HATE doing) to loosen them. This was due to the effect of the hyoscine patch which we put on to dry his secretions. However they seemed to overly dry his trachy and not have much effect on the secretions from his nose and mouth. So he was streaming from his mouth.
This morning during his 11 am feed he started becoming very unsettled and I stopped and started his feed several times. After his feed he still was unsettled. He would not let me put him down, and of course the crying would worsen the secretions and increase the need for suctioning. I felt as though we had suctioned him every 10 minutes since we’d gone to bed. I was still in my dressing gown and just couldn’t do anything other than cope with Massimo. I tried calling a few friends and neighbours for help and eventually called the health visitors who were round in a flash. I had put Massimo on a saturation monitor at this point to check his oxygen levels and they were OK but not brilliant at 93-94% but his heart rate when asleep was too high at 160-170 – he was working quite hard on his breathing – also his oxygen levels dropped occasionally but picked up again quite quickly so at this point I knew we needed to go to the hospital. When the health visitors (Pat and Leah – I hope that is spelt correctly!) arrived Leah took Massimo from me while I had a shower and brushed my teeth. Whilst she was holding him his oxygen levels dropped and although it was due to him wriggling it worried them both enough for them to call for an ambulance just for back-up. So Massimo and I went to hospital with sirens blaring and mad driving. It was great fun. (Please note that although Massimo is unwell he was certainly not critical, allowing me to enjoy the ride!) – It was 1.15 pm
When we got to the hospital and walked in to A&E there was a team of about 4 doctors and 4 nurses waiting for us, a fair few who we had already met, which was really nice. Massimo was put on oxygen. One of the ENT team came down and she cauterised the worst of the granulated tissue. She didn’t do much as they tend to take these things gently with such small people and Massimo wasn’t overly pleased with the added pain. Helen and I did the tube change and it went without a hitch and it was decided to admit Massimo to PICU. (It was 3.15 pm) The logic behind this decision was that they would attack the problem by doing everything that actually worked last time so they wanted to put him on CPAP as a priority, and that means PICU. They are also feeding him every 3 rather than 4 hours so that he has less volume to cope with which is less of a strain on him and allows him to use up his energy breathing and fighting the infection. By 8 pm Massimo was looking so much better. His cradle cap which seems to inflame when he is unwell and which was so bad last time he was in hospital, had started to come back this morning but by 5 pm it was already beginning to fade again. J & I decided to come home and attempt to get a good night’s sleep.
I think that having been here before, both for me and for the SGH teams, means that we know what signs to look out for which indicate how well or unwell Massimo is and which help us do what is best for him. I know it seems like only yesterday that he was in hospital, and in reality it was only last week, but until he gets bigger and stronger these viral infections (coughs, colds, sore throats) even when very mild, will affect him quite badly and will probably mean a lot more visits to PICU.