YAY, Sam has had a much better day - phewf! It started early with a nebulizer at 8am followed by physio chest percussions - this takes around 30 mins and mostly under duress. The physio lies him on each side and cup their hand and firmly pat/thump his lung, being monitored by listening through a stethoscope. In between the patting, he is sat up to cough up goop. If he refuses to cough he is suctioned to get lose goop out. Being 4 he is now old enough to figure consequences and choices. So the chats between the physio and Sam have gone something like this:
'Sam are you going to cough?'....silence and a defiant little boy shaking his head....'ok, then I have to suction you'... said whilst waving a long tube infront of him.....5 second delay before Sam starts coughing. It's quite entertaining to watch him making choices in his care now. I learnt today there is no use asking him if he wants something done as he just says 'No'. Rather the physio said give him 2 choices, 'Do you want me to drain you sitting up or lying down?', 'Sam you have to have the face mask on - do you want to watch a DVD or play with your cars'. Then when he is set up with his choice he knows if he takes off the mask he loses what he chose...... it worked so well and he was such a trooper today. Honestly that face mask is horrible but I am so proud of him keeping it on all day, adjusting it back over his nose and mouth when it slips - he's been a real star.
The day was so full with 3 hourly physio, various teams popping in, a surgical visit, phone calls from radiography about other procedures he needs, trainee Drs wanting to practice their exams on Sam etc..., so we are both tired, but happy - he's happy cos he feels better and we're both happy because his Dad came up for dinner! It was so nice to spend time with my husband and to just talk about normal stuff, plan the week, sort out misunderstandings (living via email and text doesn't help!), find out what's going on with each other and be loved unconditionally even though haggard, slightly grumpy frumpy and frazzled are appropriate words right now..... now that's true love!
Today Sam is down to 4 litres of 02 humidified which is an improvement. He has also been clearing out lots of goop from his lungs, so it is good to hear and see the nasty offending goop being dispelled!
The plan is for more of the same tomorrow - steroids, antibiotics and physio. Sam is asking to go home, but he is still a way off that, but definitely on the way! As he is doing well, we've weighed up all the bits to our puzzle and have decided I shall escape Planet Starship for the day, leaving Sam in the capable hands of a dear friend that is coming to hang with him. He will enjoy the break as much as I no doubt! I will do some work, take Jas to an orthodontist appointment, pick up a bale of hay for our new hens, go for a run (I'm working on the run-once-a -week, run-a-marathon training plan currently), make dinner, see my girls and drop them at their afternoon activity before heading back in to Starship for the night!
I leave you with a photo of Sam having his chest physio - only having Dora playing on our laptop does he stop fighting and let them do what needs doing.... but he puts up with so much, I'm so proud of him.
Thank you so much everyone for your care!