Tuesday, May 27, 2014

Day 1694 - Pectus Excavatum - An update

They said it would be a roller coaster ... they were right.




It's been a month since I posted about Tahlia's Nuss bar procedure to rectify her pectus excavatum.  Four long weeks have passed and I thought she would be back at school by now.  She's not.  As we left the hospital they warned us it would be a long road to recovery. That there would be ups and downs.  That she would be physically and psychologically exhausted.  And damaged.  That her body would take a long time to adjust to the surgery, to having a foreign object inside her and to having her bones pushed into a different position.  The recovery is long and the recovery is slow.



For the few days following her surgery Tahlia was in extreme pain, but she was also on extreme drugs so her pain was one spent in a land of floating clouds.  During that time she was ecstatic at the immediate success of the surgery.  She was so happy with the results.  She couldn't believe that her body was now "normal" and she no longer had to live with the "shame" of having a hole in her chest.

Since we've been home that relief has turned to shock.  She now looks very different than she did before.  Mostly in a good way, but there is still a part of her that is adjusting to the changes.

Since we've been home she is also adjusting to a life of pain where there are no floating clouds.  Sure there is some pain relief, but only enough to take off the edge.  The pain is less intense now, but more widespread.  As her body adjusts to the bar she is experiencing back and shoulder pain in addition to the pain at the site of the bar.

Night time is the worst.  She is unable to sleep on her side, or in the fetal position, or on her stomach.  There is only one position - on her back. For the first few weeks she was able to sleep fairly comfortably in her bed.  But three weeks later and her back and chest were rejecting this position.  We tried putting pillows under her legs to raise her knees.  It worked for a night. We tried stacking cushions around her body in the sitting position, but the softness of the pillows was no support for her back and the pressure on her chest was too much.  So now she's at that point where she starts the night in bed and finishes out on a chair, sleeping upright with her back supported by the back of the chair and her legs on an ottoman out front. Oh how we wish for one of those cool adjustable hospital beds. 

As far as day time is concerned she is doing quite well.  She is going for short "excursions" to the shops, for hot chocolate and to visit family.   The car rides are reasonably manageable (although corners, speed bumps and round abouts are not her favourite thing). She is able to walk without too much trouble although she is slouching in an effort to protect herself.  She is unable to walk completely upright yet which is stressing her out given she has some modelling gigs to look forward to.

She is managing to do some brain work including some reading and research for school.  Although this is still limited to about an hour a day.

She is able to carry some things - like her handbag - but anything heavier than (say) two kgs is still beyond her.

She can now dress herself, shower and reach up to do her own hair.  But this is still a very slow and uncomfortable process.

She is still on low doses of morphine in addition to anti-inflammatories and paracetamol based pain killers, but her morphine intake is less frequent.  Rather than every four hours we're down to just three times a day.

She is smiling more and even laughing a bit.

There are still tears. There's some remorse. Concerns. Fear. Uncertainty. Unknowns.

It's a roller coaster but for the most part the ride is starting to ease up.

We did some "googling" overnight and discovered that her Nuss bar journey is very much the same as that of others.  She's right where she should be.  In some ways it sounds like she may even be further along in her recovery than many. It's good to read the stories of others.  She is not alone. Which is why we continue to share her story ... so that other young women can feel the support of someone who has walked before them.

Just as we are now feeling the support of someone who has walked before Tahlia.   My Sweet Pectus is a  blog dedicated wholly to one man's pectus excavatum journey.  Thank you Pectus Dude so much for sharing.







13 comments :

  1. How awful - fingers crossed it's a quick recovery now....

    ReplyDelete
  2. Sounds horrendous. Stay strong x

    ReplyDelete
  3. Oh the poor thing, it can't be easy to keep positive when you're in so much pain for such a long time. Luckily she has an awesome mumma to help her through it all x

    ReplyDelete
  4. I'm sorry to hear Tahlia is still in so much pain, but I'm glad you've found support and encouragement from others who have had similar experiences.

    ReplyDelete
  5. oh, this whole post just made me feel so sad for your gorgeous girl. :( I am glad she is on the right path, and that she is where she should be, but gosh, I hope she is feeling "normal" again sooner rather than later. Poor chook :( Thank God for blogs and the internet and being able to connect with others who know EXACTLY how you feel. Sending you both all the love. xo

    ReplyDelete
  6. I'm glad she is improving, though I'm sad she is still in so much pain. We had a a friends daughter go through a different, but very painful surgery a few years ago, and she really struggled with similar things as well. (I think hers was on her spine.) The psychological stuff was really hard on her as well, but she got passed it, and now feels so much better.
    I hope the rest of Tahlia's recovery is quick and relatively painless. xx

    ReplyDelete
  7. Your poor girl! I so felt for her reading this. What a roller coaster xx

    ReplyDelete
  8. Oh it must be so hard for you to see your daughter in pain and knowing that there isn't much you can do about it. I hope that the recovery process keeps moving forward and she's pain free soon.

    ReplyDelete
  9. Oh Leanne, what a traumatic ride for Tahlia! Thank goodness she has you by her side. Take care of you both x

    ReplyDelete
  10. Oh my goodness what a journey she is on. Must be so hard that there isnt more you can do to help take away her pain. #teamIBOT

    ReplyDelete
  11. She is very brave. Hope each day is better and she is feeling less pain and more confidence. Such a big thing in her life and yours.

    ReplyDelete
  12. What an incredible young girl you have on your hands and what an incredibly strong mum she has!
    I am so sorry for all the pain, but am happy to hear you are on the ride to toward the good side.
    I am sending wishes to the universe for less pain and all the good healing vibes to be sent your way.

    ReplyDelete
  13. I had no idea that this was happening in your life. I hope everything continues to go well.
    Thank you so much for this info too. I have a non-related family member who suffers this condition and who desires this same surgery. I shall pass this info on to him.
    Thank you for sharing and all the best to your family (in relation to today's post too.)
    xxx

    ReplyDelete

I love hearing your thoughts! Keep them rolling in :)

Related Posts Plugin for WordPress, Blogger...