Well that title is a real upper, huh?
The summer of 2007 was actually full of hope, excitement, anticipation and joy. I was pregnant the entire summer until my water broke late the night of August 19th...and then Bennett's highly traumatic birth occurred on August 20th (and our NICU journey continued for the next 70 days). Bennett suffered in ways that were unimaginable, and the affects of watching our child suffer in such horrific ways changed us to the depths of our core.
That being said, this summer has mirrored it in many ways. It has been brutal.
Children with cerebral palsy often have muscle/tone/bone deformalities as a result of one's brain damage. We have monitored Bennett's hips for YEARS, and this summer it was determined that both hips were slipping out of socket and it was time to anchor those "hip balls" back into his sockets with steel plates. Sounds easy-peasy lemon squeezy, right?
We were told this was a very common surgery, the recovery is pretty text-book for 6 weeks of rest, and then we should be good to go. Back to summer school! Back to swimming in the pool! The 2nd half of our summer had so much hopeful anticipation...
The surgery went so well. The surgeon was able to avoid a body cast and we went home 3 days after surgery. My mom helped us so much with Jackson and Reagan during this time - she kept their days as "normal" as possible. We brought B home from the hospital super fragile, and he was so heavily drugged that I was literally checking to make sure he was breathing throughout the nights that followed. We had been told that after a week it was fine to take off his dressings and give him a bath. So we did. He screamed. We thought it was just typical post-surgery discomfort.
Towards the end of week TWO following surgery, B was in GREAT discomfort and then started to ooze blood from his left incision. My mama instinct knew that was not good. Sometimes we just KNOW when something is wrong with our baby, right mamas?
Back to the hospital we went and after an x-ray revealed that the left steel plate had slipped out of his hip bone, I cried and we headed back to a room to prep for surgery #2. Shock and disbelief turned into pure energy and we pushed through the 2nd surgery to get him set on yet another path to healing. The surgeon discharged us and said to "handle him like an eggshell," so that is exactly what we did.
Over the next 6 weeks we moved Bennett as little as possible. The main things we carefully did were change him and move him from bed to wheelchair, and back to his bed. We soon found out that he had a staph infection and heavy antibiotics were administered for two weeks. His left incision continued to ooze, so wound care was now added to our parenting resume.... and our sweet boy handled it all like the CHAMP that he is.
Then, finally six weeks after the second surgery we headed back to the surgeon and got x-rays of his hips that showed both hips healing beautifully. Cleared for summer school! Cleared for physical therapy! Cleared for swimming in the pool! We were so excited for Bennett to return to his "business as usual."
Yet after one day of summer school, and a weekend of home activities, by that Sunday night our sweet boy was screaming in pain and something was very wrong.
By Monday morning if we came to Bennett's left shoulder he would cringe in pain and start screaming before we even touched him. After getting on the phone with our medical team, they said it could just be typical soreness in his recovery, but our hearts knew something was wrong. Pain meds got us through that day but we knew something was not right.
The next day we couldn't stand to watch him in pain again so we went to get x-rays of those hips (and I took clothes for a 3-day hospital stay for surgery #3). I thought for sure that was the direction that we were heading.
Much to my surprise, the hip x-ray looked perfect! Bennett's hips were healing beautifully and I stood there utterly flabbergasted. I then asked the NP to do a thorough exam to see if she could figure out what was wrong....when looking at his legs she noticed swelling around his left knee and sent us down for a second x-ray.
Mystery solved! Hair-line fracture in his left femur, right above his left knee. We were then told that secondary fractures are very common for kids who have had very little activity over long periods of time...basically he had very brittle bones, bless his little angel heart.
But we did get some good news, finally! We did not need a cast- we could just keep the left leg in a straight stabilizer for 2-4 weeks (so it wouldn't bend and so that total healing could take place).
We are currently nearing the end of week 2 post fracture, and our boy has his smiles back...we are seeing glimmers of our happy Bennett boy and could not be more grateful! Oh, and by the way- at this point we will NOT be doing any more surgeries ANY time soon. This one, I mean *two* surgeries, were absolutely exhausting and trying in every way imaginable.
Watching your children suffer is one of the most difficult things imaginable as parents. We have seen our boy suffer in such horrific ways, that at times our hearts cannot handle the pain. God is sovereign and we trust him 100% with Bennett's life. There is SO much uncertainty around the future and what all he is going to need to to have the BEST quality of life and most enjoyable LIFE experience. We will surely make mistakes along the way, but our hope is in HIM, the author and perfecter of our faith...JESUS.
Over the next 6 weeks we moved Bennett as little as possible. The main things we carefully did were change him and move him from bed to wheelchair, and back to his bed. We soon found out that he had a staph infection and heavy antibiotics were administered for two weeks. His left incision continued to ooze, so wound care was now added to our parenting resume.... and our sweet boy handled it all like the CHAMP that he is.
Then, finally six weeks after the second surgery we headed back to the surgeon and got x-rays of his hips that showed both hips healing beautifully. Cleared for summer school! Cleared for physical therapy! Cleared for swimming in the pool! We were so excited for Bennett to return to his "business as usual."
Yet after one day of summer school, and a weekend of home activities, by that Sunday night our sweet boy was screaming in pain and something was very wrong.
By Monday morning if we came to Bennett's left shoulder he would cringe in pain and start screaming before we even touched him. After getting on the phone with our medical team, they said it could just be typical soreness in his recovery, but our hearts knew something was wrong. Pain meds got us through that day but we knew something was not right.
The next day we couldn't stand to watch him in pain again so we went to get x-rays of those hips (and I took clothes for a 3-day hospital stay for surgery #3). I thought for sure that was the direction that we were heading.
Much to my surprise, the hip x-ray looked perfect! Bennett's hips were healing beautifully and I stood there utterly flabbergasted. I then asked the NP to do a thorough exam to see if she could figure out what was wrong....when looking at his legs she noticed swelling around his left knee and sent us down for a second x-ray.
Mystery solved! Hair-line fracture in his left femur, right above his left knee. We were then told that secondary fractures are very common for kids who have had very little activity over long periods of time...basically he had very brittle bones, bless his little angel heart.
But we did get some good news, finally! We did not need a cast- we could just keep the left leg in a straight stabilizer for 2-4 weeks (so it wouldn't bend and so that total healing could take place).
We are currently nearing the end of week 2 post fracture, and our boy has his smiles back...we are seeing glimmers of our happy Bennett boy and could not be more grateful! Oh, and by the way- at this point we will NOT be doing any more surgeries ANY time soon. This one, I mean *two* surgeries, were absolutely exhausting and trying in every way imaginable.
Watching your children suffer is one of the most difficult things imaginable as parents. We have seen our boy suffer in such horrific ways, that at times our hearts cannot handle the pain. God is sovereign and we trust him 100% with Bennett's life. There is SO much uncertainty around the future and what all he is going to need to to have the BEST quality of life and most enjoyable LIFE experience. We will surely make mistakes along the way, but our hope is in HIM, the author and perfecter of our faith...JESUS.
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