Antibiotics Yet Again...
And just as I was feeling better, getting rest, enjoying abit of routine..the hospital call to say Henry has grown a virus in his lungs and has to be on antibiotics for 2 weeks.
2 weeks you may question...not such a big deal ...
But it is. It means having to physically hold down Henry while trying to get the syringe in his mouth. It means that in the morning I have to now do his breakfast, give him 3 vitamins from 3 different syringes, get him dressed, brush his teeth, help him go to the toilet a few times, get his nebuliser ready, keep him still to do his nebuliser, clean his nebuliser immediately, then fit in him screaming and being physical to me while I hold him down for antibiotics.....and then get him to nursery for 8am. And some parents struggle just getting their child dressed every morning....!
Enjoy that every morning for 2 weeks. Morning and Afternoon. And with another nebuliser in the evening and pep masks and other physio. Where is the time for him and me to actually play together and have some special time?
So when the nurse calls 15minutes before I need to get him to nursery, I burst into tears. I am so tired. Cystic Fibrosis is an invisible illness on the whole. He seems so well at the moment and everything in my gut is telling me he does not need this antibiotic. The NHS likes to give antibiotics as a precaution which I understand, of course I don't want him to get his lungs infected from this bug, of course I don't want to take yet more time off his life becuase it could cause lung damage.
But what the hell do you do when you really don't think he needs it? When it really causes so much stress and exhuaustion to myself and frustration and anger in Henry?
I am again left in limbo as there is no research for or against treating what is frankly a very dubious way of collecting samples from his lungs (cough swabs on a 2 year old is pretty inconclusive).
And the nurse talks to me in a stern and authoritarian voice when she is talking to a mother who already has alot of her plate. Add this to the pot of trying to move to different area, find a new school, find a new job, deal with the unpredictable nature of Henry's father and his own issues he brings to me!
I don't mean this to sound angry or pitiful or judgemental but it is bloody hard raising a child alone with a chronic illness.
And it used to be so much worse.
Calls to the hospitals/ doctors/ Pharmacists would be almost every other day to check meds, check cough swabs, have clinics, routine doctor's appointments etc etc while also recovering from childbirth, hormones swirling around your body and having the least supportive and awful husband battling me with my concerns and questions over what to do for Henry.
It was truly awful and this is why I just wish it could all go away.
I wish I didn't have to be reminded more today that Henry has this condition, that I have to make all the decisions, that I have to do all the meds/collections/organisation myself. I am tired and almost 3 years of living this life, I am fed up with the lack of support and compassion from all the health professionals. It is a sad fact that the support and understanding has been a rare and suprising thing from the start but boy do I cling to it when I get it.
I wanted to write this today to get it out of my system. For other parents who are facing uphill battles in many other ways. It can feel overwhelming. It can feel isolating. It can feel impossible. And yet I do it. I continue to do it. I have already been doing it for almost 3 years.
The reason for creating this whole blog is that I wanted to write about what happens when things don't go to plan. When you life veers off course. When you think you have experienced the worst, and then it gets worse. And when things do get better and time does heal and you do learn how much personal strength and determination you have.
I'm not sure what you all will think of this post, but I am keeping Honest.
2 weeks you may question...not such a big deal ...
But it is. It means having to physically hold down Henry while trying to get the syringe in his mouth. It means that in the morning I have to now do his breakfast, give him 3 vitamins from 3 different syringes, get him dressed, brush his teeth, help him go to the toilet a few times, get his nebuliser ready, keep him still to do his nebuliser, clean his nebuliser immediately, then fit in him screaming and being physical to me while I hold him down for antibiotics.....and then get him to nursery for 8am. And some parents struggle just getting their child dressed every morning....!
Enjoy that every morning for 2 weeks. Morning and Afternoon. And with another nebuliser in the evening and pep masks and other physio. Where is the time for him and me to actually play together and have some special time?
So when the nurse calls 15minutes before I need to get him to nursery, I burst into tears. I am so tired. Cystic Fibrosis is an invisible illness on the whole. He seems so well at the moment and everything in my gut is telling me he does not need this antibiotic. The NHS likes to give antibiotics as a precaution which I understand, of course I don't want him to get his lungs infected from this bug, of course I don't want to take yet more time off his life becuase it could cause lung damage.
But what the hell do you do when you really don't think he needs it? When it really causes so much stress and exhuaustion to myself and frustration and anger in Henry?
I am again left in limbo as there is no research for or against treating what is frankly a very dubious way of collecting samples from his lungs (cough swabs on a 2 year old is pretty inconclusive).
And the nurse talks to me in a stern and authoritarian voice when she is talking to a mother who already has alot of her plate. Add this to the pot of trying to move to different area, find a new school, find a new job, deal with the unpredictable nature of Henry's father and his own issues he brings to me!
I don't mean this to sound angry or pitiful or judgemental but it is bloody hard raising a child alone with a chronic illness.
And it used to be so much worse.
Calls to the hospitals/ doctors/ Pharmacists would be almost every other day to check meds, check cough swabs, have clinics, routine doctor's appointments etc etc while also recovering from childbirth, hormones swirling around your body and having the least supportive and awful husband battling me with my concerns and questions over what to do for Henry.
It was truly awful and this is why I just wish it could all go away.
I wish I didn't have to be reminded more today that Henry has this condition, that I have to make all the decisions, that I have to do all the meds/collections/organisation myself. I am tired and almost 3 years of living this life, I am fed up with the lack of support and compassion from all the health professionals. It is a sad fact that the support and understanding has been a rare and suprising thing from the start but boy do I cling to it when I get it.
I wanted to write this today to get it out of my system. For other parents who are facing uphill battles in many other ways. It can feel overwhelming. It can feel isolating. It can feel impossible. And yet I do it. I continue to do it. I have already been doing it for almost 3 years.
The reason for creating this whole blog is that I wanted to write about what happens when things don't go to plan. When you life veers off course. When you think you have experienced the worst, and then it gets worse. And when things do get better and time does heal and you do learn how much personal strength and determination you have.
I'm not sure what you all will think of this post, but I am keeping Honest.
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