Pre Surgery
After agreeing to change our surgery date, Jenson got sick. She woke up in the middle of the night coughing like crazy. Croup had been going around daycare. We decided to keep her home on Friday, let Emerson go to daycare and after daycare Emerson spent the entire weekend at Grams and Pops to prevent her from getting sick. I was in communication with Shriner's throughout the weekend and eventually decided it would be safe to continue with surgery.
Craig had been going back and forth to hangout with Emerson, but I hadn't seen Emerson since Friday morning. Jenson had visited the urgent care Saturday and was being treated and feeling better. After thinking all weekend that they would cancel it and Jenson being clingy and needing extra attention all weekend, nothing seemed ready. Sunday was a mad rush of disinfecting the house, making substitute plans, laundry, and packing.
Day 1
At 2 am I took a loaded car with Addison and Jenson to Mom and Dad's to drop the girls off and pick up Emerson and Craig then, we headed to St. Louis. Emerson was given some special presents as soon as we got registered and spent the whole check-in time coloring with her new smelly markers. She also picked a Halloween costume.
She was checked over by everyone and Dr. Luhmann stopped in to say high. There was a small delay with surgery time. When they were ready, Craig walked her back and they gave her oral anesthesia (we call this a breathing treatment). She had picked cotton candy flavor. This was about 8:15. They start with IVs, a catheter and put some type of neurological wires on each limb (since they are working near her spinal chord).
As soon as they took her back for surgery we went to the car to grab some things and rode the elevator back up with the special trunks that held the Magec rod that they were about to put into our daughter. Before this we had signed the paper allowing the Magec guy to be in room during surgery, to advise the doctor. This was the strangest feeling! There it was, this amazing technology that was going to change our daughter's future.
They called to let us know actual surgery had started at 9:05. We waited, and waited. Dr. Luhmann had said his actual part was about an hour and half. At 11:10 they checked in saying he was about done and they would start stitching her up. Dr. Luhmann came out to talk to us about 11:40.
He was happy with the results. He wasn't able to get the longer rod placed because she is just so small, but the shorter rod will last a couple years. He said it did take longer because he had to rearrange some things. I think because of how severe her curve is, it was difficult to find a good place to anchor the rods (that is my interpretation). The top cut on her back had to be longer than anticipated because of this. He also said unfortunately she will have a shoulder tilt because of the placement and top curve. The rods are improving the bottom curve and we will address the top curve later. The shoulder tilt will not be permanent and will not effect anything with her growth. The x-ray they take in the surgery room is not a good one to measure her angle, but there was correction and we will do a standing x-ray before we leave for exact numbers.
Sometime after noon we were allowed to go see her. She had already rolled over on her side and complained that it was "ouchy." She was in and out trying to talk and answering yes and no questions. She had a temperature that fluctuated and caused some concern but the doctors decided it wasn't a big deal and it eventually went away.
Since she was mostly sleeping, my parents had driven up to help us and they came in while Craig and I grabbed something to eat. She acknowledged them and told them that she got her Magec rod.
They gradually took off most of the chords and she was moved to a patient room. She did a lot of complaining about pain and resting for the rest of the day. Respiratory came every 4 hours to have her do breathing exercises. One of the biggest concerns, especially with her history of it, is pneumonia. She did an amazing job following their directions. They also come frequently to have her move her toes, feet, hands, fingers, listen to her, check her back, and have her follow a light with her eyes. She follows all of these directions like a champ.
She is on some pretty strong pain medication. She sang the months of the year in her sleep, woke up and wanted Daddy so she could tell him that a little girl was being mean to her, and told me her tongue was moving very fast when in fact it wasn't moving. It was a little difficult to maintain no pain but also no nausea. She thought she was going to get sick once, but so far she hasn't. I hope we can avoid that because it would be painful.
We tried to watch some tv, ate almost a whole bag of Teddy Grahams, and drank a little Gatorade. She asked to move from side to side most the day and evening and kept putting her right arm behind her while laying on her right side.
We were given a parent room and since I hadn't sleep yet, I went to lay down and Craig stayed with her through the morning. They started switching her to oral meds instead of IV meds and took her blood to check everything.
Day 2
Tuesday morning we started by getting some pain medicine (she wasn't happy about taking the medicine that taste bad but wanted it for the pain), they took her catheter out and sat her up to put a rob on. She chose the Chewbaca robe because it was kind of like a bear. She did not like sitting up and wanted to rest after that. Then she ate some toast with strawberry jelly and drank some Sierra Mist and had a sucker that was promised if she took the medicine.
About an hour later, she didn't have any back pain, so it was time to get her up for the first time. First we sat up, then she moved to the side of the bed and then stood on the box, stepped down and walked to the elevator. There was lots of screaming and tears involved but I was so proud of her. I know she is in pain but I think some of the screaming is from being scared to move because she thinks it will cause pain. They said that the more she moves the better she will feel.
She walked all the way to the elevator and then got to take a ride in a wheelchair to the playroom. She complained most of the time but we were able to distract her with painting for a little bit. The total time of her being out of bed was an hour and 15 minutes. Afterwards she was exhausted and napped. I also asked about some muscle relaxer based on some experience from families in our support group and they got her some.
Before lunch, she woke up for her breathing exercises, and assessments and told a nurse, "Stop touching me, you're being mean!" and "Don't talk to me." Her right side does sound a little raspy and they are watching it closely. We are getting orders for them to give her the normal breathing treatments that she gets at home to prevent asthma and pneumonia and are hoping that doesn't become a problem.
At one o'clock Em became really uncomfortable. It was time for her pain medication but she has always been terrible at taking medicine. We had to get Daddy because she wouldn't let anyone else give it to her. From 1 to about 3:15 she was mad at all the nurses and staff. The physical therapist came in and tried to work with her legs and roll her over to her other side. She did her breathing exercises but wouldn't cough. Then later she started coughing and almost threw up. She continues to tell the nurse to not touch her and that she isn't talking to her. She isn't eating much either.
At about 4 she got up to use the bathroom and went for a walk. She walked all the way to the elevator and down the hall to the recreation room this time. Then she sat in he wheelchair and did I Spy books before we traveled outside for a little walk and fresh air. This time there wasn't as much screaming but she did complain that it hurt. When we got back she ate some pizza, took her pain meds, did breathing exercises and treatment, was invited to a hallway trick or treat event, video chatted with Meelah and is currently watching Beauty and the Beast while laying in the bed.
Dr. Luhmann visited and said that she should be in some pain because he had made a good amount of correction to her little body. He also got a couple good smiles out of Emerson. She will continue to be a finicky eater for a little bit, because surgery changes your taste buds a little, but should go back to eating well soon. He is more concerned with her drinking enough. In order to go home, we have to be using the restroom okay and be in control of the pain. Apparently today is the worse day and it will get much better starting tomorrow. We will see him in 6 weeks for post operation appointment and our first lengthening will be in 3 months.
Thank you all for your prayers, gifts, green, and concern! We are happy to be past the surgery and praying or a quick recovery.
After agreeing to change our surgery date, Jenson got sick. She woke up in the middle of the night coughing like crazy. Croup had been going around daycare. We decided to keep her home on Friday, let Emerson go to daycare and after daycare Emerson spent the entire weekend at Grams and Pops to prevent her from getting sick. I was in communication with Shriner's throughout the weekend and eventually decided it would be safe to continue with surgery.
Craig had been going back and forth to hangout with Emerson, but I hadn't seen Emerson since Friday morning. Jenson had visited the urgent care Saturday and was being treated and feeling better. After thinking all weekend that they would cancel it and Jenson being clingy and needing extra attention all weekend, nothing seemed ready. Sunday was a mad rush of disinfecting the house, making substitute plans, laundry, and packing.
Day 1
At 2 am I took a loaded car with Addison and Jenson to Mom and Dad's to drop the girls off and pick up Emerson and Craig then, we headed to St. Louis. Emerson was given some special presents as soon as we got registered and spent the whole check-in time coloring with her new smelly markers. She also picked a Halloween costume.
She was checked over by everyone and Dr. Luhmann stopped in to say high. There was a small delay with surgery time. When they were ready, Craig walked her back and they gave her oral anesthesia (we call this a breathing treatment). She had picked cotton candy flavor. This was about 8:15. They start with IVs, a catheter and put some type of neurological wires on each limb (since they are working near her spinal chord).
As soon as they took her back for surgery we went to the car to grab some things and rode the elevator back up with the special trunks that held the Magec rod that they were about to put into our daughter. Before this we had signed the paper allowing the Magec guy to be in room during surgery, to advise the doctor. This was the strangest feeling! There it was, this amazing technology that was going to change our daughter's future.
They called to let us know actual surgery had started at 9:05. We waited, and waited. Dr. Luhmann had said his actual part was about an hour and half. At 11:10 they checked in saying he was about done and they would start stitching her up. Dr. Luhmann came out to talk to us about 11:40.
He was happy with the results. He wasn't able to get the longer rod placed because she is just so small, but the shorter rod will last a couple years. He said it did take longer because he had to rearrange some things. I think because of how severe her curve is, it was difficult to find a good place to anchor the rods (that is my interpretation). The top cut on her back had to be longer than anticipated because of this. He also said unfortunately she will have a shoulder tilt because of the placement and top curve. The rods are improving the bottom curve and we will address the top curve later. The shoulder tilt will not be permanent and will not effect anything with her growth. The x-ray they take in the surgery room is not a good one to measure her angle, but there was correction and we will do a standing x-ray before we leave for exact numbers.
Sometime after noon we were allowed to go see her. She had already rolled over on her side and complained that it was "ouchy." She was in and out trying to talk and answering yes and no questions. She had a temperature that fluctuated and caused some concern but the doctors decided it wasn't a big deal and it eventually went away.
Since she was mostly sleeping, my parents had driven up to help us and they came in while Craig and I grabbed something to eat. She acknowledged them and told them that she got her Magec rod.
They gradually took off most of the chords and she was moved to a patient room. She did a lot of complaining about pain and resting for the rest of the day. Respiratory came every 4 hours to have her do breathing exercises. One of the biggest concerns, especially with her history of it, is pneumonia. She did an amazing job following their directions. They also come frequently to have her move her toes, feet, hands, fingers, listen to her, check her back, and have her follow a light with her eyes. She follows all of these directions like a champ.
She is on some pretty strong pain medication. She sang the months of the year in her sleep, woke up and wanted Daddy so she could tell him that a little girl was being mean to her, and told me her tongue was moving very fast when in fact it wasn't moving. It was a little difficult to maintain no pain but also no nausea. She thought she was going to get sick once, but so far she hasn't. I hope we can avoid that because it would be painful.
We tried to watch some tv, ate almost a whole bag of Teddy Grahams, and drank a little Gatorade. She asked to move from side to side most the day and evening and kept putting her right arm behind her while laying on her right side.
We were given a parent room and since I hadn't sleep yet, I went to lay down and Craig stayed with her through the morning. They started switching her to oral meds instead of IV meds and took her blood to check everything.
Day 2
Tuesday morning we started by getting some pain medicine (she wasn't happy about taking the medicine that taste bad but wanted it for the pain), they took her catheter out and sat her up to put a rob on. She chose the Chewbaca robe because it was kind of like a bear. She did not like sitting up and wanted to rest after that. Then she ate some toast with strawberry jelly and drank some Sierra Mist and had a sucker that was promised if she took the medicine.
About an hour later, she didn't have any back pain, so it was time to get her up for the first time. First we sat up, then she moved to the side of the bed and then stood on the box, stepped down and walked to the elevator. There was lots of screaming and tears involved but I was so proud of her. I know she is in pain but I think some of the screaming is from being scared to move because she thinks it will cause pain. They said that the more she moves the better she will feel.
She walked all the way to the elevator and then got to take a ride in a wheelchair to the playroom. She complained most of the time but we were able to distract her with painting for a little bit. The total time of her being out of bed was an hour and 15 minutes. Afterwards she was exhausted and napped. I also asked about some muscle relaxer based on some experience from families in our support group and they got her some.
At one o'clock Em became really uncomfortable. It was time for her pain medication but she has always been terrible at taking medicine. We had to get Daddy because she wouldn't let anyone else give it to her. From 1 to about 3:15 she was mad at all the nurses and staff. The physical therapist came in and tried to work with her legs and roll her over to her other side. She did her breathing exercises but wouldn't cough. Then later she started coughing and almost threw up. She continues to tell the nurse to not touch her and that she isn't talking to her. She isn't eating much either.
At about 4 she got up to use the bathroom and went for a walk. She walked all the way to the elevator and down the hall to the recreation room this time. Then she sat in he wheelchair and did I Spy books before we traveled outside for a little walk and fresh air. This time there wasn't as much screaming but she did complain that it hurt. When we got back she ate some pizza, took her pain meds, did breathing exercises and treatment, was invited to a hallway trick or treat event, video chatted with Meelah and is currently watching Beauty and the Beast while laying in the bed.
Dr. Luhmann visited and said that she should be in some pain because he had made a good amount of correction to her little body. He also got a couple good smiles out of Emerson. She will continue to be a finicky eater for a little bit, because surgery changes your taste buds a little, but should go back to eating well soon. He is more concerned with her drinking enough. In order to go home, we have to be using the restroom okay and be in control of the pain. Apparently today is the worse day and it will get much better starting tomorrow. We will see him in 6 weeks for post operation appointment and our first lengthening will be in 3 months.
Thank you all for your prayers, gifts, green, and concern! We are happy to be past the surgery and praying or a quick recovery.
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