Payzlee had her surgery last week. Shaun dropped the kids off with an angel in our ward and went to work while I went up to the hospital. I had to leave at 4am. The drive feels 10x longer when you are going to the hospital for surgery. I found myself wondering why the sun couldn't come up while I was driving. Everyone knows that the cure to a bad night is the sunrise....only my day was just beginning and I longed to have the sun up and not be headed to the hospital. Payzlee had been super sick 2 weeks prior and even days leading up to surgery. She had ear infections and an upper respiratory infection. Everyone got a simple short cold except Payzlee. Because she has the lungs of an aspirator, she got sick in her lungs and stayed sick for a long time. She had to be on 2 different antibiotics prior to surgery. We decided to do ear tubes as well as the bronchoscopy and decided against doing a gi scope as she had just had one done in sept and the doctors didn't feel it would have different results.
The picture is random but I thought I'd break up this post a bit with some pictures as it is hard for me to write and could be hard to read.
So we went back at 6:00 ish and got Payzlee prepped and ready. She was cranky and tired. They took vitals and we got her in her gown. I talked to all of the drs, several nurses, and the anesthesiologist. I signed my life away about a million times and fought off the tears harder than I ever have before. Surgery on your kid is so hard to do. Surgery without your husband there is even harder. I didn't want to be alone. I wanted to have Shaun sitting there holding my hand. But because of various reasons with his job and boss, that just wasn't an option. A text is just not the same as the words said while sitting next to me holding my hand.
Because Payzlee aspirates and does not have healthy lungs, we are at risk every time we put her under; a greater risk than a kid without medical issues going under. They explained all of this to me the day before and the day of surgery. I knew the risks and I didn't want to sign those papers but I knew I had to. When the anesthesiologist came in right before surgery, she asked me if I understood the risks. She talked to me about her being at a greater risk for bad things happening. I understood. She told me that she was at an even greater risk because she had been sick. The only thing is, with her continually getting sick, no time would be a better time. We needed to figure out why she is aspirating now. I knew the risks. I had heard them multiple times. But something about hearing how she could have to be in the ICU intubated and have a machine breathe for her, about 10 min before they took her back to surgery, it hit me like a ton of bricks in my gut. It literally took the breath away from me and I pretty much held my breath until the anesthesiologist left the room. I remember it being so hard to take a full breath for hours after I heard those words.
It was now time for Payzlee to go back to surgery. As long as it is an option, I will always go back with my sweet babies, place them on the operating table, hold their hand, stroke their hair, and kiss them as they fall asleep. Always. I will also always remember the fear in their eyes and the look on their face as they sob in fear. But it is worth that tiny bad moment in case anything ever happens to them; just to say I was the last person they saw!
When I left the operating room, I was taken to a special room off the waiting room. I was told I could get something to eat but had to go back to that room to wait; they needed me there during surgery. It was only me in a room with a couch, a table, and some chairs. It wasn't very big but it felt huge. I went through the motions of eating a small thing for breakfast but I could feel the panic rising and I felt like throwing up. I still couldn't take a full breath of air. I prayed. I didn't know what else to do so I prayed. That's all I could do. My mom really believes those from beyond the veil were there sitting by me but I couldn't feel them. I felt all alone. Finally after an hour or so, part of the team came and talked to me. They told me Payzlee's lungs are still swollen and inflamed but there wasn't infection which is GREAT news. We have to give her an inhaler every day to help with that. She is still aspirating even though we don't give her fluid by mouth anymore. She could be aspirating on her spit though we aren't 100% sure. I know it happens because I see her choke on her spit sometimes and you can tell she has just aspirated. The ENT came in about 20 min later. Tubes were placed fine and he was glad they did them because she had a lot of scar tissue in her ears. Now for the hard part. They found NOTHING wrong with her anatomy. Our next step is to do a brain MRI. A brain MRI will tell us if there is anything wrong inside her head to be causing this. It can be a couple of different things like Chiari Malformation and a few I don't remember. But the doctor told me that for some reason which they don't fully understand, aspirating and neurological issues can go hand in hand and can be quite common. In 2 weeks Payzlee will go under (yes it has to be sedated) for a brain MRI. I feel frustrated. Either we have no idea why she aspirates and will never know why, OR something is wrong in her brain. This just seems SO UNFAIR to me. This beautiful little baby may have something wrong in her brain. Yep it's a lot to take and let sink in. At times like these, I am often reminded by the spirit that it's going to be ok but also to remember that these cute little spirits of ours are on loan to us. They have a mission on this Earth and they will fulfill it in the amount of time it takes to complete that. I am on loan to my family as well. We never know how long any of us will be on this Earth. We can't remember what all our mission entails but I do know how hard each of us fought to come here to this Earth. I am so very grateful for the chance to be Tayla, Mylee, Blake, and Payzlee's mom. Because of our struggles and the simple reminders I get, I try to live each life to it's fullest. I try to rediscover things with my kids and I try to say sorry often. I try to say I love you every chance I can and hug them often. Although the thought of having Payzlees diagnosis be something in her brain terrifies me beyond measure, I am trying to focus on her and the here and now. It will all be ok. I have been holding on tightly to one of my favorite quotes lately.....COME WHAT MAY AND LOVE IT.
The picture is random but I thought I'd break up this post a bit with some pictures as it is hard for me to write and could be hard to read.
So we went back at 6:00 ish and got Payzlee prepped and ready. She was cranky and tired. They took vitals and we got her in her gown. I talked to all of the drs, several nurses, and the anesthesiologist. I signed my life away about a million times and fought off the tears harder than I ever have before. Surgery on your kid is so hard to do. Surgery without your husband there is even harder. I didn't want to be alone. I wanted to have Shaun sitting there holding my hand. But because of various reasons with his job and boss, that just wasn't an option. A text is just not the same as the words said while sitting next to me holding my hand.
Because Payzlee aspirates and does not have healthy lungs, we are at risk every time we put her under; a greater risk than a kid without medical issues going under. They explained all of this to me the day before and the day of surgery. I knew the risks and I didn't want to sign those papers but I knew I had to. When the anesthesiologist came in right before surgery, she asked me if I understood the risks. She talked to me about her being at a greater risk for bad things happening. I understood. She told me that she was at an even greater risk because she had been sick. The only thing is, with her continually getting sick, no time would be a better time. We needed to figure out why she is aspirating now. I knew the risks. I had heard them multiple times. But something about hearing how she could have to be in the ICU intubated and have a machine breathe for her, about 10 min before they took her back to surgery, it hit me like a ton of bricks in my gut. It literally took the breath away from me and I pretty much held my breath until the anesthesiologist left the room. I remember it being so hard to take a full breath for hours after I heard those words.
It was now time for Payzlee to go back to surgery. As long as it is an option, I will always go back with my sweet babies, place them on the operating table, hold their hand, stroke their hair, and kiss them as they fall asleep. Always. I will also always remember the fear in their eyes and the look on their face as they sob in fear. But it is worth that tiny bad moment in case anything ever happens to them; just to say I was the last person they saw!
When I left the operating room, I was taken to a special room off the waiting room. I was told I could get something to eat but had to go back to that room to wait; they needed me there during surgery. It was only me in a room with a couch, a table, and some chairs. It wasn't very big but it felt huge. I went through the motions of eating a small thing for breakfast but I could feel the panic rising and I felt like throwing up. I still couldn't take a full breath of air. I prayed. I didn't know what else to do so I prayed. That's all I could do. My mom really believes those from beyond the veil were there sitting by me but I couldn't feel them. I felt all alone. Finally after an hour or so, part of the team came and talked to me. They told me Payzlee's lungs are still swollen and inflamed but there wasn't infection which is GREAT news. We have to give her an inhaler every day to help with that. She is still aspirating even though we don't give her fluid by mouth anymore. She could be aspirating on her spit though we aren't 100% sure. I know it happens because I see her choke on her spit sometimes and you can tell she has just aspirated. The ENT came in about 20 min later. Tubes were placed fine and he was glad they did them because she had a lot of scar tissue in her ears. Now for the hard part. They found NOTHING wrong with her anatomy. Our next step is to do a brain MRI. A brain MRI will tell us if there is anything wrong inside her head to be causing this. It can be a couple of different things like Chiari Malformation and a few I don't remember. But the doctor told me that for some reason which they don't fully understand, aspirating and neurological issues can go hand in hand and can be quite common. In 2 weeks Payzlee will go under (yes it has to be sedated) for a brain MRI. I feel frustrated. Either we have no idea why she aspirates and will never know why, OR something is wrong in her brain. This just seems SO UNFAIR to me. This beautiful little baby may have something wrong in her brain. Yep it's a lot to take and let sink in. At times like these, I am often reminded by the spirit that it's going to be ok but also to remember that these cute little spirits of ours are on loan to us. They have a mission on this Earth and they will fulfill it in the amount of time it takes to complete that. I am on loan to my family as well. We never know how long any of us will be on this Earth. We can't remember what all our mission entails but I do know how hard each of us fought to come here to this Earth. I am so very grateful for the chance to be Tayla, Mylee, Blake, and Payzlee's mom. Because of our struggles and the simple reminders I get, I try to live each life to it's fullest. I try to rediscover things with my kids and I try to say sorry often. I try to say I love you every chance I can and hug them often. Although the thought of having Payzlees diagnosis be something in her brain terrifies me beyond measure, I am trying to focus on her and the here and now. It will all be ok. I have been holding on tightly to one of my favorite quotes lately.....COME WHAT MAY AND LOVE IT.
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