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 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.