Thursday, June 29, 2017

Spinal Fusion


We finally decided to have the Spinal Fusion.  Haven needed to have her spine fused from C3 - L4.  She received two Titanium rods (one on each side of the spine) and a bunch of bolts.  Along with bone grafts.  This was to help to sharp curves in her spine caused by growth hormone injections she had been taking for a few years.


No matter what surgery Haven has she always spends a few days in ICU.  It's just expected.  Most children who have a spinal fusion are out of the hospital within 3 - 4 days.  Haven spent about 7 days at the hospital.  On the 2nd day after surgery they decided Haven should climb some stairs.  She doesn't do stairs very well without surgery - so I'm not sure why they wanted her to do it after having surgery.  I had only left the room for 20 minutes when they decided this would be the best time to do it.  Well she fell on the 2nd step - this split the incision in her back open.


As you can see in this photo - the incision popped open in a few spots.  It was only being held together with steristrips.  They could only keep the blood stopped for a few seconds at a time and steristrips wouldn't stick.  So within the 20 minutes I was gone - she feel, split her back opened, bled like crazy, and.....


received numerous staples.  When I came back up from the cafeteria with breakfast Haven was so looped up on medication and slurring words telling me she had her back stapled. I kept telling her she didn't and she finally rolled over to show me. I freaked out and called all the nurses in and started screaming at people.  I couldn't believe they would do this and not even call me.  We got her out of the hospital the next day and had Physical Therapy start working with her at our house.


A few weeks later I took her back in to have the staples removed.  She wanted me to photo every staple taken out and even video it so she could make sure the nurse knew what she was doing.  Haven is quite particular when it comes to medical procedures.


The nurse took great care in removed Haven's staples.  I was very surprised at how well I handled it.  Haven has a very very high tolerance of pain due to ROHHAD.  I was probably feeling more pain than she was just from watching.


Grandma and grandpa came out to help with Haven and work with her in getting back on her feet.  They were great help with the PT guy and gal.  They are always amazing at having dinners and the kids love having them over.  Oh and Bella too.  She has to be in the photos.


After Gma and Gpa Fowler left we flew Grandma Cook in from Virginia for a week.  She is amazing at getting the kids to sit and have tea time.  I can't get them to sit at a table for anything.  These kids love their grandparents.


Haven also had her cath-o-port replaced at the same time she had the spinal fusion.  We try to consolidate surgeries when we do one.  We go around to all of her doctors and ask if anyone would like to tag on to labs or surgeries - this helps to do one round of anesthesia since ROHHAD does not play nice with anesthesia.  She had her original port put in at age 4 when she was originally diagnosed at Johns Hopkins.  So it was replaced after almost 10 years.


 All that mess in the above pictures - after a few months she was finally starting to heal.  Without an immune system it takes her a very very long time.


Finally the x-rays to see what's going on inside.  Rods and bolts.  My Terminator!


Comparison.  The left is the new spine (Terminator Spine) and the right is the old spine.  WOW.  Such a difference.  And her Cpap machine has been dropped from a level 14 to a level 6.  She breathes so much better now.  She sleeps so much better.  It's been amazing for her.  

Looking back now - a year later - I'm happy we did it.  It was a long recovery but she has really gained a lot having done the surgery. The surgeon was really amazing.

Sleep study before Spine Surgery


Before we could have the surgery on her spine we had to have a sleep study to make sure she was completely ready for surgery and she could handle being put under.  Of course getting ready for a sleep study is always a major process.

So it's been years

So it's been a while since I updated this thing.  Since October 2015 Haven did have surgery.  She had surgery to removed the tumor in her abdomen.   We ultimately found out that it was not another Neuroblastoma tumor - which made us extremely happy.  We did find out that her reproductive organs had somehow floated up out of place and that is actually what had the tumor on it.  So the tumor was removed and she made a nice recovery from that.  We were very lucky on this one.