Friday, July 22, 2016

Dye study

Hi everyone, Francis here this time - my turn to update you on the latest news from Sam as I've spent the last two days with him in hospital while Shirley had a well-earned break.
Today Sam had a dye study to try and discover the source of the leak into his lungs, it involved the unpleasant experience of radioactive dye being injected between his toes on both feet, and then waiting for it to track up the body to the chest.  What was meant to be in and out in less than an hour, ended up 3 hours as the dye took a lot longer to get to the chest than expected.  Sam was an absolute star, he had some anaesthetic before the injections and then had to lie still strapped into the scanner for hours. Fortunately he had endless episodes of Rory the Racing Car to keep him distracted, but everyone was so impressed with his bravery and patience during such a painful and drawn out procedure.  I was very proud of my 'bro', he was such a little trooper today!

Unfortunately the study results were inconclusive so next step is an MRI on Monday, followed by exploratory surgery the following Monday with a camera to try and find the source of the leak.  So no end in sight for this admission but Sam is dealing with it in his usual cheery and entertaining manner.





Thursday, July 21, 2016

Domino Davy

Our bodies are complex and each system is interwoven with many others... so when one system is challenged with Sam it seems to topple the next system... and the next... and the next..

On Wed a Multi-Disciplinary Team meeting was held - 2 Surgical teams, Gastro, Respiratory, Home Care Team and Family Options (funding).  There may have been more, but I chose not to go, as the issues with Sam are all new to me: lymphatic systems, lung/thoraxic etc, and I was happy for the experts to discuss and get back to me.  The teams are thinking hard about what further investigations need/can be done to help them glean the information they need to formulate a plan to help Sam.  

Sam has bounced back after the surgery, and if there were no other issues we could have been discharged today, with just a catheter in situ for the next 3 weeks.  This in itself would have been quite something to manage, as I'm not sure we would have coped having a urine leg bag on during school.

However it is the challenge of his lungs, fluid imbalance and nutrition that is very difficult. Tomorrow Sam is booked in for a nuclear medicine study - a substance will be injected into the spongey pad in the base of his foot and under live xray they will trace how the lymphatic system copes and where the fluid flows.  It will be uncomfortable and frightening for Sam as it is not done under sedation.  The hope is that the flow will show up any obvious 'holes/breaches' which may then have a simple surgical fix.  We have been warned that sometimes nothing spectacular is seen.

If there isn't anything obvious, it may mean playing with various meds, removing the chest drain and helping Sam's body get back to an equilibrium - this could be very slow and long and would need to happen in hospital.  So as are near the end of Week 4, we are uncertain if we are near the end, middle or start of our stay.  As I was updating the girls, I was waiting for the usual groans and eye rolling... when Miss 15 pipes up, 'Well the good news is we get yummy food!'  Some very kind people have been dropping in meals and they also happen to be far superior cooks than me, so the girls seem quite chipper at the prospect of a few more weeks of 'meals on wheels'.  I try to get organised and I use the crock pot and pre prepare lots of food. I am also trying to teach the girls self sufficiency with some cooking skills.  One day 2 weeks ago it turned pear shaped and I got a call from a distressed Miss 13 who had boil dried potatoes and a charred pot and smoke filled room was the result.... so they do really well inspite of the upheaval and we continue to be thankful for them and proud of how they adapt to this life.  We are so appreciative of the practical support we receive - Thank you so much!

Sam continues to entertain who ever enters the room.  Yesterday he was very sad when his school friend fell ill and was unable to come for the booked visit - he was sobbing and so sad and hugging me.  The gastro team walk in and with their medical heads on look concerned, probably assuming that a tube had been pulled or he was in pain.  I explained that Sam was just disappointed.  Sam pipes up, 'Is that the same disappointment that you feel when you fight with Dad?... you know how you argue lots and you are disappointed?'.  It was hilarious, and I explained that we don't 'fight' but creatively discuss.... and yes we do feel disappointed when we don't agree.  It was a very funny moment.

The respiratory team walk in about 30 mins later and are explaining the intricacies of Sam's chest drain to me and the problems they have to solve.  The consultant turned to me and said, 'If I put a drain in you. you too would leak lots of fluid as it is the point of no resistance'. Sam chirps up, 'Why would you need a drain Mum?' I said, 'You have lots of drains, why can't I have one?'.  Sam said, 'Cos we are different.'  'How are we different?' I ask.  'You have boobs', Sam replies. Sam was looking confused as laughter filled his room, because in his eyes he had just stated a fact!

We are trying to get Sam sitting up and standing/walking as much as possible.  His mobility has taken a hit after a week in bed.  He has a great little chair and a room with a view, so he has done well to be up with tubes/pumps/poles arranged around him.  



Last night I slept at home - it was so quiet! I am home again tonight with the girls and it is so nice to be with them.... I have missed them.

Tomorrow is a big day in Sam's world - we are hoping and praying for: Sam to cope with the procedure; for clear images to help the teams know what to do; for a treatment plan; for Sam to continue to be happy and peaceful stuck in his small room; for ongoing good dialogue between the many teams that work with Sam.

Thanks so much for reading. XX

Sunday, July 17, 2016

Baby Steps

Sam stood up today for the first time since Tuesday morning!  He was a bit dubious about the idea, but I think he figured out quickly that he had no choice in the matter with me and his nurse sorting all the tubes and rearranging him and the bed to make it happen!  He was definitely wobbly and nervous, but with our physical and emotional support he stood for about 3 minutes.  



Last night was difficult as his bladder drain blocked, which was noticed by the nurse when she checked his drains each hour, and it had stopped draining.  At around 1am he was looking quite rotund and a surgical House Officer came and we changed the drain - sounds easy enough, except Sam was very unimpressed with the lights going on ,'Go away I want to go to sleep'.....'Me Too!' I told him, so we just need to get on and do it!  He was grumpy and sore and it required restraint.... So picture me in my Jammies (black with red and white hearts - on special at Countdown!) lying across his legs and holding his arms whilst 2 yellow gowned 'minions' - 1 a surgeon and 1 a nurse changed the drain. For a boy whose lungs are struggling, you would not have not known it last night.  As soon as the drain was changed it drained, his screaming subsided and his stomach visibly deflated and went back to sleep!
 
Sam's pain has been so well managed this surgery, which I am truly grateful for.  The morphine pump was turned off today, but the IV line was left in so that if he needed a bolus we could give him one - it wasn't needed!  He has been sitting up, moving about, pushing his legs up and down and he has coped fine.

Francis and the girls escaped hospital land and experienced Hobbiton - it was lovely talking to the girls about what a great day they had had as they bubbled away with stories of Oak leaves, movie sets and all things Lord of the Rings.

The huge challenge ahead for Sam, and the medical team, is the chest drain and the large volume of chylo still draining from this cavity - around 400 mls in a 24 hour period.  This has dropped off a little in the past 24 hours, but it needs resolving.  

Slow and steady for us - we will aim to get Sam up more each day whilst the medical teams grapple with his oxygen requirement and chest drainage. 

I am hoping for no blockages tonight and for us both to have deep sleep.  I am tired, but I have needed to be here.  Sam is now happy for Dad to stay - another great sign he is on the up!

Saturday, July 16, 2016

Slow and steady

Sam had a great nights sleep yesterday and woke up quite a bit happier, but as soon as the physios had been at 8am and made him work hard to get his lungs working, he was exhausted again and trying to sleep.  Sleep is difficult when teams of people are flowing through your room to review you.  The surgical team were happy to remove the main urinary drain and just leave the one mitrofanoff drain in.  As soon as this was out the pain team agreed that it was time to withdraw the epidural. 

Around 12:30 I negotiated, begged, bribed and grovelled with Sam to allow us at his groin area so we could remove the dressing and drain.  I am so thankful for the medical invention called 'Remove'.  The drain came out easily.  This meant that the urine from the right kidney is now flowing into his small amended bladder and can only be drained  out through the mitrof. drain, or if that doesn't work it may leak out the normal route - his urethra.  We are really delighted that it is draining nicely out the mitrof drain and is perfectly clear, without any blood staining.  This drain is to stay in for another 2 weeks.

After several more people through the room, it was decided he needed a blood transfusion as his haemoglobin was very low.  This was subsequently given over a 4 hour period. 

At 11 pm  tonight I held him whilst the nurse took out the epidural plug in his back.  He has now fallen back to sleep.  He has a continuous morphine pump runninng and the nurse can also give him boluses of morphine if it is deemed necessary.  Sam has woken twice in pain this evening, so he has had 2 extra lots of morphine and settled again.

Surgically everyone is pleased with the progress he is making in regard to the surgical sight, healing and urinary drain.

The concerning things are the ongoing leakage of fluid from his chest drain.  As the volume isn't slowing at a desired rate, tonight he was started on a drug called Octreotide.  This is given over a 24 hour period via IV line.  Thankfully it can be given alongside morphine.  I think the plan is to keep him on this over the weekend and reassess everything on Monday.  I did hear a rumour this drug may need to be given for 1 - 3 weeks.

Currently Sam is on 2.5 litres of humidified oxygen, morphine continuously and the new drug.  He also has his chest drain and two urinary catheters draining into drainage bags. He is having his usual amount of oral feeds.  Unfortunately the change of feed to a MCT (Mono-chain triglyceride) has not brought about the desired affect of reducing the chylo fluid leaking.  It is still uncertain where it is coming from and the teams are doing what they term as 'academic exercise' to see how they can best locate it - apparently it is difficult to find, and with Sams various drains and scar tissues etc, it will be even harder.

Today was Francis' birthday, but we will celebrate it tomorrow when he will come in for the day with the girls. Normally Francis and I share the sleeping over in Starship, but on this admission Sam has been very determined that he wants me to stay - this is not a reflection on his total adoration for his Daddy, but more an indication of how poorly he is - nothing like Mum when you are sick.

Today we also had a lovely visit from friends and it was so nice for Sam and I.  It was very sweet that Sam made the comment after they had left, 'They came a long way to come and see me didn't they Mum'.  He is a sweet and clever boy - yes they did travel to see us on a grotty horrible day.... thanks guys - it meant a lot to us both.

Photos of Sam 'snap chatting' and tonight fast asleep amidst his technology.



Tomorrow the plan is to get Sam out of bed and sitting in a chair to help with his posture and to give his lungs a work out. He was xrayed in his room this afternoon and the right lung is starting to look a bit 'goopy'.  This isn't surprising considering he has had anaesthetics, pain relief and being sedentary.  We are in a very small room, so have requested a larger room (several are empty on the ward) as it is looking like our admission will be a number of further weeks, plus we just don't have room to put a chair in our current room.  Tomorrow I think we shall also have a room change.

Sam has truly had a rough few days, but he has been so remarkable in how he copes with it all.  I admire him so much.  I hope and pray that the fluids in his chest dry up  and he can breath easy again.  I wish he didn't have to struggle so much.  I hope and pray he has a pain free sleep and wakes stronger again tomorrow. 

Ok, it's late, I'm tired, Sam is asleep - 3 ingredients that make sleep possible!



Thursday, July 14, 2016

48 hours post op

The last 48 hours have been non-stop being with Sam, trying to keep him settled and comfortable.  The amount of people through his room is in the dozens..... so let's recap.

On Tuesday Sam went into pre-op around 12.  At 4:10 the surgeon called to say he felt it had gone really well and that they had downsized his bladder.  It used to hold around 180 mls, now it holds around 100.  I didn't get the call from post-op until after 5, as they decided to also take some chest xrays while he was anaethetised.

The first 12 hours post-op was a delicate juggle between pain relief (given via epidural), blood pressure (which was nervously low), oxygen requirements (was on 3 litres of  02) and fluids/nutrition..... and it as a nervous and delicate time as one was altered slightly and the rest would respond or not... so something else was altered and Sam's vital signs would zig-zag precariously in and out of normal and concerning ranges.....

I was so impressed by the team work - surgical, pain team, nurses, respiratory and gastro teams all working so closely as each field of expertise was required to keep Sam ticking along.

Sam came out of surgery with 5 drains out of him and 3 lines going in to him - he had more plastic on him that the average Tupperware Party.. but as of today we have removed the one drain that was really causing him discomfort.  Since this came out he has been more settled.

Yesterday Sam was grumpy and rude to anyone that came in the room.  Today he turned listless, quiet and dozing a lot - I preferred the cantankerous Sam!  He spiked a 38.4 temp, his breathing and oxygen requirements deteriorated, the chest physio was concerned with what they heard in his lungs so the consultants were called in to review him.  It was decided to unclamp his chest drain to see if that helped - within 5 mins he had improved, so it was decided to keep the chest drain on free drainage to give him a break.

So tonight he is settled and sleeping.  He still has a long way to go, but he continues to make us all smile.  Yesterday Sam was telling the surgeon off for making his 'mitrofonoff hurt' and the surgeon struck a deal with Sam - if Sam smiled when he came in today he would take a drain out.  So all yesterday although Sam was grimacing and sad and frowning we would ask him to practice his smile for the surgeon. His little lips would sort of curve/leer at us with his eyes still frowning - it was so adorable watching him trying to smile as he was so desperate to get the drains out, although clearly not feeling like smiling.  You can tell you have been in here too long when you recognised the gait and tapping of shoes of each consultant as they walk towards your room..... well both Sam and I recognised his surgeon was approaching before he was seen.... As soon as he entered the room Sam broke out his 'smile/grimace' and kept the goofy look on his face until the surgeon met his part of the deal and took out a drain - It was the funniest face, this totally fake grin that definitely didn't have his eyes smiling. 

The photos attached are pre- surgery - having a chlorhexidine bath and hair wash (clearly not impressed) and then his place of abode for the last 48 hours. 



Sam and I were talking as he played with his cars and  I asked him what else has wheels.  Without hesitating he said, 'Beds have wheels'.  It was an insight into his world as he is wheeled about the ward, up and down lifts and in to operating theatres.  Sadly in his world beds have wheels.

The plan is he will still have the epidural in the next day or so, while the two other catheters are in.  There is still uncertainty about the chest drain and a plan to deal with the chylorthorax issue.

I am missing 'my Sam', as he is a sad little boy at the moment... still gorgeous and so very brave.  He is just amazing what he puts up with and we are so hopeful this surgery will heal well and improve his life by reducing UTI's...... but for now we will sleep, for that is a blessed thing!!

Tuesday, July 5, 2016

Back by Popular Demand!

I do believe children are a gift from God.... but this little man has shown me that each life is just not for a family, but we each have the potential to impact everyone we ever meet, smile at, shout at, glare at or be kind to. We each can change the day of each person we meet for better or worse..... and this past month of multiple hospital appointments and hospital stays has shown me this again. 

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!




Another day last week I left Sam for a few hours so I could head home and be with the girls. I took a call from the ward shortly after I left to say the nurse had given Sams milk into the wrong tube.  The feelings of anger, frustration and disappointment were very tangible and I insisted the nurse write it up as a 'Risk Pro'.  This means it is documented and goes to management and is treated seriously.  I have had too many phone calls like this over Sams life and I am tired of them.  Tired of knowing that if I am not there to watch over Sam he is not truly safe as there are some staff that do not follow systems.  Having met with management on numerous occasions I am happy that the systems and checks in place are good, it's just that when people opt to not follow them that the problems occur.  So this has been another draining and disappointing part of the admission, as it takes hours to write up timelines to report on issues of care and to meet with management so that people are held accountable so that care improves for every child on the ward.  I feel passionately that these kids have enough to fight just to get through every day life with their conditions, that they should be safe and confident in their hospital room and care, that they don't have to fight through unnecessary harms brought about by incompetence and poor management. 

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.

X

Back by Popular Demand!

I do believe children are a gift from God.... but this little man has shown me that each life is just not for a family, but we each have the potential to impact everyone we ever meet, smile at, shout at, glare at or be kind to. We each can change the day of each person we meet for better or worse..... and this past month of multiple hospital appointments and hospital stays has shown me this again.  As Sam runs around the ward chatting to people, smiling to other kids who have tubes hanging out of their body, people forget their cares and 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!




Another day last week I left Sam for a few hours so I could head home and be with the girls. I took a call from the ward shortly after I left to say the nurse had given Sams milk into the wrong tube.  The feelings of anger, frustration and disappointment were very tangible and I insisted the nurse write it up as a 'Risk Pro'.  This means it is documented and goes to management and is treated seriously.  I have had too many phone calls like this over Sams life and I am tired of them.  Tired of knowing that if I am not there to watch over Sam he is not truly safe as there are some staff that do not follow systems.  Having met with management on numerous occasions I am happy that the systems and checks in place are good, it's just that when people opt to not follow them that the problems occur.  So this has been another draining and disappointing part of the admission, as it takes hours to write up timelines to report on issues of care and to meet with management so that people are held accountable so that care improves for every child on the ward.  I feel passionately that these kids have enough to fight just to get through every day life with their conditions, that they should be safe and confident in their hospital room and care, that they don't have to fight through unnecessary harms brought about by incompetence and poor management. 

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!





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.

X