When we left the hallway of the surgery pre-op I went straight to the glass windows and sat down. Hubs heads straight out to the lobby. He was on a mission to find those blankets. I sit down and pray.
He calls me after what feels like forever and says he's got them. The first one he found in the trashcan on the corner of the street. I still cannot believe someone picked it up and put it in the trash when it's right in front of a Children's hospital!! It's clearly someone's lovie! He found the other one further towards the Ronald McDonald House. Obviously we dropped them when we were walking there. Probably when I stopped to take pictures. I couldn't believe he even looked in the trash, but he did and he was coming back with them. When he gets back to me I am so grateful and happy, but they immediately went into a bag to be washed later. Thank goodness.
The surgery was incredibly long. I had nothing to do but write and read. And Instagram. I hadn't posted since around June and I didn't have it in me. I had lots of friends write and send such comforting words and bible verses. I clung to them, but I didn't have fear this time. Waiting is uncomfortable. You can never get to relax and your phone is always dying. It's the routine.
I read a book. I laughed until I cried. I read blogs and cried some more. I stayed still a lot. I listened to music. I got up and paced. It was over 12 hours since we left her in pre-op. A lot of thoughts can pass during that kind of idle time. She wasn't in active surgery that whole time- they laid her out and drew a plan for removing the skin and muscle from her back. She had marker all over her including where her main blood flowed in to the flap. She was intubated and relaxed. The waiting room staff was so awesome about keeping us informed... "Don't worry, they are still planning." "They just got her to sleep....", "They are moving on to the arm now" et cetera. She was in great hands. The last time they came to update us they told us she would remain intubated when she's done, and they were finishing putting a cast on her arm. We went back to to post-op only to have just missed her go up directly to the ICU. We took the elevator up to the Ronald McDonald space outside of the ICU. The room closed at 9pm. It was 8:45. The lovely desk clerk showed us around and then a nurse came out to get us. We went back to the room where Marley was surrounded by people and she had a breathing tube taped to her face.
It was hard to see her like that. I knew I couldn't pick her up and I could smell the strong odor of iodine and post surgery air. She was peaceful. When she started to wake up they would immediately say her name and tell her not to move. She stayed like that, sedated for two days. There wasn't much to do, not that I would have done anything anyways. The plastics team came in a couple times each day to check that the skin from her back that had been transplanted to her arm was still pink and turned white when you pressed on it. They checked on her stitches. Her arm was wrapped in a purple cast with a pink hard cast bow wrapped around it. It had an open ditch that allowed you to see the bulk of the transplanted skin. She had an IV in her other arm and they put a brace on it to keep her from bending it. She layed so peaceful for those two days. It was just the three of us and the nurses that had her as their only patient.
I got the chance to talk to the nurses about how we made it out to California. About the long story of our local hospital's change of plans and how Dr. L had posted a picture on Instagram that was a case just like Marley's. We talked a bit about the other case and many of them had been there too. They talked wistfully of how much they loved that department and how crazy it all was what they could do with their cases these days. It was all so gentle and relaxed. The team wanted the heat on as high as it would go. When it's cold the blood vessels constrict and they wanted her to be free flowing. To say it was a hot as a sauna is an understatement. I was a sweaty mess. We all were....
Friday afternoon someone came in from the Ronald McDonald space and said that every week a family is chosen from the ICU floor and provided dinner from a local Italian restaurant. They asked if we would like to be the family this week. It was so overwhelming to think of how much people out there were caring and generous to people they had never met. The Miss explained that the owner had a friend whose child had been very ill and while they couldn't take that away they could provide comfort food. I was beyond words. A few hours later she came and got us, with Marley still sedated, we left our cell phone number and tucked in to one of the eating rooms in the RM space. There was bag full of two entrees of the most glorious chicken breast, penne pasta, cesar salads, bread, and desert for two. It was heavenly. There was a letter included. I read the letter first and for a few minutes we sat in silence feeling the weight and gravity of others that had sat there before us. It was such an intimate moment. And it was delicious.
The surgery was on a Thursday; it was twenty days before Christmas. With Hubs taking time off someone had to get back and make sure the kids were still keeping the routine before winter break. Hubs booked his flight for early Monday morning. I knew we had to wake her up before he left, because I needed her to be herself before I lost my help. Staying strong for 24 hours in the days with no one else was a lot and I admittedly was a bit scared. I had made every arrangement to be gone for almost three weeks, but that was so long to plan for. Late that Saturday she was ready to wake up. The team felt like we had made it out of the stressful woods of rejection and possibilities of blood clots. I knew Marley didn't do well with anesthesia and I knew when she would wake up it was going to be a lot. Blessedly most of it was out of her system in those few days so when they reduced the morphine she woke up and wanted me. I scooped her up as quick as they would allow me and rocked her for days. The ICU rooms were only one patient to a room so we had plenty of privacy. We could also share the space unlike last time so we were in it together with our girl.
By Saturday afternoon we teetered between wanting her to be awake and wanted to keep her full of morphine. When she was dosed she would sleep and it had been days since she had eaten. In our efforts to keep her awake she got really cranky, understandably so. We waited it out and by the time we agreed to give her more morphine one of the nurses had decided she wanted someone else to talk with us. I had laid her back on her bed and saw that her left arm with the IV was hard, red and very swollen. So swollen she couldn't bend her fingers. It was so hard. I honestly started freaking out. I called the nurse back in and she placed a hot pack on there. I was so confused. And down right scared. I was so afraid that something happened to her only working hand that I went probably a little too fast down a rabbit hole of fears. No one seemed concerned. They were calm; we were not. So when the floor resident came in to talk to us about giving her morphine to keep her comfy I stared at her blankly thinking. What the ------. Marley's IV had failed and all I wanted to do to keep her comfy was to give her morphine in that moment and they couldn't. The resident was completely out of the loop. We both listen to her and explained the situation with urgency and she just didn't get it. Hubs says "you can leave the room now". In the meantime Marley is still unconsolable and the nurses are switching the shifts and handing off the cases. Out of the corner of my eye I see the resident back in the doorway with a security guard.
I know what this means. I know it's bad and that we've just gone through the trauma of our daughter dealing with something that frankly is downright hard. Now her only working hand is in duress. And some resident who is not our doctor is standing there smug because she didn't like that he asked her to leave. I think, this is our room. We are thousands of miles away from home, family, everything. And my only other support system is about to be rocked. We are supposed to be allowed to live in this space like it's our home because for now it is. In your space you are allowed to be yourself. Up until this point every experience has been so good, sooooo good. I start to think of how far away we are and then of how we came to this decision. I think of how when we go home, if something goes wrong we are so far away. I can't help second guess our choices and what if it was all a mistake. What if I made the mistake.
They ask him to come down the hall with them to talk. I feel my throat close up and I stand there willing them to help my baby. Amid the chaos we get the same nurse (Z) as the night before and he was truly a blessing. He has no idea what has happened and he says she needs morphine and Tylenol and he goes to get some. Its quiet now besides her wimper. I don't dare leave her side. Alone I am standing there when Hubs comes back to the room. He walks in and says I have to leave. He says the resident said he said the F-bomb. Told her to get the F out. He collects his wallet and walks his ID back out to them. I turn and knee jerk say "are you F---ing me? The guard says Ma'am watch your language. I say directly staring at him "They are just words. They have no meaning beyond what we give them." I can't justify my actions and I know we are in a children's hospital where if I heard someone else say that I would have judged if I am being honest with myself. But, I can't help think 'look at our file', we are so far from home and we are here because we believe. But it doesn't matter. Hubs has to leave. He asks if he could stay until she gets her medicine, make sure she's okay. And he says okay. I'm sure the resident left. I am silent after that. I think I don't want anyone to say I said something that I did not. I think how could she have lied. I said the F bomb, not him. And more importantly that I was still grateful that we were there that I would never have in a million years said it directed to someone, nor would he. Not here. Not in this place.
Our nurse Z comes back in with the oral morphine and Tylenol and she takes it violently down her throat. Security says it's time to go. The swelling has gone down some in her arm. She rests. He looks at me with big eyes and gives us both the biggest kiss goodbye and goes back to the Ronald McDonald House. I stand there holding her hand frozen, silently crying, knowing it's going to be a long night.
He calls me after what feels like forever and says he's got them. The first one he found in the trashcan on the corner of the street. I still cannot believe someone picked it up and put it in the trash when it's right in front of a Children's hospital!! It's clearly someone's lovie! He found the other one further towards the Ronald McDonald House. Obviously we dropped them when we were walking there. Probably when I stopped to take pictures. I couldn't believe he even looked in the trash, but he did and he was coming back with them. When he gets back to me I am so grateful and happy, but they immediately went into a bag to be washed later. Thank goodness.
The surgery was incredibly long. I had nothing to do but write and read. And Instagram. I hadn't posted since around June and I didn't have it in me. I had lots of friends write and send such comforting words and bible verses. I clung to them, but I didn't have fear this time. Waiting is uncomfortable. You can never get to relax and your phone is always dying. It's the routine.
I read a book. I laughed until I cried. I read blogs and cried some more. I stayed still a lot. I listened to music. I got up and paced. It was over 12 hours since we left her in pre-op. A lot of thoughts can pass during that kind of idle time. She wasn't in active surgery that whole time- they laid her out and drew a plan for removing the skin and muscle from her back. She had marker all over her including where her main blood flowed in to the flap. She was intubated and relaxed. The waiting room staff was so awesome about keeping us informed... "Don't worry, they are still planning." "They just got her to sleep....", "They are moving on to the arm now" et cetera. She was in great hands. The last time they came to update us they told us she would remain intubated when she's done, and they were finishing putting a cast on her arm. We went back to to post-op only to have just missed her go up directly to the ICU. We took the elevator up to the Ronald McDonald space outside of the ICU. The room closed at 9pm. It was 8:45. The lovely desk clerk showed us around and then a nurse came out to get us. We went back to the room where Marley was surrounded by people and she had a breathing tube taped to her face.
It was hard to see her like that. I knew I couldn't pick her up and I could smell the strong odor of iodine and post surgery air. She was peaceful. When she started to wake up they would immediately say her name and tell her not to move. She stayed like that, sedated for two days. There wasn't much to do, not that I would have done anything anyways. The plastics team came in a couple times each day to check that the skin from her back that had been transplanted to her arm was still pink and turned white when you pressed on it. They checked on her stitches. Her arm was wrapped in a purple cast with a pink hard cast bow wrapped around it. It had an open ditch that allowed you to see the bulk of the transplanted skin. She had an IV in her other arm and they put a brace on it to keep her from bending it. She layed so peaceful for those two days. It was just the three of us and the nurses that had her as their only patient.
I got the chance to talk to the nurses about how we made it out to California. About the long story of our local hospital's change of plans and how Dr. L had posted a picture on Instagram that was a case just like Marley's. We talked a bit about the other case and many of them had been there too. They talked wistfully of how much they loved that department and how crazy it all was what they could do with their cases these days. It was all so gentle and relaxed. The team wanted the heat on as high as it would go. When it's cold the blood vessels constrict and they wanted her to be free flowing. To say it was a hot as a sauna is an understatement. I was a sweaty mess. We all were....
Friday afternoon someone came in from the Ronald McDonald space and said that every week a family is chosen from the ICU floor and provided dinner from a local Italian restaurant. They asked if we would like to be the family this week. It was so overwhelming to think of how much people out there were caring and generous to people they had never met. The Miss explained that the owner had a friend whose child had been very ill and while they couldn't take that away they could provide comfort food. I was beyond words. A few hours later she came and got us, with Marley still sedated, we left our cell phone number and tucked in to one of the eating rooms in the RM space. There was bag full of two entrees of the most glorious chicken breast, penne pasta, cesar salads, bread, and desert for two. It was heavenly. There was a letter included. I read the letter first and for a few minutes we sat in silence feeling the weight and gravity of others that had sat there before us. It was such an intimate moment. And it was delicious.
The surgery was on a Thursday; it was twenty days before Christmas. With Hubs taking time off someone had to get back and make sure the kids were still keeping the routine before winter break. Hubs booked his flight for early Monday morning. I knew we had to wake her up before he left, because I needed her to be herself before I lost my help. Staying strong for 24 hours in the days with no one else was a lot and I admittedly was a bit scared. I had made every arrangement to be gone for almost three weeks, but that was so long to plan for. Late that Saturday she was ready to wake up. The team felt like we had made it out of the stressful woods of rejection and possibilities of blood clots. I knew Marley didn't do well with anesthesia and I knew when she would wake up it was going to be a lot. Blessedly most of it was out of her system in those few days so when they reduced the morphine she woke up and wanted me. I scooped her up as quick as they would allow me and rocked her for days. The ICU rooms were only one patient to a room so we had plenty of privacy. We could also share the space unlike last time so we were in it together with our girl.
By Saturday afternoon we teetered between wanting her to be awake and wanted to keep her full of morphine. When she was dosed she would sleep and it had been days since she had eaten. In our efforts to keep her awake she got really cranky, understandably so. We waited it out and by the time we agreed to give her more morphine one of the nurses had decided she wanted someone else to talk with us. I had laid her back on her bed and saw that her left arm with the IV was hard, red and very swollen. So swollen she couldn't bend her fingers. It was so hard. I honestly started freaking out. I called the nurse back in and she placed a hot pack on there. I was so confused. And down right scared. I was so afraid that something happened to her only working hand that I went probably a little too fast down a rabbit hole of fears. No one seemed concerned. They were calm; we were not. So when the floor resident came in to talk to us about giving her morphine to keep her comfy I stared at her blankly thinking. What the ------. Marley's IV had failed and all I wanted to do to keep her comfy was to give her morphine in that moment and they couldn't. The resident was completely out of the loop. We both listen to her and explained the situation with urgency and she just didn't get it. Hubs says "you can leave the room now". In the meantime Marley is still unconsolable and the nurses are switching the shifts and handing off the cases. Out of the corner of my eye I see the resident back in the doorway with a security guard.
I know what this means. I know it's bad and that we've just gone through the trauma of our daughter dealing with something that frankly is downright hard. Now her only working hand is in duress. And some resident who is not our doctor is standing there smug because she didn't like that he asked her to leave. I think, this is our room. We are thousands of miles away from home, family, everything. And my only other support system is about to be rocked. We are supposed to be allowed to live in this space like it's our home because for now it is. In your space you are allowed to be yourself. Up until this point every experience has been so good, sooooo good. I start to think of how far away we are and then of how we came to this decision. I think of how when we go home, if something goes wrong we are so far away. I can't help second guess our choices and what if it was all a mistake. What if I made the mistake.
They ask him to come down the hall with them to talk. I feel my throat close up and I stand there willing them to help my baby. Amid the chaos we get the same nurse (Z) as the night before and he was truly a blessing. He has no idea what has happened and he says she needs morphine and Tylenol and he goes to get some. Its quiet now besides her wimper. I don't dare leave her side. Alone I am standing there when Hubs comes back to the room. He walks in and says I have to leave. He says the resident said he said the F-bomb. Told her to get the F out. He collects his wallet and walks his ID back out to them. I turn and knee jerk say "are you F---ing me? The guard says Ma'am watch your language. I say directly staring at him "They are just words. They have no meaning beyond what we give them." I can't justify my actions and I know we are in a children's hospital where if I heard someone else say that I would have judged if I am being honest with myself. But, I can't help think 'look at our file', we are so far from home and we are here because we believe. But it doesn't matter. Hubs has to leave. He asks if he could stay until she gets her medicine, make sure she's okay. And he says okay. I'm sure the resident left. I am silent after that. I think I don't want anyone to say I said something that I did not. I think how could she have lied. I said the F bomb, not him. And more importantly that I was still grateful that we were there that I would never have in a million years said it directed to someone, nor would he. Not here. Not in this place.
Our nurse Z comes back in with the oral morphine and Tylenol and she takes it violently down her throat. Security says it's time to go. The swelling has gone down some in her arm. She rests. He looks at me with big eyes and gives us both the biggest kiss goodbye and goes back to the Ronald McDonald House. I stand there holding her hand frozen, silently crying, knowing it's going to be a long night.
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