The scariest part was over, but the hardest part was ahead of us. When we started, it was painful for Faith to walk, but the chemo made it comfortable. Now, we were going to change everything. She asked me a month or so ago if she was going to have to learn to walk all over again after all of this. At the time, my answer was, "you'll need some PT to strengthen your leg, but I don't think you'll ever forget how to walk." During the days after her surgery, I wasn't so sure.
After surgery they moved Faith to the 7th floor, our home away from home. She was flat on her back when I Ieft her side Wednesday night, but she was talking and smiling. She was a groggy version of her old self. When I returned Thursday afternoon, she was sullen and grumpy. She was in pain. Her epidural was doing a marvelous job completely numbing her right leg, but her left leg, the leg we operated on, was only partially numb and it was hurting. Chandler and I, as usual, take turns staying at the hospital. We had both wanted to stay with her the first night, but we can't forget Kady. She needed one of us to be with her, to show her that she was equally important. So, Chandler took the first night. I thought it would be the easiest of all the nights. Faith should have been appropriately narked out and asleep, but it didn't play out that way. She spiked a fever in the middle of the night, 102.6, her blood pressure dropped, her heart rate was elevated, and her pulse-ox was low. The nurses came every 15 minutes to check her vitals, alarms went off throughout the night. She had eaten nothing since Tuesday night. I was at home and oblivious. Poor Chandler had to deal with it all.
Thursday, early afternoon, when I finally got there, the nurse and the physical therapist came in with concerned looks on their faces. Faith was too flat and she needed to sit up some. As they moved her bed, Faith's eyes filled with terror. "Ouch, ouch stop!" They looked at the gauge on the bed; we had made it to 10% and it was lunchtime. I was instructed to get her to 30% by dinner and get her to eat something. Chandler headed home. I looked at my sweet baby girl's face. The face I was used to seeing was replaced by this angry, unhappy face I'd really never seen before. Not even in the beginning. Not even on our worst chemo day. I knew, deep down in my heart, that it was temporary, but I couldn't help but wonder what had we done to our daughter and would she ever truly recover. I did manage to finally get her up to 30%, but doing so made her sort of tip sideways in the bed. Any and every movement taxed her and elicited that same angry face I had witnessed before. "Stop it" she hollered at me. Requests to help her sit up straighter were met with a bitter stare that could be translated with any number of 4 letter words. She still hadn't eaten, so I ordered her food and then had to spoon feed her. I hadn't done that since she was an infant. Then, I made her brush her teeth and wash her face and armpits. Activities that made me feel productive and proactive, but made her even more sullen. Dagger eyes. I guess I could have let it go, but there is something about a clean mouth and face that always makes me feel better and I was hoping that she was the same. Besides, what message would that send her if the basic hygienic tasks that I pester about at home, really more like obsess about, were suddenly unimportant? Bottom line, I couldn't just sit by and do nothing. This was the only part I had any control over. My kid may feel like hell, but I will certainly try to not let her look like it!
Friday morning I got her to eat a little more. I breathed a little lighter. I met with her doctors, including the pain team, and asked them what was the point of this epidural that was only partially working. Having the epidural required a catheter and didn't allow her move out of the bed. The nurses assured me that bed sores only happen to unhealthy, older people or those who have been in bed a really long time. Still, I don't recall the last time I was in bed over 24 hours without so much as turning over and I was really beginning to get concerned. They assured me that having a partially working epidural was still better than no epidural at all, but they supplemented with Morphine. Chandler had picked Kady up for lunch that day and brought her to the hospital to see her sister. Usually, Faith tries to put on a happy face, but she was making no effort. She was snappy and irritable and generally unhappy. Understandable. My heart broke for her, but after being dumped on by her for most of the day, I was ready to go home. It was my night to be with Kady, so rain or no rain, we left. At least the weather was more holiday-like. I finally agreed to put Christmas music on in the car. Kady and I sang along as we crawled home (Phoenix people have no idea how to drive in rain, so even at 6:30, it was bumper to bumper on the freeway). An hour later we arrived home. I opened a bottle of red, Kady got some hot chocolate and we chilled. It was a lovely evening and we, unexpectedly, got to visit with some friends and neighbors. That was just the recharge I needed to get ready for what Saturday had in store.
Kady insisted on coming with me on Saturday. She had many opportunities to do something more fun, and I wish she had taken one of them because she didn't need to see her sister on what would be one of our hardest days. When we arrived, Faith's epidural had been turned off. The nurses were having trouble taking it out, so they had to call the pain doc. They were waiting to take the catheter out until the epidural was out and until the bed-side commode arrived. The waiting was creating a fair amount of anxiety in Faith. Funny how she fretted and protested the idea of an epidural in the first place and now was fretting about losing it! Both tubes were finally removed and we put Faith in clean clothes for the first time since Wednesday. She had friends coming and we wanted to be ready. Their visit was a nice distraction. Faith read magazines with her girlfriends. Chandler and I shared beers we had snuck in with our friends. Adults and kids used the window crayons we had been given by the hospital to decorate Faith's window and we all roared when someone secretly TP'd the bathroom! But then, Faith had the urge to use the commode. That's it, party's over. Our friends graciously left us to our task.
After surgery they moved Faith to the 7th floor, our home away from home. She was flat on her back when I Ieft her side Wednesday night, but she was talking and smiling. She was a groggy version of her old self. When I returned Thursday afternoon, she was sullen and grumpy. She was in pain. Her epidural was doing a marvelous job completely numbing her right leg, but her left leg, the leg we operated on, was only partially numb and it was hurting. Chandler and I, as usual, take turns staying at the hospital. We had both wanted to stay with her the first night, but we can't forget Kady. She needed one of us to be with her, to show her that she was equally important. So, Chandler took the first night. I thought it would be the easiest of all the nights. Faith should have been appropriately narked out and asleep, but it didn't play out that way. She spiked a fever in the middle of the night, 102.6, her blood pressure dropped, her heart rate was elevated, and her pulse-ox was low. The nurses came every 15 minutes to check her vitals, alarms went off throughout the night. She had eaten nothing since Tuesday night. I was at home and oblivious. Poor Chandler had to deal with it all.
Thursday, early afternoon, when I finally got there, the nurse and the physical therapist came in with concerned looks on their faces. Faith was too flat and she needed to sit up some. As they moved her bed, Faith's eyes filled with terror. "Ouch, ouch stop!" They looked at the gauge on the bed; we had made it to 10% and it was lunchtime. I was instructed to get her to 30% by dinner and get her to eat something. Chandler headed home. I looked at my sweet baby girl's face. The face I was used to seeing was replaced by this angry, unhappy face I'd really never seen before. Not even in the beginning. Not even on our worst chemo day. I knew, deep down in my heart, that it was temporary, but I couldn't help but wonder what had we done to our daughter and would she ever truly recover. I did manage to finally get her up to 30%, but doing so made her sort of tip sideways in the bed. Any and every movement taxed her and elicited that same angry face I had witnessed before. "Stop it" she hollered at me. Requests to help her sit up straighter were met with a bitter stare that could be translated with any number of 4 letter words. She still hadn't eaten, so I ordered her food and then had to spoon feed her. I hadn't done that since she was an infant. Then, I made her brush her teeth and wash her face and armpits. Activities that made me feel productive and proactive, but made her even more sullen. Dagger eyes. I guess I could have let it go, but there is something about a clean mouth and face that always makes me feel better and I was hoping that she was the same. Besides, what message would that send her if the basic hygienic tasks that I pester about at home, really more like obsess about, were suddenly unimportant? Bottom line, I couldn't just sit by and do nothing. This was the only part I had any control over. My kid may feel like hell, but I will certainly try to not let her look like it!
Friday morning I got her to eat a little more. I breathed a little lighter. I met with her doctors, including the pain team, and asked them what was the point of this epidural that was only partially working. Having the epidural required a catheter and didn't allow her move out of the bed. The nurses assured me that bed sores only happen to unhealthy, older people or those who have been in bed a really long time. Still, I don't recall the last time I was in bed over 24 hours without so much as turning over and I was really beginning to get concerned. They assured me that having a partially working epidural was still better than no epidural at all, but they supplemented with Morphine. Chandler had picked Kady up for lunch that day and brought her to the hospital to see her sister. Usually, Faith tries to put on a happy face, but she was making no effort. She was snappy and irritable and generally unhappy. Understandable. My heart broke for her, but after being dumped on by her for most of the day, I was ready to go home. It was my night to be with Kady, so rain or no rain, we left. At least the weather was more holiday-like. I finally agreed to put Christmas music on in the car. Kady and I sang along as we crawled home (Phoenix people have no idea how to drive in rain, so even at 6:30, it was bumper to bumper on the freeway). An hour later we arrived home. I opened a bottle of red, Kady got some hot chocolate and we chilled. It was a lovely evening and we, unexpectedly, got to visit with some friends and neighbors. That was just the recharge I needed to get ready for what Saturday had in store.
Kady insisted on coming with me on Saturday. She had many opportunities to do something more fun, and I wish she had taken one of them because she didn't need to see her sister on what would be one of our hardest days. When we arrived, Faith's epidural had been turned off. The nurses were having trouble taking it out, so they had to call the pain doc. They were waiting to take the catheter out until the epidural was out and until the bed-side commode arrived. The waiting was creating a fair amount of anxiety in Faith. Funny how she fretted and protested the idea of an epidural in the first place and now was fretting about losing it! Both tubes were finally removed and we put Faith in clean clothes for the first time since Wednesday. She had friends coming and we wanted to be ready. Their visit was a nice distraction. Faith read magazines with her girlfriends. Chandler and I shared beers we had snuck in with our friends. Adults and kids used the window crayons we had been given by the hospital to decorate Faith's window and we all roared when someone secretly TP'd the bathroom! But then, Faith had the urge to use the commode. That's it, party's over. Our friends graciously left us to our task.
I don't think much could have prepared us for the first time we got her out of bed. By Saturday, after lying essentially motionless for 2 and a half days and after receiving a prosthetic hip and femur replacement, moving Faith was the most nerve-wracking experience I have ever had. The physical therapist had been by the day before to make Faith sit up on the side of the bed, but she wasn't here now. I didn't want to cause her any more pain, but that seemed inevitable. Also, I was afraid that we would damage her new hip. There were so many "hip precautions" in place. She shouldn't turn her foot inward, she shouldn't allow her left leg to cross her midline, and she shouldn't bend her body more than 90 degrees (imagine sitting down on the toilet and you are past 90 degrees). So many things to consider and this is our first time moving her more than by just sitting the bed up! So, we took it one step at a time. Chandler got her to sit up and began turning her body toward the side of the bed. Slowly, very slowly. She tried to help scoot herself closer to the edge. Panic was written all over her face, mine too, I'm sure. Now, to bend her legs so they dangled over the side. I had watched the PT do this, but that was yesterday, with the epidural in. Now the tears had begun. Faith was snapping at her dad and I to stop, take is slow, go easy, but we needed to keep going. She was mean and, I guess, rightfully so. Finally, Chandler wrapped her arms around his neck and the two of them worked together to pick Faith up off of the bed, turn her and then set her down on the commode. Faith had cried so hard after all of that her face looked like she had just come in from a rainstorm. She calmed down a bit and we waited and waited for something to happen. Having had that catheter in for so long made it a little challenging to "go" the first time. We tried the tricks we could think of to help inspire her like running water from the faucet and putting Faith's hand in a cup of warm water, but to no avail. After sitting on that commode for over 20 minutes, Faith's leg began to spasm, so we gave up, put her back in bed and got her a valium. It was Chandler's turn to go home now. He got the first night filled with fevers and blood-pressure issues and I got the first night of moving Faith.
The urge struck again and Faith and I began the 20 minute process to move her 3 feet over to the commode. Sit the bed up, inch the left leg over, scoot to the side of the bed, and then the worst part, bend the legs so her feet touch the floor. The anxiety was making the pain worse, so I started jabbering away at Faith about non-sense topics. As we talked about making
homemade cinnamon rolls Thanksgiving morning, she barely noticed that l had lowered her feet down to the floor. A little smile emerged from her as she realized that our talking had successfully distracted her from her discomfort. We decided that we would jabber away every time. Our cinnamon rolls became elaborate, yummy, gooey, buttery gourmet goodness. Faith and
I had gotten this process pretty well down, but it still involved me lifting her off the bed and moving her to the commode. Not so easy on my back. At least the valium had kicked in. I wished I'd had some valium! By the time my family had stopped in to visit, Faith was officially drunk! She was being silly and slurring her words a bit, AND, she was smiling. Even laughing! It was such a relief.
Sunday morning, the physical therapist, Katie, came in. We told her about our process and she said that it was time for Faith to get herself up out bed without her parents lifting her. Katie showed us how to do it without any nasty protests from Faith. At least my daughter remembered her manners when a stranger was involved! Katie continued and got Faith into her wheelchair and then had her wheel herself out into the hallway. She was smiling! That Sunday morning some Phoenix Firefighters had come to play baseball with the kids in the hallway. Faith had heard all of the commotion and now she could go see for herself. The hallway was filled with firefighters, patients and their parents, doctors and nurses. It was the first time Faith had gotten up and moved around since Wednesday, over 3 days ago, and I was overcome with emotion. I stood in that busy hallway and bawled. A doctor came up to ask if I was ok. Awkward!
The urge struck again and Faith and I began the 20 minute process to move her 3 feet over to the commode. Sit the bed up, inch the left leg over, scoot to the side of the bed, and then the worst part, bend the legs so her feet touch the floor. The anxiety was making the pain worse, so I started jabbering away at Faith about non-sense topics. As we talked about making
homemade cinnamon rolls Thanksgiving morning, she barely noticed that l had lowered her feet down to the floor. A little smile emerged from her as she realized that our talking had successfully distracted her from her discomfort. We decided that we would jabber away every time. Our cinnamon rolls became elaborate, yummy, gooey, buttery gourmet goodness. Faith and
I had gotten this process pretty well down, but it still involved me lifting her off the bed and moving her to the commode. Not so easy on my back. At least the valium had kicked in. I wished I'd had some valium! By the time my family had stopped in to visit, Faith was officially drunk! She was being silly and slurring her words a bit, AND, she was smiling. Even laughing! It was such a relief.
Sunday morning, the physical therapist, Katie, came in. We told her about our process and she said that it was time for Faith to get herself up out bed without her parents lifting her. Katie showed us how to do it without any nasty protests from Faith. At least my daughter remembered her manners when a stranger was involved! Katie continued and got Faith into her wheelchair and then had her wheel herself out into the hallway. She was smiling! That Sunday morning some Phoenix Firefighters had come to play baseball with the kids in the hallway. Faith had heard all of the commotion and now she could go see for herself. The hallway was filled with firefighters, patients and their parents, doctors and nurses. It was the first time Faith had gotten up and moved around since Wednesday, over 3 days ago, and I was overcome with emotion. I stood in that busy hallway and bawled. A doctor came up to ask if I was ok. Awkward!
That was enough for one day. We headed back into the room and got Faith settled. It was Sunday and it was my night to go home. After yesterday's drama, Kady had decided to stay with friends. I picked her up, swooped in on some neighbors dinner and then Kady and I went home to crash. I think we were both sound asleep before 9pm. I had to work late Monday and Chandler was waiting for me at the hospital. Aunt Wendi had flew in from Missouri for Thanksgiving and was hanging out with Chandler and Faith. They texted me the best picture yet. Faith downstairs in the hospital cafeteria eating. Smiling! She was getting better every day with lightening speed.
When I got to the hospital Monday night, I could tell that she was ready to go home. I started asking nurses to help get us out of there. We weren't supposed to go home until Wednesday, but Faith had met all of the requirements for discharge. No fever for 24 hours, no IV pain medication, moving around on her own, going to the bathroom with both respects on her own, and eating and drinking. Check, check, check, check, and check! Done! Get us out of here. Tuesday morning, I got up and showered right away. No need to dilly-dally, we needed to be ready for the green light. The surgeon came in at 7am and gave his blessing, then the general physician. We were just waiting on the oncologist. They would all evaluate Faith, then discuss and decide, but all indicators pointed to an early home-coming. Problem. Faith's blood draw was showing a dramatic drop in red blood cells. What?!? They were having trouble with her port earlier. Sometimes these ports develop scar tissue that allows fluid to flow into her body, but when the flow is reversed, the scar tissue gets sucked into the port inhibiting blood to be drawn out. They would redraw her blood. Same issue with the port and the nurse can only get a fractional sample. Now, it's lunch time and we are still waiting on blood counts. This time they came back worse than before. I was trying to stay calm and be logical about this. Faith looks good, she feels ok, it's, therefore, unlikely that anything other than faulty blood samples is going on here. I told the nurses that we were done with trying the port. Access her veins the old fashioned way. Faith won't be happy, but at least we will know what's going on. We had to wait for a nurse to come who can draw blood directly from a vein. Eventually, we had a whole slew of people in the room, 3 extra nurses, our nurse, and a doctor. We were all trying to figure this out. They got a good sample from Faith's hand and send it off. Results usually come within 15 minutes so we waited. Every time the door opened we practically gave ourselves whiplash to see who it was! Finally, 30 minutes later, a different nurse came in to inform us that our nurse was sick and had left early. She scrambled to get our results, which were completely normal, and gave us our discharge papers. You would have thought the building was on fire how fast we were moving! It had only been six days in the hospital, but it felt like 6 weeks.
Looking back at how scared I was to about the surgery, and how hard those first few days had been seems unreal to me now. It was hard and it was scary and hell, it was and still is a big deal. But it's over. We'll have more surgeries, but I know they will be easier. Just like it's easier taking any road trip the 2nd time. We'll know where the speed traps are, what the terrain looks like, what to pack, and where the best rest stops are. Hopefully, there won't be any unexpected construction, but if there is, we'll just change the station and go with it.
When I got to the hospital Monday night, I could tell that she was ready to go home. I started asking nurses to help get us out of there. We weren't supposed to go home until Wednesday, but Faith had met all of the requirements for discharge. No fever for 24 hours, no IV pain medication, moving around on her own, going to the bathroom with both respects on her own, and eating and drinking. Check, check, check, check, and check! Done! Get us out of here. Tuesday morning, I got up and showered right away. No need to dilly-dally, we needed to be ready for the green light. The surgeon came in at 7am and gave his blessing, then the general physician. We were just waiting on the oncologist. They would all evaluate Faith, then discuss and decide, but all indicators pointed to an early home-coming. Problem. Faith's blood draw was showing a dramatic drop in red blood cells. What?!? They were having trouble with her port earlier. Sometimes these ports develop scar tissue that allows fluid to flow into her body, but when the flow is reversed, the scar tissue gets sucked into the port inhibiting blood to be drawn out. They would redraw her blood. Same issue with the port and the nurse can only get a fractional sample. Now, it's lunch time and we are still waiting on blood counts. This time they came back worse than before. I was trying to stay calm and be logical about this. Faith looks good, she feels ok, it's, therefore, unlikely that anything other than faulty blood samples is going on here. I told the nurses that we were done with trying the port. Access her veins the old fashioned way. Faith won't be happy, but at least we will know what's going on. We had to wait for a nurse to come who can draw blood directly from a vein. Eventually, we had a whole slew of people in the room, 3 extra nurses, our nurse, and a doctor. We were all trying to figure this out. They got a good sample from Faith's hand and send it off. Results usually come within 15 minutes so we waited. Every time the door opened we practically gave ourselves whiplash to see who it was! Finally, 30 minutes later, a different nurse came in to inform us that our nurse was sick and had left early. She scrambled to get our results, which were completely normal, and gave us our discharge papers. You would have thought the building was on fire how fast we were moving! It had only been six days in the hospital, but it felt like 6 weeks.
Looking back at how scared I was to about the surgery, and how hard those first few days had been seems unreal to me now. It was hard and it was scary and hell, it was and still is a big deal. But it's over. We'll have more surgeries, but I know they will be easier. Just like it's easier taking any road trip the 2nd time. We'll know where the speed traps are, what the terrain looks like, what to pack, and where the best rest stops are. Hopefully, there won't be any unexpected construction, but if there is, we'll just change the station and go with it.
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