Last night was an unsettled night for Massimo as he managed to keep his breathing working well and at around 3 am the oxygen levels in his blood dropped and they gave him a little oxygen for a couple of hours. Later at around 5.30 I noticed that a lot of his ng (feeding) tube was out of his nose. The nurse tried to push it back in but as it is a silk tube, it is very soft and difficult to push so they decided to remove it and replace it with a normal ng tube. This was quite difficult to do because the tumour has overtaken Massimo’s throat and there is little room for the tube.
At around 9.30 am the ENT Registrar came and did a flexible bronchoscopy. She said that the tumour is visible below the bottom of the tracheostomy tube however it is sticking to the back of the trachea and is showing no signs (as yet) of occluding (taking over) the windpipe. The ENT surgeon came to see Massimo at about midday and decided that it would improve Massimo’s breathing if he had a bigger tube and the Registrar changed it a little later. We can see no visible difference at the moment but Massimo’s breathing seems to have been very settled today and not stretched in any way so maybe we shall notice a difference when it is under stress.
In the afternoon we went for an ultrasound of Massimo’s abdomen to ensure that there are no other incidences of myofibroma there. They will also be checking his bones for the same reason and hopefully that will be done tomorrow or Wednesday.
In the late afternoon we saw the oncologist (again) and Massimo is on the emergency (afternoon) surgical list and will be going in to surgery at some point after 1.30 pm. He will be having a gastrostomy inserted and a central line. The central line (Hickman line) is basically a tube that goes directly into a large vein and it will give the doctors easy access for administering the chemo as well as taking blood samples to monitor his white blood cells (I think!).
As the policy in GOS is that a child with a tracheostomy is never left alone, I have taken advantage of this and I have asked for an extra nurse for tonight so that I could come home and update you lot and get a really good night’s sleep as I have had 8 hours over the last two nights in chunks of 1 or 2 hours at a time!