Sigh of Relief and then…

Hey Everyone,

This is Neil once again.  I apologize for not posting again until now and leaving everyone hanging.  So first things first, April is well.

April’s surgery took almost 2 hours and it was after midnight when the doctor came out and spoke with me.  She told me the surgery went great and she had no issues.  She also said that the surgery was most definitely warranted.  The average cecum is about 4cm in diameter, but April’s on the CT was measuring 9cm. The doctor said that her cecum was quite impressive and even bigger than what the CT showed and it definitely needed to come out because it was getting close to the point of either rupturing or becoming ischemic causing dead bowel.  The doctor said she ran her bowel and everything else looked healthy and normal, and that April had plenty of large bowel left so she should not have any issues going forward with nutrient absorption.

It was about 2am when April was transported from the recovery room back to our room.  She had an NG tube placed (nasogastric tube), which is a tube that goes into her nose and down her throat into her stomach.  It is hooked up to suction and basically just sucks out the gas and any fluids (mainly bile) from the stomach and small intestines.

imageimageIt was a rough night.  Since she couldn’t take any oral meds everything had to be IV, which is okay but that means none of the meds will be long acting.  Originally they wanted her only on some IV Tylenol and the lowest dose of dilaudid that she would have to push a button for every 15 minutes.  I knew this wouldn’t fly since she was on some serious meds for her scoliosis surgery.  So after about an hour of asking for the appropriate level of meds I told the nurses, who were awesome with helping me, call the doctors from spine and colorectal and tell them to discuss with one another what she needs.  They put her on some more appropriate meds and she started to feel better.

At 4am her pain started to get better and she fell asleep so I was able to sleep.  Around 7am the doctors came rounding and I asked them to get the pain management team involved because her pain still was not controlled.  They ordered some IV lidocaine as a continous drip and it did the trick.  After a couple of hours her pain was back down to manageable levels.

Around 2pm our two girls came to visit with April’s mother and it was a welcome distraction.  The girls brushed her hair and massaged her legs and April was feeling better.  During their visit April started to have hallucinations, most likely caused by the IV dilaudid.  The hallucinations were fun ones where she was happy and they were about the girls and the girls thought it was funny.

imageimageimage

After the girls left the nurse was given the okay from the doctor to take out April’s NG tube which was a relief since they are super uncomfortable.  April did not like they way it felt on the way out but she was relieved to be rid of it.  At this point in the night April’s hallucinations became increasingly more vivid, frequent, and they became very dark.  She started having some real bad hallucinations and would come out of it shaking and making all of her muscles in her body spasm and become tight,  which in turn started causing a lot of pain.  April really started “freaking out” but she did know reality from the visions at least, and she decided not to use her button for the pain meds anymore because she couldn’t take all the hallucinations.  I had the pain team paged and a pain management doctor came down to talk with us.  He reduced her dilaudid and gave her some anti anxiety meds to get her to calm down.  After about an hour or so, about 2am this morning, April’s hallucinations were still there but they became a little more manageable and they weren’t of the dark nature.  She finally fell asleep around 4am.

At 6am the spine team came and rounded on April to check in, then about an hour later the colorectal team came to see her.  I was concerned about April’s nourishment and weight, as were they.  She is already a very slender person and she has lost a lot of weight, and the people that truly know April, know that she can eat, and eat a lot. April is just one of those people with a crazy metabolism.  The doctors decided to let her have clear liquids so she could start taking her oral pain meds which are much longer acting and less likely to cause hallucinations.  April took her first round of oral meds and about an hour later it was time for PT.  April sat up, but became instantly naseous.  She ended up throwing up some bile and after sitting for a couple of minutes to compose herself she stood up.  April was even able to take a few side steps with the assistance of the therapist.  She is such a strong person. I don’t know anyone who could, 5 days ago, have a massive 11 hour scoliosis surgery where they lost 7 liters of blood, follow that up by not be able to eat because their bowels are twisted causing an insane amount of distention and pain which led to an emergency bowel resection and then 30 hours later, with no sleep, instead living a perpetual nightmare for hours, be asked to try and stand and walk, and oh ya throw up, then stand up.  The therapist even told April “you don’t have to do this, you can lay back down and we’ll try again later.”  April just looked at her and shook her head and said “I’m fine, I want to get up, I have four kids, I want to get better.”  She is so strong and it was so emotional for me to watch her go through all this shit the past week and still have the strength and the will to get better and get back to her kids.  I love her so much, she truly is a badass.

One more thing, just now we had a delivery of flowers from my Grandma Rae and April’s cousin Ann and family.  Thank you so much, April loved them and said  they were beautiful.

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Here are a couple pics of April’s back and her abdominal incision followed by a couple more pics of April and the girls

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7 thoughts on “Sigh of Relief and then…

  1. What a roller-coaster this has been for you already. It sounds like she’s making good progress. I’m amazed at her stamina and strong will to move forward so quickly. I’m so glad she got to see your girls! I bet that really lifted her spirits. Thank you for the detailed update, Neil! I read these to my husband when you post them and we’re thinking about you both every day.

    Liked by 1 person

  2. Kicking it into touch April! Wow! Well done lady. You and your family must be breathing big sighs. Try and rest, both of you. You’ve been through a crazy time. Glad the girls got to see her. They’ll feel better too. My love and prayers for you all.

    Liked by 1 person

  3. April and Neil, I’ve been following your story even though I’ve never commented. I’ve been holding you all close in my heart and sending you all of my love, healing energy and strength every single day. Good God, you are incredible human beings! The pictures with Laura and Emma are heart-warming and beautiful. Their love for their mom, their ability to find ways to comfort and take care of her, those things are huge. Thank you for sharing those moments with us.

    Neil, we’ve never met but I have seen and heard how good you are for April, how you lift her up and appreciate the entire package that she is. Your strength and character come through in these posts, in your resilience and honesty and in owning the things that scare you. Health struggles are incredibly frightening, vulnerable times. Your medical team sounds like they are both supporting and listening to you, keeping you well informed. That is fantastic. Just keep asking; if she needs pain management, if something doesn’t seem right, if you don’t have something you need, if you’re confused or worried, ask ask ask. The nurses and doctors are on your team, and they always have more information or options or ideas to bring you. They want to see April heal and thrive as much as you do.

    April, you ARE a warrior. You’ve been one for the entire 20+ years I’ve known you. Hang onto those things that fuel your fire and keep you going, like the vision of being back home with your beautiful children and building your new life. We’ve always pushed our bodies as dancers and known the strength that comes from it, the information that pain guides us with, the self-understanding of being our own instrument. Every dancer I’ve ever known has fared better through a recovery than a non-dancer, because of their kinesthetic awareness and trust of their own body. While reading this post I could absolutely picture you standing up from your hospital bed, taking those steps, determined to get better. Every movement or PT exercise that you do is going to clear the path for the next one, each will lay down stepping stones for your recovery.

    In looking at the photos of your torso, I don’t see the incisions. I see a straight, elongated spine, an alignment your 16-year-old self could have only imagined. I see a space between your rib cage and hip bones, breathing room. I see a skeletal frame that is now ready to support and protect your organs so that you can be more fully yourself. I know there is so very, very much on the recovery road ahead of you, so much to manage and negotiate and learn. This is not easy, what you’re doing. But it is brave, and in the end it is a gift to yourself, the gift of health and a chance at a far better life. It will be a different life than before, of course. But it will be yours, with your family and students and community cheering you on.

    And remind yourself, every day, that you will always be a dancer. You will never not be. It is intertwined within your spirit and soul. It is how I’ve seen you speak your clearest. I still picture you dancing the Odette solo in that hot, sweaty studio with the bumpy floors and creaky barres. I see the simultaneous grace, strength, fear, and purpose of that character and of all that you were living through at the time, in your teens. You WILL dance again. It will feel different, it will be different, but it will still be your language. Every individual body has unique limitations, and yet dance is flexible enough to let you modify, push those edges, and find your voice with whatever ability you possess. You will obviously have to think about and approach movements differently, an intense version of what all dancers must do as we age and adapt. But you will also discover things that you didn’t know you could do. The most powerful dancers are not the ones with high extensions or deep backbends; I quickly get tired of watching that. The dancers who draw my eye and truly move me are often over 35: the ones with life, with maturity, with self-knowledge, with the tangible sense that they no longer have anything to prove. They simply have something to say, and they know exactly how they will say it through their bodies. You are painted with courage, with perseverance, with experiences that are shaping you, and those are all going to color your dancing with a power that is beyond imagination. Your strength and focus will inspire your students by the example of what is possible when you want something enough to work for it, consistently, daily, devotedly. Your teaching eye, your ability to share the joy of dance, your love of the work, those will always be yours, too. And your life’s new incarnation will gradually take shape as time goes on.

    For now, know that I love you, I pray for you, I hold all of you in my heart every day as you progress hour by hour, and I’m with you for this journey. Be well, dear April. ❤

    Liked by 1 person

  4. April and Neil, I’ve been following your story even though I’ve never commented. I’ve been holding you all close in my heart and sending you all of my love, healing energy and strength every single day. Good God, you are incredible human beings! The pictures with Laura and Emma are heart-warming and beautiful. Their love for their mom, their ability to find ways to comfort and take care of her, those things are huge. Thank you for sharing those moments with us.

    Neil, we’ve never met but I have seen and heard how good you are for April, how you lift her up and appreciate the entire package that she is. Your strength and character come through in these posts, in your resilience and honesty and in owning the things that scare you. Health struggles are incredibly frightening, vulnerable times. Your medical team sounds like they are both supporting and listening to you, keeping you well informed. That is fantastic. Just keep asking; if she needs pain management, if something doesn’t seem right, if you don’t have something you need, if you’re confused or worried, ask ask ask. The nurses and doctors are on your team, and they always have more information or options or ideas to bring you. They want to see April heal and thrive as much as you do.

    April, you ARE a warrior. You’ve been one for the entire 20+ years I’ve known you. Hang onto those things that fuel your fire and keep you going, like the vision of being back home with your beautiful children and building your new life. We’ve always pushed our bodies as dancers and known the strength that comes from it, the information that pain guides us with, the self-understanding of being our own instrument. Every dancer I’ve ever known has fared better through a recovery than a non-dancer, because of their kinesthetic awareness and trust of their own body. While reading this post I could absolutely picture you standing up from your hospital bed, taking those steps, determined to get better. Every movement or PT exercise that you do is going to clear the path for the next one, each will lay down stepping stones for your recovery.

    In looking at the photos of your torso, I don’t see the incisions. I see a straight, elongated spine, an alignment your 16-year-old self could have only imagined. I see a space between your rib cage and hip bones, breathing room. I see a skeletal frame that is now ready to support and protect your organs so that you can be more fully yourself. I know there is so very, very much on the recovery road ahead of you, so much to manage and negotiate and learn. This is not easy, what you’re doing. But it is brave, and in the end it is a gift to yourself, the gift of health and a chance at a far better life. It will be a different life than before, of course. But it will be yours, with your family and students and community cheering you on.

    And remind yourself, every day, that you will always be a dancer. You will never not be. It is intertwined within your spirit and soul. It is how I’ve seen you speak your clearest. I still picture you dancing the Odette solo in that hot, sweaty studio with the bumpy floors and creaky barres. I see the simultaneous grace, strength, fear, and purpose of that character and of all that you were living through at the time, in your teens. You WILL dance again. It will feel different, it will be different, but it will still be your language. Every individual body has unique limitations, and yet dance is flexible enough to let you modify, push those edges, and find your voice with whatever ability you possess. You will obviously have to think about and approach movements differently, an intense version of what all dancers must do as we age and adapt. But you will also discover things that you didn’t know you could do. The most powerful dancers are not the ones with high extensions or deep backbends; I quickly get tired of watching that. The dancers who draw my eye and truly move me are often over 35: the ones with life, with maturity, with self-knowledge, with the tangible sense that they no longer have anything to prove. They simply have something to say, and they know exactly how they will say it through their bodies. You are painted with courage, with perseverance, with experiences that are shaping you, and those are all going to color your dancing with a power that is beyond imagination. Your strength and focus will inspire your students by the example of what is possible when you want something enough to work for it, consistently, daily, devotedly. Your teaching eye, your ability to share the joy of dance, your love of the work, those will always be yours, too. And your life’s new incarnation will gradually take shape as time goes on.

    For now, know that I love you, I pray for you, I hold all of you in my heart every day as you progress hour by hour, and I’m with you for this journey. Be well, dear April.❤

    Liked by 1 person

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