Finally getting a chance to update now!
Thursday wasn't too bad; met the surgeon before the procedure went ahead and we had a bit of a chat about Alyssa's history. After hearing her story (as much of it as I could actually manage to, with an unhappy Alyssa wanting to get back to play with the "toys"!) he said that Alyssa wasn't the usual type of patient to be having this procedure (anal stretch) done, because it was usually children with chronic constipation who required it. This I already knew due to my own research, but he also said that he still felt it would help reduce her pain somewhat so he was prepared to go ahead with it. He wanted me to understand that - if it helped her - it would unfortunately only be temporary because the muscle strength of a young child will return much more quickly than that of an older child. He felt - much like Alyssa's paediatrician - that it is actually a problem with the propulsion of her bowels that is Alyssa's main issue, which is causing her pain ... that and her inability to feel "normal sensation" because of her altered sensation. She may well be straining to pass bowel movements because she feels some sensation but not enough to know how hard she should be pushing, or she feels the urge to push too easily but feels it as pain. He said that there are a couple of other surgical options that could help her with the propulsion problem of her guts, but that - because he knew we are going to New York next week - there was no point discussing those options at present, until we see what the "experts" say. He will be very interested to hear what is suggested to help with the gut pain.
The op went ahead and was pretty short duration. She came round in her usual "I can't actually walk yet, but I'm not going to stop trying" kind of way ... she never seems to have a sleepy period after a GA! She's always completely hyper afterwards and wants to do things immediately, even though her body isn't in agreement with her mind! But she was trying to attack her poor little rear end straight away and complaining about how "soooo" (sore) it was, but thankfully that subsided fairly quickly. She also had her other remaining teeth crowned while under the GA, so she now has 4 "shiny, silver teeth" (which only princesses have!) ;-) so hopefully there will be no further chewing damage for a little while. Will see the dental team in 3-4 months, unless I have problems before then!
We had a pretty rough time Thursday night, she was her usual begging self when put to bed that night. There really are no words for how awful it is to hear your child crying in pain, and begging for you to help them ... or how cruel it feels to pretend you're immune to their cries. But I have no choice but to just try and ignore her until she manages to fall asleep, because I've already given her everything she can have by that point and am then completely powerless! :-( She begged for help on and off all Thursday night, then was up from 6:30 Friday morning doing the same, and I was really losing the will to live .... but trying to remind myself that - for the first time ever - she was feeling post-operative pain, and it was bound to be confusing for her! And holding on to the hope that it was just post-op pain; as I had really hoped that once we had the op, I wouldn't have to sit here and listen to the cries for help any more! *sigh*
Anyway; she is much improved today. Hadn't managed to pass anything up until late this afternoon which was starting to concern me, but she eventually went little and often - with a fair amount of pain unfortunately - but was at least relieved for a little while. She's had a few really bad bouts today, but in-between times she's been really happy and hasn't been straining for hours on end. She went to bed last night playing games, giggling and babbling away to me ! which is just unheard of ... and then went straight to sleep! I can't remember the last time she didn't howl for at least an hour at bedtime about being in pain ... so am optimistic that the painful bouts really are post-op pain and will continue to reduce. She is still sore when going, but that again could still be because she's tender inside.
It's now a week until New York - well, in a week's time we'll literally just be landing in Newark Airport (barring any delays!) so lots to sort out this week. Had a bit of a joke trying to get travel insurance for Alyssa - despite telling the companies several times that I didn't want or need THIS CONDITION covered, because she was going specifically for testing/treatment ... but that I still wanted to make sure she was covered for unrelated accidents/injuries etc! That apparently is confusing ... but I seem to have managed it. Currently sorting out the currency stuff, and what I need to do about all her medications but fairly sure I'll have it all done by the time we leave!
Ok, off to have a bit of "me time" and will post again soon! x x x
Welcome to Alyssa's blog ...
- Alyssa's Mum
- My name is Moira, and I hope to share with you what my daughter's life has been like so far ... so you can all truly understand and appreciate the gift of pain, which we take very much for granted! Alyssa does not feel "peripheral" pain, which means she does not feel pain anywhere other than internally. This has led to many unintentional injuries and self-mutilation. My aim is to not only find others like Alyssa, and help those who may be going through what we are, as well as raising awareness about this condition, and how feeling pain is actually a GOOD thing! I am thankfully now part of a support group run on FB which is an amazing group of people, who all have varying types of experience with pain insensitivity. I can be contacted directly via understandingalyssa@hotmail.co.uk
3 comments:
Bless your heart! I am sure that you could very much use some "me time".... but being a mom myself and you with a child that so needs your attention, I wonder just how much "me time" you were actually able to get???? :)
I am thankful that you were not spooked by how much your story has moved me, and that you're not tempted to block me from being able to post (I'm fairly new here; I'm not even sure if it's possible to do that?). For I want you to know that it's not simply intrigue; instead, I so badly wish I could do something to help. Being a zillion miles away (okay, so perhaps there's a few miles of exaggeration going on there), I don't see how that it's possible to do anything of aid other than to pray. So, I am thoroughly happy and willing to do that. I already feel God so much burdening me to that I don't know see how I would be able to keep from it.
I am so thankful that your daughter felt so much better on Friday night. I hope that it has been a continual improvement since then! Poor little thing, she's had too much painlessness and pain for anyone her size and her years.
Wow, you know what just dawned on me as I wrote that? I have hated that she's had so much internal pain when she feels no pain on the outside at all, but then it just dawned on me of what a blessing that is. What if she didn't feel pain on the inside either? Then, how would you know that you needed to something about it?
Okay, I am assuming I didn't just think of something that you haven't thought of yourself. Sorry, I'm slowly processing on something that I've never even heard of before nor knew existed until I ran into you.
I will continue asking God to heal Alyssa from her recent surgery (and that it'll last!) and for Him to take care of you both on your journey to New York. May He give the doctor you're seeing wisdom beyond her own, and may you leave our states with more hope even than you come here with.
May you feel God carrying YOU in your pain! and may He help your daugher!
sharon
Thank you for your thoughts. You are right, it is one thing to know that she "doesn't feel pain" but quite another to get your brain around. There are many things which occur slowly.
As to the internal pain, it is a double-edged sword. Yes, it makes her understand what "normal" people feel and will help her adapt to life as she grows - because she will at least be able to comprehend what pain is like ... and you are correct in thinking that if she has abdominal pain then at least we know something is wrong. My biggest fear when we realised she did not feel pain was that she would develop something undetectable by other means such as appendicitis - a fairly big killer in children with Pain Insensitivity - and then I started being glad that she could feel some internal pain.
However; that then goes both ways. We still do not know what causes her internal pain - despite many different types of investigations, so it is really cruel to have her be disadvantaged from most normal 2 year old day-to-day activities ... and then also fairly constantly in agony with no-one being able to help her. Plus - something which occurred to me fairly recently - is the possibility that because she is always in pain, we will overlook something like appendicitis ... because we are so used to her being in pain. We may still miss any potential warning signs, because we dismiss them as being HER "normal" pain.
It's a constant thought process really. I try not to drive myself insane! ;-)
Bless your heart! I'M SO SORRY!!!!!!!!! Really, I AM SO SORRY!!!!!!!!
Life isn't at all fair, is it? Sometimes, it's plain out cruel! Thankfully, (as the song sings) "this world is not my home, I'm just a passing through...." But meanwhile, we've got to figure out how to deal with it, what to do with it, how to live it... and sometimes, just how to survive it.
I can't even almost relate... so don't even hear me as trying to. Just hear me as sharing my own 'minor' experience compared to yours. My oldest daughter (she's 19 already!) was miserable as a child. She had stomach issues herself. Couldn't go to the bathroom normally. Cried every day. But mostly, it was at night that was the most miserable. She'd look at me like, "Can't you do something please." I hated I couldn't. I used so many suppositories trying to give her relief. Her belly bulged more than it should have (I'm sure from it's fullness). And literally, her breath stank! All because she couldn't go to the bathroom as she should. Ugh! It was horrible. The doctors could never find anything. And finally, eventually, in some wild way, it worked itself out.
I only shared that to say that that is evidently a horrific pain in itself. My daddy is 76, and now is struggling horribly with it himself. It is so painful! And kills his back. It makes him sick. I suppose what I'm saying is that it truly is an astronomical pain. And not only that, surely it's toxic!
Bless your heart. "A double-edged sword" is unfairer than most!
She's a precious girl! Beautiful! I do pray that this surgery does what it was meant for. And that the doctors in New York will be surprisingly helpful in all kinds of ways when you're there.
Hope ya'll sleep exceptionally well tonight. :)
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