So once again on Friday, August 12th, one week after surgery, we're up and at the hospital by 6am. Since bandage removal was considered a procedure (as opposed to surgery), we were both allowed to be with her till she drifted off to sleep. What really got me that morning was that Kennedy was just as scared and nervous as she is on the day of a major surgery. And it hit me...I finally understood something she had said to me a couple of surgeries ago, something I didn't want to push at the time. This sweet child isn't nervous about surgery per se. Or even the pain she'll be in after. She's afraid of not waking up.
They say that the drugs used during surgery and to keep patients sedated are memory blockers. I've always doubted this. When Kennedy was five and had to be on life support for nine days, she often came barreling out of sedation bolting upright in her bed. You can't even begin to imagine the amount of sedation drugs necessary to keep a child under. They assured us every time she climbed her way out that it was something she wouldn't remember, that she would have no memories whatsoever. But for more than a year after that horrific month, she would cry out in her sleep saying "Let me wake up! I wanna wake up!" So yeah, she may not have memories of what was going on around her, and she may not remember any of that June, but she definitely had her own nightmares buried in there. Nightmares that still surface when she is about to be put to sleep.
Anywho, back to August 12th. Ryan and I waited out in the waiting room and were joined by Dr. Marcus a short time later. He said that for the most part things looked good, but...there was a black area that he didn't like. The skin graft seemed to not have taken and we needed to watch it closely and were possibly looking at another skin graft. He hugged me, made an appointment for us to come back in on Monday, and we went back home.
We didn't tell Kennedy but she's perceptive and I think she knew it wasn't good news. Instead of sitting at home and sulking, we headed off to the beach for the day. The beach is my sanctuary, so it was exactly where I needed to be that day.
On Monday, Dr. Marcus unwrapped her head again and said that the black spot actually looked better. Looking at it, if this was better then I can't even imagine what it looked like when he unwrapped it a few days ago. Yikes. Since it seemed to heal some on its own, he decided to see what would happen if we gave it a few more days. So back we went on Thursday. And at that point, he said the words we didn't want to hear. There had been no improvement and in order to save it, he was going to have to do another skin graft. So surgery was scheduled for Monday, August 22nd. Surgery #13.
What I can't explain in words is how we all felt at this point. Kennedy started crying first. Followed by mom. Followed by me. I mean, when does this kid get a freakin' break? Why is life so unfair to her? People often say that it is harder for parents to watch their children go through tragedy than it is for the actual child. I can't say whether that is true or not, I'm not Kennedy and I don't know how it feels to be in her shoes. But I can tell you that it is damn hard to be her parent and watch her go through this journey. She didn't ask to be born, she didn't sign up for this life. She doesn't understand how cruel the world can be or why and that her mom only makes these decisions with her best interest in mind. And no matter what you say to convince me otherwise, she is a kid. How could she possibly understand why life is so unfair sometimes?
Sometimes all you can do is cry. Poor Dr. Marcus and his staff. They have literally seen me cry more than my best friends. I know by this point he must dread having me in his office! I'm pretty sure they restock the exam rooms with tissues on the days we're scheduled to be there.
And so on August 22nd, we're up and at the hospital by 6am. At this point, I've done this three times in the last two and half weeks and I'm over it. As is Kennedy. But sometimes you direct where the journey goes and sometimes the journey directs you where to go. We had no choice, there was no backing out at this point. So, full speed ahead Captain.
Some people think the number 13 is bad luck. I decided to join the other camp...that 13 is lucky. Because at this point, we couldn't possibly take more bad news. So I chose to believe that this Lucky 13 surgery was an omen...it was going to be our break. Surgery went well. He was able to take the skin graft from her head instead of having to move to her thigh or bottom. The head is much, much less painful than other graft sites. Of course, it also meant a loss of a lot of hair. Good thing she has a lot! Adding even more to my omen was that for the first time ever, Kennedy woke up from anesthesia with no tears. She was peaceful. That had to be a good sign, right? I've told you what recovery usually means for Kennedy.
We stayed overnight just to be cautious and headed back home on Tuesday. This time, he forewent the huge bandage and placed a special ear cup on her ear with a strap that went under her chin. I'd like to say it was more pleasant that the large q'tip. But I can't lie on Kennedy's behalf. And so we were on our own till Thursday the 25th, when he would take his first look at the new skin graft. Oh, how we love the waiting game! And let me just add that yes, August 25th is the first day of school in the state of North Carolina. And this meant that my baby girl was missing the first day of fourth grade. And as much as she tried to say she didn't care, she takes after her dad and can't lie well.
Sitting in the clinic on Thursday, hearing the word PINK (not black!) was the break we were looking for. I've never liked the color pink until that August day. The new skin graft was taking and the ear was looking good. We were given all the supplies we needed for twice daily bandage changes and sent on our way for a whole week this time! And Kennedy was given the clearance to go back to school on Friday, which meant she only missed one day.
Lucky 13 indeed, finally the break that Kennedy deserved. And although we weren't quite ready to celebrate, we did relax a little. For a whole four days...
(NEXT BLOG: A Ten Day Ride on the Roller Coaster of Hell)
Saturday, November 5, 2011
Tuesday, November 1, 2011
Take Two!
Preface: I'm not sure where this blog will go, I start writing and I write from my heart wherever that may take me. This was a very long, painful, raw ordeal and it might end up spanning several posts.
You'll remember where we left off: an infection ate all the implanted rib cartilage, ate a hole through her ear. I literally hit rock bottom sitting in the doctor's office. Kennedy had an emotional time with it all. Take two of ear reconstruction meant surgery #12 for my baby girl. Nine years old with twelve surgeries. That is hard to even fathom. And unfair beyond belief.
But when at first you don't succeed, try try again. After several months to think things through, to recover from the first horror that was ear reconstruction, we scheduled surgery to try again. Kennedy's doctor was worried about her missing so much school again, so we scheduled for August 5th. This would allow her to enjoy her summer (and enjoy she did...a week at Nana and Pappy's in WV, a weekend at Biltmore, a week at Victory Junction Gang Camp, a week at the beach, a week with her cousin visiting, another week at the beach, topped off with a trip to Niagara Falls with Gram and Papa, not to mention a new in-ground pool in her back yard...what a boring life this child leads!) and still have several weeks to recover before going back to school.
I don't really know how I felt going into this one. Better than I felt about the last attempt. I still can't say that I felt 100% sure in the decision. But then how can you when you are deciding what your child's face should look like. Above all else, I have faith in Kennedy's doctors. I have to...this is as clear to me as it is clear to the person on my right to have faith in God and to the person on my left to have faith that the sun will come out tomorrow. Too many times I have been been required to put my daughter's life in the hands of a person who holds a medical degree. I couldn't do that if I didn't have complete and utter faith in them. And if he was willing to try again, then so were we. Our end goal has always been an ear and he was willing to do what he could to get us there.
And so we met again on the morning of August 5th. Kennedy was quiet and reserved, as usual on surgery day. Dr. Marcus was ready to roll. I walked Kennedy back and watched her be put to sleep and kissed the tear that leaked out of her eye at the last minute. And then I joined Ryan, Katie, my parents, Ryan's mom, and Pam in the waiting room. All wearing our Team Kennedy shirts. All ready to sit through the agonizing 6+ hours of surgery. Again.
If you've never had to wait while you're child is in surgery, I hope you never do. But if you have, then you know the torture that this process is. From the time you leave them until the time they call you to let you know that surgery has started, is a nightmare for me. This is the time they are prepping your child and placing them on a ventilator. Intubating my child is not an easy task and runs numerous risks. So until I have word that she has been intubated, I can't even breathe. The longer the clock ticks on without word, the more I start to worry that something went wrong. Then comes waiting hour by hour, perking up to listen each time the phone rings to see if it is your hourly update. Then taking a sigh of relief as you hear "still in surgery, all is okay." And this goes on and on and on, until finally you're called to a consult room to speak with the doctor after surgery.
Waiting in this consult room is a nerve-wracking experience. At this point, you don't yet know whether surgery went well or not, and you're child is not yet off the ventilator (and again, my child isn't an easy one to pull off either). And you're sitting there waiting, and waiting, and waiting. And after waiting for what seemed like an eternity, Dr. Marcus finally appeared. And although he was very positive, he was also more guarded than usual. Surgery went well and that was the bottom line. I walked out of the consult room not with a sense of doom, but also not with a sense of peace. I walked out only hoping that this would go better than the first take. I mean, how could it be any worse?
It can often take a long time between the end of surgery and being called into the recovery room. With Kennedy, we are usually called faster than most parents so that we can restore her gift of hearing. They can't figure out what the problem is if she can't hear them. The downside of this is that they usually don't have the pain controlled yet, and the wake-out-of-anesthesia effects are still very visible. I've told you before, I hate the recovery room process. And this time, it was worse. She was in SO much pain. And she was filled with so much "gunk." Gunk, you say? Let me explain. For years, Kennedy has dealt with thick throat secretions (think post-nasal drip x 100 x every single minute of her life). Her allergist, another of our angels, has this under control for the most part these days. But when she's intubated, very thick secretions are pulled from every nook and cranny and it is an awful side effect to surgery. Crying only increases the gunk factor. In the ideal world, she would cough all of this gunk out. But after having her chest cut open and rib cartilage removed, coughing is way too painful. The scary part is we know what this gunk can do. If not taken care of, it will end with a collapsed lung. Eventually after many pain drugs, suction wands, and Benadryl, Kennedy is cleared to head up to her room.
Thankfully, Dr. Marcus sent us to a regular room instead of the ICU. It took awhile for Kennedy to settle down this time, and that was a little unsettling to me. Whereas recovery is an awful process, she is usually calm by the time we leave. But it took her some time this time around, and a lot of pain meds. And let me just say that this is an issue where Kennedy and I butt heads these days. I know what it is like for her to get behind on pain meds. It is not pretty. So I push pain meds for the first 48 hours, till she can better judge her pain and make her own decision about meds. She knows the side effects of these pain meds (which are also not pretty) and tries to limit what she has to take. The more we go through this journey, the more this becomes a fight between us. I think I'm losing...
Our hospital stay was somewhat uneventful, I think. With all that happened after that first surgery, I don't remember all the details of the earlier days. Once again Kennedy had the huge q-tip bandage on her head. She quickly weaned herself from the pain meds. We were home by Monday, all hoping that this was Kennedy's lucky break. Life was returning to as normal as possible.
An appointment was scheduled for that Friday, August 12th, to remove the large bandage, this time in the OR with Kennedy asleep. That way, Dr. Marcus could really examine and really clean up her ear. So needless to say, the waiting game was on...again.
(NEXT BLOG: Lucky 13)
You'll remember where we left off: an infection ate all the implanted rib cartilage, ate a hole through her ear. I literally hit rock bottom sitting in the doctor's office. Kennedy had an emotional time with it all. Take two of ear reconstruction meant surgery #12 for my baby girl. Nine years old with twelve surgeries. That is hard to even fathom. And unfair beyond belief.
But when at first you don't succeed, try try again. After several months to think things through, to recover from the first horror that was ear reconstruction, we scheduled surgery to try again. Kennedy's doctor was worried about her missing so much school again, so we scheduled for August 5th. This would allow her to enjoy her summer (and enjoy she did...a week at Nana and Pappy's in WV, a weekend at Biltmore, a week at Victory Junction Gang Camp, a week at the beach, a week with her cousin visiting, another week at the beach, topped off with a trip to Niagara Falls with Gram and Papa, not to mention a new in-ground pool in her back yard...what a boring life this child leads!) and still have several weeks to recover before going back to school.
I don't really know how I felt going into this one. Better than I felt about the last attempt. I still can't say that I felt 100% sure in the decision. But then how can you when you are deciding what your child's face should look like. Above all else, I have faith in Kennedy's doctors. I have to...this is as clear to me as it is clear to the person on my right to have faith in God and to the person on my left to have faith that the sun will come out tomorrow. Too many times I have been been required to put my daughter's life in the hands of a person who holds a medical degree. I couldn't do that if I didn't have complete and utter faith in them. And if he was willing to try again, then so were we. Our end goal has always been an ear and he was willing to do what he could to get us there.
And so we met again on the morning of August 5th. Kennedy was quiet and reserved, as usual on surgery day. Dr. Marcus was ready to roll. I walked Kennedy back and watched her be put to sleep and kissed the tear that leaked out of her eye at the last minute. And then I joined Ryan, Katie, my parents, Ryan's mom, and Pam in the waiting room. All wearing our Team Kennedy shirts. All ready to sit through the agonizing 6+ hours of surgery. Again.
If you've never had to wait while you're child is in surgery, I hope you never do. But if you have, then you know the torture that this process is. From the time you leave them until the time they call you to let you know that surgery has started, is a nightmare for me. This is the time they are prepping your child and placing them on a ventilator. Intubating my child is not an easy task and runs numerous risks. So until I have word that she has been intubated, I can't even breathe. The longer the clock ticks on without word, the more I start to worry that something went wrong. Then comes waiting hour by hour, perking up to listen each time the phone rings to see if it is your hourly update. Then taking a sigh of relief as you hear "still in surgery, all is okay." And this goes on and on and on, until finally you're called to a consult room to speak with the doctor after surgery.
Waiting in this consult room is a nerve-wracking experience. At this point, you don't yet know whether surgery went well or not, and you're child is not yet off the ventilator (and again, my child isn't an easy one to pull off either). And you're sitting there waiting, and waiting, and waiting. And after waiting for what seemed like an eternity, Dr. Marcus finally appeared. And although he was very positive, he was also more guarded than usual. Surgery went well and that was the bottom line. I walked out of the consult room not with a sense of doom, but also not with a sense of peace. I walked out only hoping that this would go better than the first take. I mean, how could it be any worse?
It can often take a long time between the end of surgery and being called into the recovery room. With Kennedy, we are usually called faster than most parents so that we can restore her gift of hearing. They can't figure out what the problem is if she can't hear them. The downside of this is that they usually don't have the pain controlled yet, and the wake-out-of-anesthesia effects are still very visible. I've told you before, I hate the recovery room process. And this time, it was worse. She was in SO much pain. And she was filled with so much "gunk." Gunk, you say? Let me explain. For years, Kennedy has dealt with thick throat secretions (think post-nasal drip x 100 x every single minute of her life). Her allergist, another of our angels, has this under control for the most part these days. But when she's intubated, very thick secretions are pulled from every nook and cranny and it is an awful side effect to surgery. Crying only increases the gunk factor. In the ideal world, she would cough all of this gunk out. But after having her chest cut open and rib cartilage removed, coughing is way too painful. The scary part is we know what this gunk can do. If not taken care of, it will end with a collapsed lung. Eventually after many pain drugs, suction wands, and Benadryl, Kennedy is cleared to head up to her room.
Thankfully, Dr. Marcus sent us to a regular room instead of the ICU. It took awhile for Kennedy to settle down this time, and that was a little unsettling to me. Whereas recovery is an awful process, she is usually calm by the time we leave. But it took her some time this time around, and a lot of pain meds. And let me just say that this is an issue where Kennedy and I butt heads these days. I know what it is like for her to get behind on pain meds. It is not pretty. So I push pain meds for the first 48 hours, till she can better judge her pain and make her own decision about meds. She knows the side effects of these pain meds (which are also not pretty) and tries to limit what she has to take. The more we go through this journey, the more this becomes a fight between us. I think I'm losing...
Our hospital stay was somewhat uneventful, I think. With all that happened after that first surgery, I don't remember all the details of the earlier days. Once again Kennedy had the huge q-tip bandage on her head. She quickly weaned herself from the pain meds. We were home by Monday, all hoping that this was Kennedy's lucky break. Life was returning to as normal as possible.
An appointment was scheduled for that Friday, August 12th, to remove the large bandage, this time in the OR with Kennedy asleep. That way, Dr. Marcus could really examine and really clean up her ear. So needless to say, the waiting game was on...again.
(NEXT BLOG: Lucky 13)
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