It's quite hard writing the blog as I am conscious that I want you to like me.... but sometimes if I really wrote what I thought or had happened and my response to it, I really don't think you would!
I had been fuming and plotting my words all afternoon, looking forward to rant and spew forth my justified frustration and sarcasm and blah. But as I stretched my hands and cracked my knuckles flicking open my laptop, I feel uncomfortable. With hindsight I could often do things differently or better. So tonight I choose to not rant - not because I think you won't like me/what you read, but because with a rant it tarnishes those unfairly as it is only my perspective..... my tired, 'protective mother bear' perspective. And in the world of social media that we now live far too many people tarnish others with no accountability for the writer and no right of reply for the person. Instead of having a tantrum in arial font, today I chose to take my rant to God, knowing that he gets it all ... and in the quiet post-rant, His peace comes and I have renewed hope and joy for the week ahead, in spite of it including a procedure for Sam under GA! Discussions that have been productive and hopefully helpful for enhanced care for all patients have also taken place, so I'm happy with that.
Last week Sam was started on two strong antibiotics. On Thursday he had a chest xray which showed that his lungs were in worse condition than the xray 3 weeks ago. This was disappointing and very concerning and now the Respiratory Team has stepped in to take over his care. This we are relieved about and had been pushing for. Basically the pneumonia (which was the catalyst for this admission) should have run its course and be at a much better stage - but it isn't. The concern is why he still needs oxygen every night and why his lungs are not improving. He runs around all day and seems fine apart from an occasional fruity cough. As soon as he is asleep the lungs seem to get plugged up with gunge and he needs oxygen. They are not prepared to let us home (even with oxygen for at night) until they have figured out more.
The plan is hopefully tomorrow or Tuesday he will head to theatre for a bronchoscope and bronchial lavage - looking inside his lungs/bronchial tubes and then washing them out with saline and suctioning out the goop. This is a procedure often done on kids with Cystic Fibrosis, and various pamphlets have been appearing in our room with this as the heading. Also Bronchietasis is a word being bantered about. Sam doesn't have CF, this was genetically ruled out when he was 2, but he is presenting with similar symptoms.
It's not great news, although it's hard to accept it when you have a hilarious happy boy that is charging around like nothing is wrong! His memory is still amazing and he does his own ward round... he literally remembers every patients name, their parents names, if they have a dog, who is there nurse today etc. He will walk around and go to one room and you can hear him shouting into the room (he knows he can't go in), 'So-and-so have you had your antibiotic yet?...has Helen your nurse come and done your obs?'. He also doesn't talk any more - everything is shouted at full volume, so it really does seem crazy he has an issue with his lungs!
Over the weekend Sam and Francis came home each day in between antibiotics. It was really fabulous to have our regular Sunday pancake breakfast and then head off to church. Sam was so happy to be with both his sisters again and it was the first time in 4 weeks we have all been at home together. At one point Sam dressed up in his police play outfit to arrest a sister - the charge was 'having a bad attitude'.
I brought Sam back in for his 4pm meds and am sleeping over with him. When Francis stays with Sam they call it 'Bro-time'. I asked Sam tonight what do we call it when it is Sam and Mummy hanging out? He looked thoughtful for a second then said, 'Gro-time - Girl and Bro'. So tonight is Gro Time and tomorrow is day one of Term 3 at school. Sadly Sam won't be making school. He has another week of antibiotics so we are hoping that once this wash-out procedure is done we can time his antibiotics so that for the rest of the week we can leave early with Sam and get him to school for most of the day to keep his life normal and so that I can go to work. Clearly if he was too sick to be at school we would keep him here, but the medical teams are happy for this option.
A final shout out to the fabulous play therapists and liver nurse specialists. These guys are legend, as they think about Sam.... Sam the little 6 year old boy, not Sam the 'insert specific anatomy here'. Sam will need daily antibiotic nebulisers when we finally head home. When we were first admitted it required 3 of us restraining him to do this. The play specialists have been involved and now Sam is asking for the nebuliser.... for it is no longer a piece of medical equipment, but when he puts the mask on he magically turns in to a fire breathing dragon and scares everyone that comes into his kingdom! The change is amazing and I am so grateful for their cleverness and willingness to make his necessary treatment into a game and not a necessary evil.
I leave you with a photo of Sergeant Sam taken before his first arrest of the day!