As I've wished Sam wasn't unwell and we were at home together as a family, I have stared into the faces of new parents who are frightened, uncertain and exhausted, and it's like looking at myself in a mirror seven years ago. And it's been an honour and a privilege to walk alongside them and to listen to their pain and help them adjust to this weird and unknown world of medicine in some small way. As Sam runs around the ward chatting to people, smiling to other kids who have tubes hanging out of their body, you can see hope begin to form in the eyes of the fearful and they smile back.
2 weeks ago Sam had a respiratory clinic to check out how his lungs were doing, as he has a long anaesthetic to endure for a bladder reconstruction on 12 July. Sam had been at school and seemed fine and well and running around like normal. We saw a different Respiratory Doctor to normal and he seemed really concerned whenever Sam coughed - on the 'Scale of Sam' I was quite flippant and telling the Dr he was really fine, that it was nothing compared to what he puts up with and he was fine. Well the Dr insisted on an xray, so we obliged then went home. You know it's not good when the consultant calls you on a Saturday at 3pm! He was checking out Sams chest xray and wanted us to come in to admit him. So we packed up and headed in - Sam seemed happy and well, but just a little cough every so often. Further xrays and ultrsounds showed that he had a pocked of fluid in his chest cavity, that was between the outside of his lungs and the chest wall, putting pressure on his lungs. The respiratory team also formally diagnosed him as having bronchiectasis - this is a chronic lung condition that requires twice daily chest physio to help the lungs expel the infected mucous that the lungs are creating. So between extra fluid IN his lungs and OUTSIDE his lungs, he was doing exceptionally well at compensating and just getting on with life. About this time I was feeling rather embarrassed and horrified at my flippant, 'he's just fine' throw away comments, when so clearly he wasn't.
So for the last week he has had physios show up to his room twice a day to do his 'bubbles'. This takes about 15 minutes.... or 40 if Sam is in a chatty mood, which also doubles at distraction so he hopes we forget what he should be doing! Because he is very cute (and has a fabulous memory) he can remember a conversation with a physio from last week and he will ask them how their childs birthday party was or if they got the new tyre for their car that they mentioned needed replaced last shift! Today we were giving him stickers if he could do a set of bubbles without talking!
Sam was feeling pretty good, which meant that he was up and about during the day doing school work and playing, when time allowed. Here are some shots of him doing just that..... and then when he got really bored I helped him with the remote for the bed and we turned it into a slide - how cool to have a slide in your bedroom! I must admit I was a little nervous as didn't really want a head injury thrown into the mix, but we managed to avoid any catastrophies, although got a few odd glances from passers by as they heard his shrieks of delight and peered him to see him tumbling down his bed!
Last weekend our eldest daughter turned 15! We wanted to take her out for dinner, so Aunty Sarah came and hung out with Sam so we could take her out - we had a lovely evening with our young lady and it was great to be able to relax knowing that Sam wasn't alone in his room - he too had a lovely evening, Thanks Aunty Sarah!
Today I wheeled Sam down to theatre again and he was very brave, even though he was scared. He took his trusty bee to comfort him. The radiologist explained that they would put a drain in between two ribs into the sack of fluid, with ultrasound guiding them. They guestimated that there would be around 100 - 200 mls of fluid. There was around 450 mls. He came back to the ward waking up happily enough, but with a drain stitched in to his side. The drain will be in for the next 72 hours to see what further fluids drain. As I write another 120 mls has drained since he came back from theatre 5 hours ago. This is really a large volume of fluid that has been pushing up on his lungs. There are various theories as to where it has come from and what to do about it.... but the teams are waiting for lab results, chemistry and formal findings from the CT scan and procedures taken place this last week to make a plan for the way forward. The most likely is that his bowel has been leaking chylos fluid (liquid long chain fats) from his lymphatic system. Apparently 50% of the milk in his feed is a medium chain fat. These fats are moved about in his blood. 50% of the milk is long chain fats and these are broken down and moved about his body in the lymphatic system. The lymphatic system moves about in the body but isnt constrained in veins, but moves by pressure and osmosis, so can leak out, whereas a vein only leaks out when it is broken. I do know that some medical professionals read this blog - so the above was written so they can giggle at how a simple parent interprets very complex bodily functions... and is why they get paid the big bucks!
A theory for the large leakage, is due to the extra milk that he is getting in his intestine and that it isn't coping with it and the long chain fats are leaking out. The gastro team changed Sams milk feed 3 days ago so that it now has 75% medium chain fats and 25% long chain fats, which means that more nutrients will get moved about in his blood leaving only 25% long chain fats that could potentially leak out.... again medicine for dummies right there, but it helps my little brain process the big words I hear.
The good news is the immunology team re tested him for various substances he was allergic to - eggs, lactose and soy. He came back negative for them all! Woo hoo! This is huge and gives the Gastro team a lot more options for feeds, but they will wait til the various findings listed above are laid out.
I leave you with photos of Sam making sure that Bee was okay post op today - As Sam was being checked, Sam was checking Bees temperature and blood pressure - Go Nurse Sam!
Tonight we go to sleep with more questions than answers: 'Where is all the liquid coming from? 'How will it stop?' 'What feeds will work on his gut?' 'Will he have to go back on TPN?' 'Why does Donald Trump have such bad hair?', 'Will his lungs be strong enough to cope with a long bladder reconstruction op next week?' 'What will the school holidays look like for the girls?' So many questions, yet total peace that God has a way forward and that He is with us and will sustain and help us.
Ahhh... it feels good to be sharing Sam with you all again. His life is amazing, he copes with so much and he continues to love and smile and be a joy. Thank you for being a part of it.
Thanks friends and welcome back.