I keep forgetting to update regarding Dylan's blood counts last week. There were no major issues to report so it completely slipped my mind to be truthful.
The community nurses rechecked his counts on the Wednesday and his neutrophils had come down to 1.7 which was fine. They have been done again today and they are 2.5 which is ok also. He did end up with a cold virus last week which he still has the remains of now.
Thankfully we do not seem to have suffered any adverse reactions from all the chicken pox exposure (touch wood) and there were no new cases before they broke up on Thursday which hopefully means we've broken the cycle and Dylan can come off his antibiotics this weekend in time to go back to nursery.
We've got some very exciting plans coming up soon so all the germs need to stay away from us!!
Monday, 29 May 2017
Monday, 22 May 2017
High Neutrophils
Dylan's blood counts this week are a bit abnormal and I had to double check them with the hospital however they are correct. His white cell count is up at almost 7 and his neutrophils are just over 5 which is high for him, especially the week after Chemotherapy when he would usually sit between 0.5-1.5 at most.
This is a cause for concern with myself, but not with the nurses *yet as Neutrophilia (abnormally high neutrophils) is usually classed as 8 and above. However because it is higher than usual it indicates the start of an infection.
Dylan did wake up complaining of a snotty nose this morning but aside from it running a bit today and some sneezes he has no other symptoms of infection.. yet.
Typical infections to cause high neutrophils are things such as..
Staph Infections.. which Dylan previously had around this time last year actually and it caused a fever and needed a weeks worth of IV antibiotics in hospital. So I am hopeful it is not that truthfully as Mike is working 6 days this week so it would be a logistical nightmare to have a hospital admission. But needs must of course as his health is priority.
Bacterial Infections such as E-Coli or another sickness bug which is a possibility as Dylan went to a party at a soft play over the weekend where I know there has been cases previously over the years. A soft play area is a tricky place to clean properly if there has been an accident or a sick child. Dylan did have a sickness bug over Christmas and I do recall the first day we took him in his neutrophils were at 3+ then so it wouldn't surprise me at all if he was sick tonight. As long as it doesn't come with a fever and doesn't persist longer than 24hrs it would be treatable at home.
It could also signify bacteria in his line so of course I am watching him for fevers more so than usual especially as his line was accessed today.
And of course viruses such as... CHICKEN POX the one ruddy virus I know he was exposed to AGAIN exactly 2 weeks ago so today would be prime timing for symptoms to be showing. Yes he is on antiviral medication but it is not fool proof and you can still develop the virus even on Acyclovir sadly. This would also mean IV antibiotics so I am on spot watch tonight as well as fever watch! Maybe I should just sleep on the floor in his bedroom!!
Typical, just as I've started to relax a bit more because we had some good news last week. Just as I'm starting to prepare for some more exciting news this week. This is not a spanner I wanted in the works right now but then I'd rather get whatever it is out of the way now than when we have plans next month I suppose..
Dylan seems fine in himself at the moment.. he is in bed (playing not sleeping little monkey) and his SATS are all ok, his heart rate isn't even elevated which it previously has done with infections. I am praying it is literally just a cold virus and we just happen to have caught his bloods the day his levels are at the highest. The hospital didn't seem concerned but they've requested the community team repeat his blood count either tomorrow or Wednesday so I should find out about that when the call to schedule it in the morning. For now I guess I just have to sit tight and wait for whatever it is to show itself and pray it is nothing serious.. <3
This is a cause for concern with myself, but not with the nurses *yet as Neutrophilia (abnormally high neutrophils) is usually classed as 8 and above. However because it is higher than usual it indicates the start of an infection.
Dylan did wake up complaining of a snotty nose this morning but aside from it running a bit today and some sneezes he has no other symptoms of infection.. yet.
Typical infections to cause high neutrophils are things such as..
Staph Infections.. which Dylan previously had around this time last year actually and it caused a fever and needed a weeks worth of IV antibiotics in hospital. So I am hopeful it is not that truthfully as Mike is working 6 days this week so it would be a logistical nightmare to have a hospital admission. But needs must of course as his health is priority.
Bacterial Infections such as E-Coli or another sickness bug which is a possibility as Dylan went to a party at a soft play over the weekend where I know there has been cases previously over the years. A soft play area is a tricky place to clean properly if there has been an accident or a sick child. Dylan did have a sickness bug over Christmas and I do recall the first day we took him in his neutrophils were at 3+ then so it wouldn't surprise me at all if he was sick tonight. As long as it doesn't come with a fever and doesn't persist longer than 24hrs it would be treatable at home.
It could also signify bacteria in his line so of course I am watching him for fevers more so than usual especially as his line was accessed today.
And of course viruses such as... CHICKEN POX the one ruddy virus I know he was exposed to AGAIN exactly 2 weeks ago so today would be prime timing for symptoms to be showing. Yes he is on antiviral medication but it is not fool proof and you can still develop the virus even on Acyclovir sadly. This would also mean IV antibiotics so I am on spot watch tonight as well as fever watch! Maybe I should just sleep on the floor in his bedroom!!
Typical, just as I've started to relax a bit more because we had some good news last week. Just as I'm starting to prepare for some more exciting news this week. This is not a spanner I wanted in the works right now but then I'd rather get whatever it is out of the way now than when we have plans next month I suppose..
Dylan seems fine in himself at the moment.. he is in bed (playing not sleeping little monkey) and his SATS are all ok, his heart rate isn't even elevated which it previously has done with infections. I am praying it is literally just a cold virus and we just happen to have caught his bloods the day his levels are at the highest. The hospital didn't seem concerned but they've requested the community team repeat his blood count either tomorrow or Wednesday so I should find out about that when the call to schedule it in the morning. For now I guess I just have to sit tight and wait for whatever it is to show itself and pray it is nothing serious.. <3
Friday, 19 May 2017
Feeling Frustrated
Dylan is starting to get fed up now and the feeling is mutual.. but the end is finally in sight, we hope anyway!
We had a clinic appointment with Prof. Grundy on Wednesday and have our 'End Of Treatment' clinic appointment date and the date Dylan will have his last Chemotherapy dose and ring the end of treatment bell has been pencilled in the diary. This is pending successful scans before then of course and we don't have a date for his next CT scan yet, they usually only schedule them a week or two in advance.
I can't pretend we aren't counting down the days now. Dylan's panic attacks are getting worse. He is getting more melodramatic over minor issues such as falling over or being told to do something he doesn't want to do. He is getting worked up and scared over his Chemotherapy when it has never bothered him before.. This week he has actually made himself sick at one point he got so frightened and worked up. He hates having his sats checked and won't sit still then starts crying / whinging.
His night terrors do seem to have stopped though (for now) and I can't help but wonder if this is because he is now trying to process these feelings more vocally in the daytime.
He talks a lot about his 'wigglys' (Hickman Line) now and the fact his friends don't have one. He often asks when it will be gone and when he can go swimming properly. I think he is starting to realise he is different now he is getting older and I think it is difficult to process at his age. He is old enough to understand certain things but not others which make it a tricky path to navigate.
We are waiting on a referral for somebody to come and help him process these feelings and emotions but I don't know how long it is going to take as it has been a while already. We are trying our best but sometimes we feel lost and unable to help him. It's a bit of a catch 22 because some of it is behavioural which needs stopping of course but some of it is symptomatic of PTSD, which I already suffer from, so I know needs dealing with calmly and with understanding. It's tricky to know which is which. What is just a typical four year olds tantrum and what is a reaction because of PTSD.
Hopefully we will get some help soon to navigate this mine field and help him process his emotions. I hate going to bed each evening feeling like I've failed him and not helped him properly. It is emotionally draining watching your child struggle mentally and physically.
We had a clinic appointment with Prof. Grundy on Wednesday and have our 'End Of Treatment' clinic appointment date and the date Dylan will have his last Chemotherapy dose and ring the end of treatment bell has been pencilled in the diary. This is pending successful scans before then of course and we don't have a date for his next CT scan yet, they usually only schedule them a week or two in advance.
I can't pretend we aren't counting down the days now. Dylan's panic attacks are getting worse. He is getting more melodramatic over minor issues such as falling over or being told to do something he doesn't want to do. He is getting worked up and scared over his Chemotherapy when it has never bothered him before.. This week he has actually made himself sick at one point he got so frightened and worked up. He hates having his sats checked and won't sit still then starts crying / whinging.
His night terrors do seem to have stopped though (for now) and I can't help but wonder if this is because he is now trying to process these feelings more vocally in the daytime.
He talks a lot about his 'wigglys' (Hickman Line) now and the fact his friends don't have one. He often asks when it will be gone and when he can go swimming properly. I think he is starting to realise he is different now he is getting older and I think it is difficult to process at his age. He is old enough to understand certain things but not others which make it a tricky path to navigate.
We are waiting on a referral for somebody to come and help him process these feelings and emotions but I don't know how long it is going to take as it has been a while already. We are trying our best but sometimes we feel lost and unable to help him. It's a bit of a catch 22 because some of it is behavioural which needs stopping of course but some of it is symptomatic of PTSD, which I already suffer from, so I know needs dealing with calmly and with understanding. It's tricky to know which is which. What is just a typical four year olds tantrum and what is a reaction because of PTSD.
Hopefully we will get some help soon to navigate this mine field and help him process his emotions. I hate going to bed each evening feeling like I've failed him and not helped him properly. It is emotionally draining watching your child struggle mentally and physically.
Thursday, 4 May 2017
The Waiting List
There is a boy (well technically he is a man now) that we know in the US whom 11 years ago had a lung (and liver) transplant because of Langerhans Cell Histiocytosis. The LCH was in his lungs, amongst other places, and had caused cysts like Dylan's. His mum has once told me herself that his lungs were 'nowhere near as bad' as Dylan's were. So why, you may be wondering did he have a transplant?..
Because the doctors did not know what was wrong with him. They had no idea what he was suffering from was LCH, and like with Dylan last January, they thought lung transplant was the only option. As I mentioned previously he also had a liver transplant for the same reasons.
Great problem solved!! Erm well actually no.. because the rogue Langerhans cells were never treated so it returned in the new lungs. This time around they diagnosed him and treated the problem with Chemotherapy. Fabulous, happy days right?!
There is a common misconception that transplant solves all issues. It is a misconception that I once had myself.
When I was originally told Dylan would need a double lung transplant I naively thought that would fix the problem, that he would have a new healthy set of lungs. Taking away for a second the chance of recurring disease.. I knew about the anti rejection drugs that transplant patients need to take but I also knew of people living full happy lives after liver and kidney transplants. I thought as long as the disease couldn't come back we'd be fine. Then I got hit with the bombshell that double lung transplants don't come with a long life expectancy.. the average is 5-10 years before patients suffer Chronic Rejection of the organ.
That's right. 5-10 years. Some people don't last a year, others make it 20+ but the average is between 5-10 years. Ok so then you just have another transplant right? That's what we commonly get asked when we talk about transplant. The answer is usually a resounding no..
The wait time for a double lung transplant isn't as long for a child as an adult as they do tend to get priority now adult lungs can be made smaller and used. Also there aren't many children waiting for double lung transplants compared to adults. But the problem lies with how do you keep a patient alive, adult or child, when their lungs are failing?!
I am by no means a medical expert but I do have some knowledge so I can outline the basics..
When organs fail, certain things can keep people alive whilst they wait for a donor such as Dialysis for example. Even heart transplant patients can be kept alive whilst they are on the waiting list. Just recently there were articles shared about a young boy in London being on an artificial Berlin Heart for 3 years whilst waiting.
This isn't always an option for the lungs. If you can survive with a ventilator breathing for you without deteriorating then great.. you can have a Tracheotomy and wait it out that way. But if your lungs are failing even a ventilator won't help. When Chronic Rejection occurs in the lungs they become stiff and difficult to move up and down even for the ventilator and a person will deteriorate.
There is a machine called ECMO which effectively oxygenates your blood and organs without the need of the lungs, but it is only a temporary option. The average time ECMO is recommended for is 5 days but it can be used for up to 25-30 days. Any longer and the body starts to suffer adverse effects such as brain damage. Yes you read that right.. DAYS.
The average lung transplant waiting time is currently 3-6 months but it can be up to 3 years plus if you have a rare blood or tissue type.
This is why lung transplant is a last resort and why you'll often hear us say we don't want Dylan to ever need to have one. Yes his lungs will always be damaged but if he can survive and live a fairly normal life with what he has (yes he may never be an athlete) it is a better option than putting a timer on his life expectancy..
THIS is why we support Organ Donation as we believe this waiting list should be shorter giving people more chance of survival and secondary transplant. Certain countries actually have an 'opt out' system now rather than 'opt in' so patients are automatically candidates for transplant unless they state otherwise. Whilst I do not think this is the answer, I do think more people should be willing to give if they'd be willing to receive. Same goes for Blood Donation and we are advocates for that also.
This is also why we raise awareness of LCH and particularly Pulmonary Langerhans Cell Histiocytosis.. so doctors know what to look for and recognise the symptoms and characteristics of the disease maybe avoiding transplants in some cases and providing quicker access treatment. Especially PLCH because it can become life threatening very quickly. We literally need our lungs to survive.. so be thankful for every breath you take today!🎗💙
Because the doctors did not know what was wrong with him. They had no idea what he was suffering from was LCH, and like with Dylan last January, they thought lung transplant was the only option. As I mentioned previously he also had a liver transplant for the same reasons.
Great problem solved!! Erm well actually no.. because the rogue Langerhans cells were never treated so it returned in the new lungs. This time around they diagnosed him and treated the problem with Chemotherapy. Fabulous, happy days right?!
There is a common misconception that transplant solves all issues. It is a misconception that I once had myself.
When I was originally told Dylan would need a double lung transplant I naively thought that would fix the problem, that he would have a new healthy set of lungs. Taking away for a second the chance of recurring disease.. I knew about the anti rejection drugs that transplant patients need to take but I also knew of people living full happy lives after liver and kidney transplants. I thought as long as the disease couldn't come back we'd be fine. Then I got hit with the bombshell that double lung transplants don't come with a long life expectancy.. the average is 5-10 years before patients suffer Chronic Rejection of the organ.
That's right. 5-10 years. Some people don't last a year, others make it 20+ but the average is between 5-10 years. Ok so then you just have another transplant right? That's what we commonly get asked when we talk about transplant. The answer is usually a resounding no..
The wait time for a double lung transplant isn't as long for a child as an adult as they do tend to get priority now adult lungs can be made smaller and used. Also there aren't many children waiting for double lung transplants compared to adults. But the problem lies with how do you keep a patient alive, adult or child, when their lungs are failing?!
I am by no means a medical expert but I do have some knowledge so I can outline the basics..
When organs fail, certain things can keep people alive whilst they wait for a donor such as Dialysis for example. Even heart transplant patients can be kept alive whilst they are on the waiting list. Just recently there were articles shared about a young boy in London being on an artificial Berlin Heart for 3 years whilst waiting.
This isn't always an option for the lungs. If you can survive with a ventilator breathing for you without deteriorating then great.. you can have a Tracheotomy and wait it out that way. But if your lungs are failing even a ventilator won't help. When Chronic Rejection occurs in the lungs they become stiff and difficult to move up and down even for the ventilator and a person will deteriorate.
There is a machine called ECMO which effectively oxygenates your blood and organs without the need of the lungs, but it is only a temporary option. The average time ECMO is recommended for is 5 days but it can be used for up to 25-30 days. Any longer and the body starts to suffer adverse effects such as brain damage. Yes you read that right.. DAYS.
The average lung transplant waiting time is currently 3-6 months but it can be up to 3 years plus if you have a rare blood or tissue type.
This is why lung transplant is a last resort and why you'll often hear us say we don't want Dylan to ever need to have one. Yes his lungs will always be damaged but if he can survive and live a fairly normal life with what he has (yes he may never be an athlete) it is a better option than putting a timer on his life expectancy..
THIS is why we support Organ Donation as we believe this waiting list should be shorter giving people more chance of survival and secondary transplant. Certain countries actually have an 'opt out' system now rather than 'opt in' so patients are automatically candidates for transplant unless they state otherwise. Whilst I do not think this is the answer, I do think more people should be willing to give if they'd be willing to receive. Same goes for Blood Donation and we are advocates for that also.
This is also why we raise awareness of LCH and particularly Pulmonary Langerhans Cell Histiocytosis.. so doctors know what to look for and recognise the symptoms and characteristics of the disease maybe avoiding transplants in some cases and providing quicker access treatment. Especially PLCH because it can become life threatening very quickly. We literally need our lungs to survive.. so be thankful for every breath you take today!🎗💙
Thursday, 20 April 2017
Outliving Your Children
This past two weeks I've been reflecting a lot more on last year and have found myself questioning the future. Easter is a time for resurrection and new life but for so many that is not the reality and they are instead facing the end of their lives or their children's..
No parent should outlive their children but for so many it is a reality. It's a reality, that I think, it is easy to be oblivious to if you've never faced it. I've faced miscarriages before but even that didn't prepare me for the world as I know it now. These things are the things that often people think 'it won't happen to me' because it isn't talked about. The taboo of baby loss is slowly being broken thanks to charities such as Tommy's and Count The Kicks etc and I think that this should be the same for all child loss for whatever reasons.
I follow lots of families in similar situations to us, some with children with Cancer(s), some with chronic illnesses, some with babies that haven't survived after birth and some with disabled life limited children that are currently 'making memories' whilst their precious children are receiving end of life care. It breaks my heart and even though Dylan is doing well now in comparison to last year, I find myself worrying about his life expectancy with the damage all this has caused to his body.
This is why we try to focus on making memories with our boys and enjoying as much time together as possible. We purchased Merlin annual passes in the sale this January to enable us to take the boys to the theme parks that they love as much as they wish without the worry of money (besides petrol of course).. It is a small way to make up for the fact we cannot take them on holiday abroad properly due to Dylan not being allowed on a plane. Mike had the first week of the Easter holidays off and we made the most of that and tried to fit in lots of activities which not only help make memories but also keep our minds busy and too full of love to dwell on the negatives. Sadly these thoughts don't stay away too long though.
Dylan's birthday is next week and I remember being too scared to even buy his gifts last year in case he didn't make it. It makes me wonder how many birthday's lie ahead of him. Will he make it into adulthood? Will his lungs be good enough to support his growing body? Will it come back again? Am I going to outlive my child? The answer to that last one is probably.
There are no real answers or statistics for Dylan as he is so rare. I only know of one case like him that are now into adulthood and doing well but that is ONE case! All it'd take would be him to decide to smoke as an adult and it would likely come straight back.. that is why people aren't allowed to smoke around Dylan because even though it didn't cause his cells to act the way they did, it could reactivate the disease.
You cannot live in the past or the future only the present. The past is painful, the future is frightening but the present is perfect right now. Every day I pray for another perfect day. And I pray other families I know get another day of making memories..
Tuesday, 11 April 2017
Charlie
I have been asked a few times for my opinion on the court case and situation of baby Charlie and I have refused to express any form of opinion. We were even invited to the BBC to do an interview for today on the matter, as parents who have been in the situation. We already had plans to take the boys out but to be honest I would not have wanted to be interviewed on the subject anyway.
The reasons for this are varying but some of which are of a personal nature from myself. Having previously had my words twisted and feeling personally attacked by comments I did not want to be back in the 'limelight' nor open myself up to more abuse. I have had some horrible things said to me over the last 6 months, some of which have caused deep emotional scars and left me a different person unable to socialise properly with others but I digress a little.
I also feel my opinion would always be seen as coming from the mother who 'wanted to turn off' her son's life support therefore it will paint me as biased and potentially unsympathetic to the parents' cause which is NOT the case at all. It is an impossible no win situation and I think the parents have been so strong in their fight, and I hope their strength helps them through what lies ahead of them next.
Our situations whilst similar were also different and unless you know all the facts it is impossible to side with the parents or the doctors and give a fully informed opinion. The truth of OUR situation was that Dylan was suffering and deteriorating rapidly. Putting aside his 'miracle' recovery for a moment and just looking at the facts of the 48hrs prior to switching off the Rocuronium (paralysing drug)...
We had 'potential' treatment options to buy him more time such as Ecmo or transplant but Dylan's oxygen levels were critical even on the highest oxygen level and vent settings and every time we even tried to move him for an X-ray he deteriorated more so there was no feasible way he would have survived a journey to another hospital let alone either procedure. We had no other options it was that simple. We could either turn his life support off and pain relief up to let him slip away peacefully and pain free in our arms or we could sit back and watch him deteriorate, clearly suffering, and then go in to cardiac arrest suddenly as he was at risk of doing 'any moment' overnight at one point. Now tell me, if those were your only two options.. which would you rather?!!
Yes that never happened and by some sheer miracle turning off the Rocuronium was enough for us to see he needed more sedation* and once comfortable his heart rate stabilised and he gained enough strength to start to fight back** gradually but that isn't what usually happens. I do not want our story to be the thing that provides parents in this situation false hope, especially now the ability of Intensive Care doctors may now be questioned more in these sort of situations.
*2-3yr olds are notoriously hard to sedate AND he also has potential EDS which burns off sedation even faster.. normally what he was on would be enough to sedate a young adult.
**this and blood tests confirming his organs were still functioning caused us and the consultant to STOP the process of removing life support. He remained on ventilation without the Rocuronium drug until he was stable enough to breathe by himself again 9 days later.
The ONLY comment I will make, for any parent facing such a heartbreaking decision, is this and it is partially a quote from an intensive care consultant.. There comes a time when you are doing things TO the child and not FOR the child. And that is what must be considered in these situations. Parenting means putting your child's needs first and yourself second. </3
The reasons for this are varying but some of which are of a personal nature from myself. Having previously had my words twisted and feeling personally attacked by comments I did not want to be back in the 'limelight' nor open myself up to more abuse. I have had some horrible things said to me over the last 6 months, some of which have caused deep emotional scars and left me a different person unable to socialise properly with others but I digress a little.
I also feel my opinion would always be seen as coming from the mother who 'wanted to turn off' her son's life support therefore it will paint me as biased and potentially unsympathetic to the parents' cause which is NOT the case at all. It is an impossible no win situation and I think the parents have been so strong in their fight, and I hope their strength helps them through what lies ahead of them next.
Our situations whilst similar were also different and unless you know all the facts it is impossible to side with the parents or the doctors and give a fully informed opinion. The truth of OUR situation was that Dylan was suffering and deteriorating rapidly. Putting aside his 'miracle' recovery for a moment and just looking at the facts of the 48hrs prior to switching off the Rocuronium (paralysing drug)...
We had 'potential' treatment options to buy him more time such as Ecmo or transplant but Dylan's oxygen levels were critical even on the highest oxygen level and vent settings and every time we even tried to move him for an X-ray he deteriorated more so there was no feasible way he would have survived a journey to another hospital let alone either procedure. We had no other options it was that simple. We could either turn his life support off and pain relief up to let him slip away peacefully and pain free in our arms or we could sit back and watch him deteriorate, clearly suffering, and then go in to cardiac arrest suddenly as he was at risk of doing 'any moment' overnight at one point. Now tell me, if those were your only two options.. which would you rather?!!
Yes that never happened and by some sheer miracle turning off the Rocuronium was enough for us to see he needed more sedation* and once comfortable his heart rate stabilised and he gained enough strength to start to fight back** gradually but that isn't what usually happens. I do not want our story to be the thing that provides parents in this situation false hope, especially now the ability of Intensive Care doctors may now be questioned more in these sort of situations.
*2-3yr olds are notoriously hard to sedate AND he also has potential EDS which burns off sedation even faster.. normally what he was on would be enough to sedate a young adult.
**this and blood tests confirming his organs were still functioning caused us and the consultant to STOP the process of removing life support. He remained on ventilation without the Rocuronium drug until he was stable enough to breathe by himself again 9 days later.
The ONLY comment I will make, for any parent facing such a heartbreaking decision, is this and it is partially a quote from an intensive care consultant.. There comes a time when you are doing things TO the child and not FOR the child. And that is what must be considered in these situations. Parenting means putting your child's needs first and yourself second. </3
Friday, 7 April 2017
Germs Germs Germs!!
When you know your immunocompromised child has been in contact with somebody that is unwell you literally feel like you are waiting for the inevitable. We do our utmost to protect and prepare for these situations but sometimes things are out of our control. Not all illnesses show visible symptoms until it's too late and the germs are already spread around. Other times sick children are dosed up on medicine and sent out to mingle with others because it's only something 'minor' and they seem fine.
Sadly what is 'minor' to one could be major to another and I think people genuinely do not realise this, because unless you've been in these 'Cancer Parent' shoes you wouldn't to be honest. This is why schools with sick children do try to police these things more so than their attendance records and they will try to make other parents aware but it isn't always followed. I'm lucky our school is pretty amazing with this but there are always risks and those who don't seem unwell to the outside world.
We have been lucky that the general cold viruses of winter have come and gone with no real effects. The one that hit us hard over Christmas was a D&V bug which was caught from somewhere outside of school. Sadly this what I'm anticipating we may have caught unknowingly now. Dylan doesn't handle being sick very well, he panics that he can't breathe and then ends up hyperventilating (which is not good for his lungs) and almost passing out.
Of course there has been numerous Chicken Pox incidents and we are now at the peak of that season.. as predicted Dylan starts his third course of preventative antibiotics this weekend because of contact with Chicken Pox again, but that is impossible to avoid because you are contagious for 48hrs prior to any symptoms or spots. This is why it is such a common childhood illness but it can have devastating consequences for people with low immune systems.
Truthfully anything contagious that causes a fever is a danger to Dylan.. sadly this is one of the most common things children are sent out into the world with after a dose of calpol. Oncology patients aren't allowed to be given calpol, even if they develop a fever. A fever is one of the first warning signs of serious infection and in patients with a Hickman Line or Port it could signal a line infection which can be VERY dangerous as of course it is a direct line to the bloodstream. Calpol reduces fever and therefore can cover up serious underlying issues. This is in fact one of the things that happened last March as Dylan was having paracetamol for pain relief so his fever was masked by this and we weren't aware he had an infection until it was serious.
Dylan also has previously had what is called a Febrile Seizure because of a fever. These are more common in under threes (some people state under fives) but if you have had one before it can indicate a person is more prone to them. It is the body / brains reaction to a rapidly rising temperature. Dylan's febrile seizure(s) caused him to stop breathing and need CPR and ventilation so I would rather not have that happen again as I do not want to be back where we were last Easter. I wouldn't wish that on anybody.
Keep us in your thoughts and prayers that we survive the night / weekend with no adverse effects of these germs he has been in contact with. We were supposed to be attending a birthday party tomorrow but IF we make it through the night with no illness I will likely not be sending him as it is mostly nursery children so I'd rather not risk more potential D&V exposure should we be lucky enough to avoid it. If he is well enough it would be wonderful to get outdoors and enjoy the sunshine! <3
*Apologies for the double posting tonight, I'm making up for lost time now I have a (half) working app!!
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