Top tips when facing surgery

I have had a few parents contact me, telling me that reading about our journey through surgery has helped them in facing their fears of their child’s (or their own) upcoming surgery.  It is kind of ironic that I started the blog with the intent to avoid surgery at all costs – and we tried nearly everything we could to do so (just read the past 4 years of posts!)  But, after all is said and done, we were destined to walk the entire road, explore every aspect of treatment for this beast called Scoliosis.  So, here are some tidbits/tips to help you on your journey:

1.  Realize that surgery is no joke, but that it will not be as bad as you think.  Get a good Doctor.  Go the extra mile (or hundreds) to get to a hospital that is skilled in working with kids and get a surgeon who does a LOT of Scoliosis surgeries.  Then, trust them to do their job right.  We had our perfect match at Mott Children’s Hospital at University of Michigan (2 hours away), but do your research to find a good place near to you.  Surgeries and techniques are getting better every day.  It will not be easy, but it will not be as bad as you think.  Just don’t let your mind go to those dark places…especially around your kids.

2.  Keep smiling and distract yourself so you can be positive for your child until they can’t see you anymore…then, you can do what you need to do.  When we were faced with the final “see you later” until after surgery, when they started wheeling my first born down the long white hall, I started to lose it.  But, I sucked in the tears, slapped a smile on my face, and cheerfully gave her a peck on the forehead and a “see you later, we love you”.  When she was out of earshot – the floodgates opened.  She went into the operating room feeling positive, and that is how she came out.  The days to come were challenging, but she at least started recovery on a positive note.  Panic will do no good.

3.  Get into a routine at the hospital – just like when they were babies!  Wise Moms told me – make a spreadsheet of the medicine schedule, keep track, and stay on top of the staff.  Even the best hospitals rely on the parents to be present and aware and helpful.  I kept track of everything from urine output, fluid input, meds, what she ate, etc.  It’s all helpful.  My hospital room had a white board for the purpose of communication.  When you are sleep deprived and foggy-headed, write down every question and all data to help interact with the staff.  Also, our daughter had a tough time staying awake long enough to do the necessary eating, drinking, and movement.  So, we put her on her infant schedule of sleep, wake, eat, movement, then sleep.  We knew that 30 minutes after she took a Valium, she would be out cold, so we had to push her immediately upon waking up to take advantage of our short window.  Not all patients are as sleepy as ours was, but if yours is sleepy, you have to make the most of every waking moment.  There wasn’t a lot of time for her to watch tv, etc, when awake in the hospital – that came later.  In the hospital, be ready to work.  It is not vacation.

4.  Try to have another adult there so you can take some breaks.  My husband and I both stayed at the hospital in her room.  The hospital also had an exercise room and a nice cafeteria. So, twice a day we would each take a turn walking the long length of the hospital and getting food, taking our precious time to chew, etc.  If people came to visit, I would have them go with me so I didn’t have to eat alone every meal.  We would also each take an hour to go to the workout room during the day, so we could unwind and keep our health up.  It really helped us both.  On the same note, try to eat as healthy as possible.  It’s hard with all the stress, but try.  You need to stay healthy for your child.

5.  Have a lot of pillows for the ride home – car rides can be bumpy and painful.  Create a padded nest.  We have a small car, so we put her in the front seat, reclined it as far as it would go, and padded around her.  Also, we knew she would sleep 30 minutes after a Valium, so we gave her one 30 minutes before we left.  She slept right through the entire car ride!

6. Never underestimate the power of going home.  You may think she/he is not ready to leave, but the instant they walk through the doors of home, they start doing a lot better, a lot faster – and so do you. Stick to the meds schedule at home, even at night, or the pain will get too far ahead of you.  But, the recovery is very fast when leaving the hospital and getting back to familiar comfortable territory.

7.  Get everyone you know praying, but refer back to #1.

Peace!

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3 week post-surgery checkup

I realize that I have not posted updates for a while.  Some of you have been kind enough to actually notice, because you are following our adventure through surgery and recovery.  Thank-you so much for riding along with us as we go through this, and offering your prayers and support.  I can’t express how moved we have been by the outpouring.

 

I think one of the reasons I have not posted updates is that we are now home and, surprisingly, back into somewhat of normalcy at home – as much normalcy, that is, as one can get in the throws of Christmas break.  But, things have been so extraordinarily close to normal that it has been surprising – I was not expecting it so close to surgery.  In fact, just this evening my daughter got an invitation to a friend’s birthday party and I said “you can’t go because your Uncle and Aunt are coming from Seattle to see you.”  But, it didn’t actually occur to me that, were they not coming, she would also not be able to go because she is still in recovery.  I guess that means that she has been getting pretty close to “back to normal” as she can.  She still can’t sit without discomfort for long periods of time, so school is more of a distant thought right now, but I couldn’t be happier with her progress.

 

Today we went for our 18 day post- surgery checkup.  It was supposed to be 2 weeks, but with every day being so precious on the road to healing, I didn’t feel I could say “2 weeks”, but it’s not yet 3 weeks.  It is amazing how much recovery happens every single day.  Just yesterday, she stopped taking pain meds altogether.  She had some withdrawal headaches from the Oxycodone, but she is mostly past that now.  And, she was able to go about 24 hours now without Valium.  Her back started to spasm in the lumbar area (below the level of her rods), but lasted only a day or so (before she went off the Valium).  She has been going to the High School gym with my husband over break and walking, going on the elliptical (slowly) and even dribbled a basketball for a few minutes because she just couldn’t help herself!  Her arms got tired pretty quick and she had to do it completely stick straight, but it helped her get over her feelings of jealousy as the Varsity girls ran drills and shot hoops with abandon.  She can’t wait to get back at it!

 

The Doctor said today that everything was looking great.  They pulled off the bandage and now we are left with just steri-strips.  They said that they can fall off and she can shower normally now – which will cause them to fall off eventually and help us avoid the dreaded “pulling off of bandages”.  There were some thread ends from stitches that needed to be snipped, but she appears to be all scabbed over.  She is a little creeped out about the scabbing and is almost afraid to let the incision be totally exposed – afraid it might burst open or something.  But, we have assured her that she is healing very well and the incision is in the scab phase.  With the scab phase comes the itching phase, but we try our best to ignore that….

 

Her numbness in the outside of her left leg is reducing, and they feel it should go away entirely before too long.  Apparently it is a common problem, caused by placement of apparatuses on her hips, under her body during surgery – they can press so much on the hipbone area, that the nerves running down along the side of the leg get a bit numb for a while.  Also, her left shoulder is now protruding up quite a bit.  This makes sense, since they pushed her spine over from the right…naturally, her body will all want to move over to the left and up…but, it’s already better than it was post surgery, and it will continue to normalize as her muscles get used to their new configuration.  Our Doctor thinks her shoulders will eventually be even, which is wonderful.  The Doctor wants us back in 4 weeks, and she even said our daughter can go swimming at that point – it will be a great way to loosen muscles.  We just can’t let her twist…twisting is a no no for a while now.

 

This weekend I play host to my brother and sister-in-law, who are flying in from Seattle especially to see our daughter and rejoice in her recovery.  I am excited to see them – my brother has always been like a best friend to me, we have been through so much together.  It was strange going through this without him present, but I am happy they can come to be with us for 2 days.  We also have a bunch of family coming to join in…should be fun.  Until next time…