After Massimo’s fabulous day at Christopher’s we had a fairly unsettled night with him getting upset in his sleep and his breathing being very wheezy. On top of this he has now developed an impressive double chin which makes keeping his oxygen on at night rather difficult as it pops off easily as he moves around in his sleep. Without his oxygen at night his oxygen levels drop, the monitor goes off, and up we get fumbling to put it back on in the dark. Morning comes and Massimo is bright as a button whilst J and I are looking a little worn around the edges! Saturday was actually our 5th wedding anniversary and we left Max in capable hands whilst we went off for a nice lunch at Chez Bruce. Massimo had a lovely day and smiled at all and sundry. That evening when we went up to say a last goodnight before going to bed, Verna was already looking after him, he started getting very upset (but not opening his eyes) and began to find it VERY difficult to breathe. His increasing inability to breathe meant he began to panic and go blue around the edges. We increased his oxygen and I picked him up for a cuddle but nothing seemed to help him until J held his tracheostomy tube and pushed it down really quite hard. We have used this tactic before and it seems to push something out of the way and enable him to breathe much more easily. He calmed down immediately and we went to bed. He repeated this performance for Verna about four times in the night.
Sunday we had Tommy, Lizzy and Zoe over for a late lunch and Massimo got loads of cuddles and attention. A relaxing and fun day was had by all. That night, Verna was on duty again and Massimo had another very unsettled night. Although his breathing didn’t seem to block off, he appeared very unsettled in his sleep throughout the night, even though he was given Ibuprofen and chloral to help settle him. Monday morning at 6.30 when Verna gave me the run through (an unusually early start due to childcare needs) I started being quite concerned. He was settled at that point but he seemed to need his trachy to be held down for his breathing to be anywhere near normal. I took him into our bed thinking that at least I could lie down whilst holding his trachy. During the day recently, he seems to be breathing better without his thermovent (aka swedish nose – the filter that sits on top of his trachy), so I decided to try removing the thermovent which the oxygen tubing attaches onto, and just hold the oxygen somewhere near his trachy. This seemed to work really well and eventually I left him sleeping whilst we got up. J and I had discussed the need to take him into hospital to have him reviewed as things seemed to have got just a little too complicated. So J was working from home so that he could help us get to the hospital. I made a few phonecalls and waited for someone to get back to us. At some point, Max’s monitor alarmed and I went up, assuming his oxygen tubing was just out of reach of his trachy, to find instead, that he was very upset and quite panicky. I called J who has a much better knack with Max’s trachy that I seem to and he did the pressing down which worked instantly. If we needed a clearer indication of the need for someone to have a look at his airway, we got one.
After various calls back and forth with Massimo’s community nurse we decided that as he wasn’t an A&E admissions case, and the day ward was full, that we would come in and be reviewed on Nicholls Ward where various doctors would be expecting us. We went in in the early afternoon and by 5.30 pm Massimo was admitted to PICU. The paediatric ENT registrar came to see Massimo and he had a look down his airway using a flexible bronchoscope. He saw what he thinks is a granuloma (a mass of inflamed granulation tissue) which is on the anterior wall of his trachea (ie. the front of his neck). This means that when Massimo is lying down to sleep this growth flops down further blocking his airway. It was decided that Massimo would stay in PICU for the night and we would discuss things further with Mr Daya, the ENT surgeon who knows Massimo very well and decide what to do then. He had quite an unsettled night that night, and again Ibuprofen and chloral were given and he eventually settled in the early hours of the morning (goodbye routine!)
Mr Daya came to see Massimo this evening and although the easiest and probably correct course of action would be to insert a longer tube of the same size, Mr Daya is unwilling to do that without doing a proper bronchoscopy in theatre first. The problem is that no-one knows what is actually going on in Massimo’s trachea at the moment and also in order to be sure that what we are treating is a granuloma and not an extension of the tumour requires a bronchoscopy. The one time we fiddled with his tube without it being in theatre was back in October where the constant changing of the tube eventually caused too much trauma to the area and Massimo was very unwell for quite some time. Unfortunately there is no available slot for an MLB (microlaryngal bronchoscopy) until next Wednesday when he is due to go to theatre anyway.
The problem was then relating to how we were going to keep him breathing well until then. The pushing on the trachy, which does work could also be irritating the granuloma more and causing it to get bigger, or it could cause bleeding, or it might stop working as a solution. This means that it would be quite risky to have Massimo at home. In PICU they can use CPAP to keep his airway open and that might help him to settle better during the night. The thing is that during the day he is so well, it is such a contrast. However Max’s respiratory consultant explained to us that when asleep the tone of the airway changes and therefore it makes perfect sense to her that he would have more trouble during the night than he does during the day. For now, the plan is for Massimo to stay in PICU until after his op next Wednesday.
On a lighter note, Massimo’s great aunt came to visit today and she was most impressed by the change in Massimo, how he looks so much more like a toddler than a baby now, how well he is holding himself, how good he has become with his hands and how lovely his hair is! She also brought two very lovely gifts which he accepted with huge smiles. (Please note that all the nurses on PICU have also been saying this about Massimo!)