Our Pal - Samuel M

Please do not send any Dairy products to Sam

Story written 2016

In the summer of 2009 Sam was born 14 weeks premature, making him a micro preemie.

He spent 15 weeks in the Neonatal Intensive Care Unit before going home on oxygen. However, this unfortunately wasn’t the end of our hospital life but, in truth, turned out to be the beginning of our new life.

Sam spent 2/3 years of his early life in and out of hospital, only managing a few days with us as a family before being re-admitted again. After many years of illnesses, operations and having had the ‘talk’ with consultants, it was discovered that Sam had a immune disorder. His immune system didn’t remember an illness so it was like having a newborn baby all the time. Sam’s body also didn’t know it was poorly and so didn’t fight off any bacteria or viruses.  Therefore, he remained on constant IV antibiotics for years, which we learnt to do at home.

In 2012, Sam had 60% of his right lung removed due to scarring caused by constant infections, and in the latter end of 2012 Sam had a sibling bone marrow transplant from his older brother.

Sam remains a very poorly boy, on constant oxygen, IViG (which is an artificial immune system), a ventilator at night time and many, many meds. However, Sam is a very happy, cheeky young man with an adult sense of humour. Sam will lighten up any situation and just has the biggest heart I can know in a child. His daily life is filled with physio and medical intervention, yet he never complains or asks ‘why me?’.

We do not know what the future holds for Sam, but we know that Sam will give it his all regardless of how he feels inside.

Update 29th May 2021

Little update on Sam. After much anticipation and us having to fight very hard for Sams needs he’s having a weeks worth of in-depth tests next week to confirm the need for his stoma bag. These tests aren’t pleasant but a must for us to move forward. Sams really looking forward to the day he doesn’t have any accidents yet of course is very nervous about next week. 5 day admission to GOSH is ahead of us.

Update 21st April 2021

Sam has had a weird few months what with COVID keeping us indoors. However we do have a busy time coming up over the next few months. Sam is starting tests to have a stoma bag fitted. This will hopefully improve his quality of life and give him more freedom and independence as he gets nearer to adulthood.

Sam is excited about  getting a stoma as at 12 he’s clearly embarrassed by having a non functioning bowel. Lungwise Sam is doing great and COVID has given him a chance to not only rest his lungs but allow them to grow without  picking up a virus and ruining the lining of the  new growth. This has been a blessing in disguise for him. We hope for it to continue as we all come out of lockdown.

Thank you to all those that have sent the boys mail, they have brightened up some dull mornings in the last year and given them a sense of normality. It’s unbelievable how much the post has become the highlight of the day.

Update 10th November 2019

Sam’s had a rough patch of it recently which all started with D&V about 8 weeks ago. Because of this he’s lost weight which in a skinny child isn’t great news. He’s had many tests to see what’s going on but so far no real answers. The best the team can come up with is left over from the D&V but can’t be sure. 

About four months ago we found out by pure chance that Sams blood sugar levels are a little out the norm. He goes both high and low but not enough to be treated, just enough to cause symptoms. We recently had the 24hr starvation test done and to say it was hard is an understatement but Sam completed it 🙂

Sam has also been in a lot of pain over the last six months in his legs and hips due to the scoliosis and leg difference. Sams wedge in his shoe is being increased with the aim to place an external wedge on his shoes which will hopefully level Sams hops out a little decreasing the pain. 

This has all had a huge effect on Sam emotionally and he’s had moments of struggling mentally but we’re working on this and it helps. He’s also missed 60% of his school year so far which isn’t good for him. We are managing to keep him current by working on it at home but nothing beats the social side of school. 

Update 2nd April 2019

Sam’s health has been up and down over the last few months, mainly from a gut perspective landing us in hospital a few times. His weight has been declining and his intestinal track is either way too fast or stops all together. We are awaiting a long stay in hospital to try and sort this out. 

Chest-wise, Sam’s been really stable and managed the last winter with very little issues which is unheard of for Sam. He stills tires easily and relys heavily on medication, but we finally have the right combination of drugs. 

Sam’s immunology bloods remain just under the normal level even with treatment but it’s enough to allow him to remain safe outside. 

Our main concern is Sam has started to develop ‘fuzzy’ episodes where he can’t move or talk, but can hear what’s going in around him. These episodes are becoming more frequent but we don’t know what’s causing them. 

Emotionally Sam’s doing much better and has accepted his limitations but has started to find ways around most things. This in itself has been the best gift ever as it’s been hard watching him be sad and know we can make it all better. The post he receives really helps lift his spirits and makes him smile. He especially likes the cards that come with personal info like cats’ names etc as he can relate. 

Update 9th September 2018

Sam has had a difficult few months and has struggled with many illnesses from shingles to tummy pain. We’ve been struggling to get his stomach go fully function again and his bowels are really playing up. Alongside this Sam has been having weekly (if not more frequent) episodes of not being able to move or talk. We have spoken to his team about these and we are awaiting a neurologist input where we will hopefully be able to get to the bottom of what’s going on. Until then we have to just support Sam through these episodes as there’s not much else we can do.

Chest wise Sam has not had a great summer and at times he’s struggled to even climb the stairs. Again this was mentioned to his team and some tests were performed and we will find out what the plan moving forward will be at our next clinic appointment.

As Sam had a rough summer break his moods not been the best but he’s tried to stay as upbeat as he can. We are hoping being back at school will help with this and Sams started the local youth group which he’s really enjoying.

Update 25th February 2018

Sams struggled for a few months now with pain, pain all over from muscles to tummy spasms to headaches. The drs are trying hard to find out why, what we’ve found out at the moment is that Sams hamstrings are tight and he needs to wear his glasses full time. He’s started horseridding in the hope to help his muscles and give him better core ability.

Since Sams stomach gave up in December it’s been really hard to get it going again. We are now venting his gastro button daily as he appears to be producing a lot of air which causes some of his pain.

We have an mri coming up to see if we can dig any deeper for clues as to what’s going on. For now we carry on with the pain relief and horse ridding lesson.

Update 23rd November 2017

Sam’s had a very difficult few months and in truth no one is sure what’s going on. He keeps having episodes of losing all colour, getting bad headaches and generally feeling unwell. These last anything from 30mins to 2hrs. His other issue is his leg is still giving way so he’s falling over frequently. Again no one is sure as to why as structural damage has been ruled out, along with cardiac. We are now awaiting a neuro input to see if this is the cause.

Sam’s also been suffering from a sore throat that he describes as his throat closing in on him. Again we are but guessing what’s wrong, though we do know that Sam has had  pseudonymous in his sputum samples so he was treated with IVs. Since stopping the antibiotics, Sam has noticed an increase in symptoms, along with an increase in mucous plugs which are becoming an issue again. We are hoping to go to theatre shortly for his team to have a look down and see what’s going on.

Since his birthday Sam has been struggling, mentally with his conditions. We have to remember he’s a 9yr old stuck in a 90yr olds body. He wants to be able to run around and play with his friends. In his words ‘I just want to be normal’. It’s so hard to help with this as I can’t change his medical conditions or even say there is an end to it all because there isn’t. We have however arranged for Sam to talk to someone who specialises in this type of treatment and hopefully bring Sam’s mood back up again.

Update 30th August 2017

Sams has had a difficult few months and we’ve had to ask our consultant to have a look at him earlier than his six monthly review. From an immunology point of view sam is stable and actually his numbers are the best they’ve ever been. However he had to overcome his needle phobia for this and I’m glad to report that after a few months of work Sam now just lets us get on with it and doesn’t even flinch.

Its the rest of his issues that are not going great. Sam has been suffering from a lot of symptoms that are thought to be connected to his cardiac problems and whilst the Drs have tried to not treat with medication they now feel they may have no choice but to start them. So we are waiting for extra tests to be performed as the problem with cardiac meds is that once you start them its hard to stop or reduce so it needs to be the last resort. Its hard watching Sam when he’s sat on the sofa in pain and looking really drawn in the face, knowing there is very little we can do to help him.

Sams other issue is his knee, recently sam has been falling over a lot for no apparent reason so again we asked his Dr to have a look. She in turn asked physio to give sam a quick once over and its a good job she did as it turns out that sam has a potential torn ligament in his knee. He has been walking around with it for some time and this is the reason his knee has had trouble locking. We have been given exercises to do and awaiting a review from ortho as to where we can go from here as he’s already covered in bruises.

Update 1st May 2017

Sam has had a really difficult month, since we found out that Sam’s dysmotility is throughout his intestinal tract we have been trying different treatments to help in making him clean during the day. He started on a new procedure called the peristeen however this caused massive spasms and even an infection (needing IV antibiotics) as all the stools whizzed through his tract and his body wasn’t use to it as he’s normally slow. Sam managed to lose 1.2kg in a week which is a lot for someone like Sam that has nothing to lose. We then moved onto daily enemas which were going great for a week, however they then went on to irritate his bowel and started to strip the lining causing him to lose lots of mucous from his rectum. So he’s currently on a break for the weekend and we will try something new from Monday. We can but hope this works as we are slowly running out of options before we head to surgery.

Sam’s found it hard emotionally over the last month as the spasms are so painful and it was really getting him down. We went to Alton Towers but the trip was dampened by pain and generally feeling rubbish. This was such a shame as we had been planning this trip for four months.

However, he still amazes me with the acceptance of it all and how he trusts us enough to keep trying. He did find the not having any accidents a real lift and this boosted his confidence.

Sam’s lungs have behaved themselves this month and his SCIG is going great and keeping his levels steady which is amazing news. Sam is so good with it all as it can be painful and uncomfortable even after the treatments finished, for up to 24hrs. But he just takes it in his stride and has a quiet evening watching TV or playing with his ponies on his bed.

Big news this month is we got Sam a new puppy called Bella. She’s raised Sam’s mood loads and he even takes her for a walk on his wheelchair. This is great as not only has it been so beneficial for Sam but it gets Bella used to the chair without trying to escape or get run over.

In the next month we are hoping to take up swimming as a form of physio and of course as Bella can go further and further, we can go on family walks.

Update 2nd February 2017

This month has been full of hospital stays, appointments and procedures, some very unpleasant procedures.

We have, however, gained a lot of answers and insight in to Sam’s illnesses. Unfortunately the answers have just opened a whole new set of problems with yet even more unpleasant procedures to come. We found out that the dysmotility that Sam has goes right through from his oesophagus to his rectum. GOSH are currently unable to move forward with the treatment needed, however UCLH are helping adults with similar issues so our team are seeing if they can get Sam over there to be seen. All medical science moves on with volunteers so why not Sam? 🙂

Sam has found all this extremely hard and for the first time ever Sam cried on his way to the treatment room. He’s normally so open and compliant with what we ask of him that it broke my heart to see him cry and not be able to help at all. The tests had to be done for us to get answers, so all I could do was hold his hand and try to get him through.

We had our 6-monthly respiratory review and are changing a few things in the hope of stabilising Sam a little more but should in the long run mean Sam has more ‘well periods’.

One of the major changes this month has been that Sam changed from IViG to SCiG. This is a massive step for Sam medically and emotionally as up to now Sam’s had a huge needle phobia (due to the amount of cannulas he had before we got his central lines) but has had to overcome this because SCiG means two small needles have to be placed into his legs every 2 weeks. The reason for the switch is that Sam is now getting older and this will mean we can give his immunoglobulin at home. He did amazingly well and we couldn’t be prouder, not only did he accept the needles, he allowed me to place them rather than the nurse.

So all in all January has been a big step towards Sam’s independence and future treatments.

Update 7th January 2017

Sam’s been very much up and down over the winter months, causing us some worry. All aspects of his illness has been effected from gut, lungs, heart rate, immunology, the works.

Sam’s going to have a busy month of tests and procedures and the outcomes are very much unknown, but will hopefully mean we can move forward and allow Sam to regain some control. Some of these tests are unpleasant and to be honest we have put off asking the doctors for help for this reason but as Sam grows its not appropriate that we ‘ignore’ the issues anymore but have to face them head on now. Sam is, as ever, facing them with a smile and sees the positive in it all.

Sam’s lungs were giving us a lot of grief just before Christmas with a lung function of just 68%, however a round of IV antibiotics has increased his exercise tolerance, so now we are waiting to see what happens over time and if whatever caused the decline returns.

In January, Sam will be starting the transition from IViG to SCiG as the doctors feel Sam’s immunoglobulins will now be for the foreseeable future and its always better to do things at home than having to go to hospital. This will be huge for Sam as he has a massive needle phobia and the idea of stabbing himself in each leg weekly is not high on his list of things to do. We’ve had a practise run and this went well so we are optimistic, however we have told Sam this is 100% his choice.

So January will be very busy and productive for us all and will be a big step in Sam’s independence and medical future.

Update 21st October 2016

Sam’s having a settled period regarding his chest and whilst he had a temp not so long back he has remained relatively well 🙂

Unfortunately we can’t say the same for his gut. It’s so up and down at the moment and whilst we have put off gastro suggestions for certain interventions I’m not sure we can for much longer. We are trying a long, long course of oral antibiotics in the hope to get get rid of any bacterial overgrowth that may be causing the issue. This will not cure any of Sam’s gastric issues but will hopefully make things a lot better day to day.

Sam remains oblivious to it all and just gets on with things that are thrown at him. He started in yr 3 this month and struggled with full days, but actually loves it so much he has been begging us to go in for half days. So after a month of half days we are trying full days again, with the intention of staying till at least 12:00. I never thought yr 3 would affect him this much and it came as a bit of a surprise to be honest.

Thank you to everyone that sent Sam a birthday card/gift, he read each one and was so excited when the post arrived. We managed to go ‘glamping’ which he just LOVED and said it was the best birthday ever lol. Phew, as it was not easy to set up when a child is on a vent.

Update 13th August 2016

Sam saw Gastro at Great Ormond Street this month and they are confused as to why his tummy is still playing him up. We are to be admitted for day testing on his hair (strange, I know) to see how many bugs are growing in his stomach and which ones so we know what antibiotic to use long-term. Sam will also have a special glucose test done which measures different aspects of his blood sugars. It’s all very in-depth and scientific.

Sam’s chest has been amazing this month and he’s managed to even climb a waterfall when we were visiting friends in Ireland.

However Sam appears to have a new problem. About once a month for the past year Sam has developed a petechiae rash on his torso. In recent months this is now a weekly thing and he’s bruising more easily. His platelet counts are all good though, so the doctors have requested a breakdown clotting and if this is ok we will be talking to haematology.

Sam finished infants school this month which is a massive achievement and he can’t wait to go up to big school.

July’s monthly project was very much appreciated during his routine 3 weekly hospital trip for meds. Kept Sam busy and it’s now hanging from his bedroom window. Sam takes the time to read every single postcard and letter that comes through and he enjoys hearing about how different people live.

All in all Sam’s had a good month and he’s looking forward to his birthday.

Update 7th July 2016

Sam is having a stable-ish period. The permanent oxygen has benefited him no end and he’s able to enjoy day to day activities without getting out of breath.

His tummy, however, is proving a bit more of an issue. He stopped his gastric antibiotics 4 weeks ago and already we are back to where we were months ago. So it looks like long term antibiotics are what’s needed. We are seeing GOSH next week so hopefully they will come up with a better plan. It’s such a shame as he was just starting to put on weight and was looking good for it, now he’s lost all that again.

Sam’s brothers are always so pleased to receive something in the post and makes them feel special. Even Jordan who’s 15 gets excited and helps his brothers read their mail too.

Update 3rd May 2016

Sam has, once again, been having a difficult month. His stomach is still a source of concern and he on a lot less calories than he should be. Therefore, he has lost a lot of weight and now most of his bones are sticking out. So, in an attempt to get on top of this, Sam is going to have to go back into his feed pump and start a new medication in the hope this works.

This, however, brings a new problem as Sam is 24/7 dependent on oxygen, which he carries on his back. But with only one back and two backpacks we are having to come up with new ideas on how to manage this.

Sam’s lungs have been up and down and at times he’s needed a lot of extra support when sleeping.

We are hoping next month’s update will bring good news, but please do know that each and every email/card/letter is read and brings a smile. Each gift is eagerly opened with excitement and happiness. Post Pals has brought so much to Sam that the first thing he asks now is ‘has the postman been?’.

We are learning all about the countries from which the letters arrive from and how far they have had to travel.

The other boys have received a couple of gifts too and they were so pleased to have something just for them. They ripped open the envelopes and intently read the messages inside. So thank you from each one of us.

Update 3rd April 2016

Sam’s had a difficult few months and had to deal with a lot of medical ups and downs. He’s tiring easier and his gut gave up for three weeks straight and even now he’s not back to normal.

We’ve only been part of the Post Pals family for a month and I really can’t tell you the difference it has made. He’s so excited every day when the post arrives and we sit and read every single one that arrives. We have even bought a world map to stick on his bedroom wall and marking off all the different places a card/gift arrives from. It’s teaching Sam so much more than we ever thought.