Thursday, October 20, 2011

Fibular Hemimelia -Let's Get "Real" -pains, pants, pictures, and all!

Now, I'm no pessimist; I guess I'm more of what you'd call a realist --and the reality of a leg lengthening surgery is "real" hard.  (Yeah, I know it should be "really" -but just follow along with the "real" theme).  Yes, I know that Ethan's outlook is "real" good and we have been "real" blessed by all those who have helped us get through these last few months, but there are things that I wished I had known beforehand to better prepare my heart and my mind.  Honestly, though, I have doubts about publishing this post because sometimes too much information is just that --too much to handle.  Knowledge is power, though --and perhaps someone can make a wiser decision after reading the blog or at least know what questions to ask at a doctor's visit.  Perhaps you can begin praying more specifically for your child when you know what they will face.

Nevertheless, this is my "Real" list:

1.  Your child will be in "real" pain about 4 days after surgery when he/she is weaned off of the epidural.  Watching your child's realization that this "thing on their leg" hurts --will hurt you more than you might have expected.  However, once pain meds are regulated, the pain will be tolerable.  Ethan only required pain meds before physical therapy after about the third week past surgery.  And even the need for medication prior to therapy stopped around week 10.  Kids are obviously different.  Some kids we befriended were still on pain meds every 4 hours weeks into their lengthening.

2.  You will be "real" intimidated and down right scared sometimes as you learn to care for your child after surgery.  When you leave the hospital, your next appointment will be in 2 weeks.  Two weeks will seem like a "real" long time --especially doing pin care and turning struts without someone reassuring you that all is well.  The pins will be "real" crusty and "real" sensitive and the cleaning will be "real" difficult during those first few days.  Pool therapy will be the most helpful for cleaning pins --as the water loosens a lot of gunk and aids in cleaning/healing the pins.  Eventually, the pins will calm down.  Ethan's top two pins have drained throughout the lengthening --especially if his leg was bumped.  The leg is so swollen that draining is quite normal.  The wires have proven to be the hardest to clean --simply because they hurt and pull his skin whenever they are touched.

3.  You will wait a "real" long time at a clinic visit --at Sinai at least.   We waited for 3 hours to see Dr. Standard at Ethan's 2 week appointment and then saw him for only 10 minutes!  The next 2 week visit was also a 3 hour wait to see Dr. Herzenberg because Dr. Standard was out of town.  So, the first month left us feeling quite alone and "real" frustrated!  When we saw Dr. Standard at the next visit, we did get much more time --and we able to ask a lot of questions.  We always felt, though, like there should be weekly visits or checks with a nurse to answer questions, etc.

4.  Your therapist will be "real" important!  We loved all of the physical therapists at Sinai.  Not only were they knowledgeable --as they dealt specifically with children with fixators on a daily basis, but I never heard one harsh word spoken in the therapy room despite whining, crying, and generally uncooperative children.  Ethan's main therapist, Sunni, checked his pin sites, reassured us about therapy, and was genuinely sad to see him leave.  The therapists also have a direct line to the PAs on call --which was always the best way to get a question answered or a prescription filled.  What the doctor never warned us about prior to surgery was the reality of physical therapy.  Your child will probably be in pain and may have sessions in which s/he cries.  Doing therapy at home on the off days will also be a challenge --both for you and the child.  I didn't realize that a lengthening procedure could be stopped if PT does not go smoothly.  That is, Ethan worked for 6 weeks to regain the ability to bend his knee.  Had this ability not returned, the turns would have been slowed down or stopped to keep his knee from permanent damage.  The same is true toward the end of the lengthening with regard to straightening.  After his range of motion in his knee returned, the new fear became losing the ability to fully extended his leg.  If a child develops a knee flexion contraction, then a knee bar could be attached to the fixator or they could require further surgery after the fixator is removed.  One child we befriended who was going through a femur lengthening experienced the fixator bar breaking.  After this, the child never regained knee range of motion and the lengthening was stopped --only mid-way through.  We met another child whose bone consolidated so quickly that she had to have a second, minor surgery to re break the leg so that lengthening could continue.

5.  Your child will probably fall and you will probably be "real" worried.  The first day Ethan stayed at the Hackerman Patz house after surgery, we got him up to take a few steps with the walker.  After two successful steps, he feel backward and landed on his bottom.  He screamed, I cried, and we all panicked.  Thankfully, nothing happened.  Only two weeks after surgery, we were in a car accident in Baltimore --a fender bender.  Again, Ethan screamed, I cried, and we all panicked.  After a trip to the hospital and X-rays, however, we were reassured that all was well.  The first week we came home --around week 11 -Ethan fell 4 times!  He turned over a rolling chair, tripped on his shoestring, and slid on the hardwood floor twice.  Again, no problems.  Dr. Standard said that a child in a fixator fell down an entire flight of stairs --this resulted in a broken arm, but no harm to the leg!  He did mention, though, that an older brother sat on a younger brother's "fixator leg" -and broke the bone!

6.  At times, you are going to be "real" discouraged and "real" tired.  Watching your child struggle isn't easy.  Ethan has had very few days in which he has been genuinely discouraged or cried because of the fixator.  I, however, have had my share of those days!  It's hard to watch him being left out as his friends run and play or to see simple things such as climbing stairs become a challenge.  Having a child in a fixator is reminiscent of having a newborn.  In the beginning, I didn't sleep because I constantly checked on him!  Staying in a different city away from your family is probably harder than you think.  But, God can provide you comforting friends.  We met many parents who were in the same situation and took comfort in their presence, rejoicing with them as their children made strides toward healing.  Leaving those friends is also "real" hard!  Going back to school was especially difficult for Ethan in the beginning.  Being in Baltimore, we weren't around a lot of other children.  When first grade started, Ethan commented that school was simply too "sad."  This sadness came as a result of watching his friends play on the playground, participate in P.E., or simply act like kids.  This feeling has waned as time has gone on, and he has simply gotten accustomed to his limitations --especially realizing that his aren't permanent limitations while other children aren't as blessed.

7.  Things will be "real" different after "turning" stops.  I was quite surprised to see the difference in Ethan after we stopped turning the struts.  Honestly, the last few weeks of turning were the hardest, as was therapy.  Logically, his leg was being "stretched" to the limit --as were his muscles and tendons.  In as little as a week or two, therapy was suddenly easy --and evoked little response from him.  Also, since we stopped turning three weeks ago, Ethan hasn't had a pin site infection --despite the fact that he had an infection for at least 6 of the 12 weeks while turning.

8.  You'll ask yourself some "real" hard questions along the way.  Should we have done this?  Was this the right time?  I second guessed myself in spite of the obvious answers to prayer and Ethan's progress.  Some days seemed so challenging that I wanted to find the mother in the Sinai video who says that the leg lengthening was all "butterflies and rainbows" for her daughter and ask her what drugs she was taking!  All kidding aside, right before turning stopped, if asked, I would have said I would not do this over if given the chance.  Today, however, I am glad; sometimes with the end in sight, our "sight" becomes clearer.

9.   Your attitude will be "real" influential.  Ethan has done well despite my meltdowns because he hasn't seen them!  Yes, he has heard me say that I want the fixator off and I want him to be able to play again --even to wear two shoes again or to simply take a bath!  However, more often, he has heard me say that God can help us get through this --that we need to be thankful for a doctor and a procedure that will change his life --that this, too, will pass!

10.  Finally, your need for your Savior will be "real" apparent --so much so that it will change your life.  Knowing that there are things that you cannot change and comfort that you cannot bring will send you to your knees, bowing humbly to the only One who can bring both peace and assurance.  I have come to greater knowledge of our God and for that I am thankful.  I tell Ethan that God entrusted him with this condition and these months of difficulty and this is one of his chances to bring honor and glory to the name of God.


Did I mention that your child's leg will get "REAL" HAIRY?!  Apparently, the fact that the leg never exfoliates creates a very hairy result!

 Riding His Sister's Pink Powerwheels 4-Wheeler, is well, "Real" Cute! -and an excellent way to transverse the yard!

Oh, and Emily is still "Real" Cute, too! 

Playing with your sister in leaves is "real" fall fun!
Finding pants has been a "real" hard task.  There are very few places that offer snap off pants anymore!  Thanks to the grandparents, Ethan has a few pairs of adapted pants as well!

Finally, duct tape will be "real" helpful when it's time to tape down the struts and the lifted shoe makes a "real" difference!  The right shoe had to be lifted to compensate for the fixator -and it stopped him from falling and made him much more secure on his feet!