Everytime I'm ill or in pain I think what if I couldn't communicate what was wrong with me. What if I couldn't touch the place it hurt to tell someone. What if I had to suffer in silence with my only way of telling someone that somethings wrong is by crying. This is what my baby boy goes through everyday. He can't tell me what hurts and how severe the pain is. All he can do is cry to tell me he's hurting or uncomfortable.
This week I was taken ill with what was thought to be viral meningitis, actually turnt out to be an incredibly nasty virus. I was able to communicate that my head felt like it was being pulled apart from the inside, that I couldn't look at light because it was blindingly bright, that I couldn't walk properly, that all my muscles ached and that my neck was very stiff and sore. It made me think what an earth does someone who can't communicate do when they feel like this. How are they supposed to get across the huge amount of pain they are in. I was scared when I couldn't see I felt like I was alone and unsure of what would happen next. I am fortunate enough to be able to voice these feelings and get help but Ethan can't.
I was put through a barrage of tests from blood being taken, ct scans with scary die being put through my body at an alarming rate, lumbar punctures failed and successful.
I didn't think about how much pain I was in or actually how scared I actually was, my one and only thought was my little man. This is not a rare occurrence like it is for me, no he goes through this all the time (well maybe not the lumbar puncture but everything else).
Ethan was just one day old when he first had a blood sugar test yes only a small prick in your finger but none the less he was a day old. He was just four days old when he had his first blood test and cannula put in. It's hard trying to find veins with ethan (something unfortunately he has got from me). The first time they tried it took ages. I watched as lots of nurse attempted to get blood from my son to no prevail. His first cannula took 4 attempts leaving him with many bruises on his tiny body.
Ethan was just 7 days old when he had his first lumbar puncture, one of only two times I couldn't watch him go through a procedure, the second being only a few months ago when he was being held down by nurses screaming his head off to try and get yet another cannula into him. I heard him screaming from the corridor and to this day it haunts me that I left him. Even more so now that I had one the other night and at the age of 30 I felt the pain of what my tiny baby went through. After the first attempt of mine I just burst into tears of utter horror that my 7 day old baby boy had been put through that. He couldn't tell anyone how painful it was and it cripples me that I wasn't there to hold him. This all came flooding back to me when I had my second lumbar puncture. I cried through the second one and sobbed to the lady in recovery how I couldn't believe I left my 7 day old baby to have one without me there.
Ethan had mri scans and ct scans as a tiny week old baby and although by this point he was so drugged up from seizure Meds he didn't know what was going on, seeing his fragile body be put through that is heart wrenching. He still felt every inch of the pain.
Everytime Ethan gets rushed in for increased seizures he has to have bloods taken. This is no easy task and seeing his body full of bruises from the attempts is horrible. He goes into hospital firstly not being able to tell anyone what's up, what's hurting or how he feels, then he gets prodded and pricked whilst everyone tries to work out what is wrong with him. I can only imagine how scared he must feel in a world unknown to him.
Ethan has no voice, I need to be his voice. It's often a process of elimination to find out what's wrong and sometimes we never do. Like with a baby you start with checking if they are wet, whether they are hungry, whether they need attention or whether it's pain. More often or not its pain and pain relief sorts it out. Then you next need to find out the source of the pain. Ethan quite often gets sore legs and this can be easily spotted by the fact he can't straighten his legs at all.
Sometimes you can detect a tummy ache by feeling his tummy or bringing up wind. I can see in his throat if it's red or inflamed and I can usually tell if his ears hurt by touching them.
This unfortunately is where it stops. I can't tell if ethan has a head ache or he aches from physio or he's teething or of he's just been in the same position too long.
My main objective is to keep my soilder comfortable. This can be achieved by moving him regularly, pain relief and cuddles.
Although he can't tell me what hurts or how he's feeling I hope I can continue to meet his needs through the power of love.