Christian Taylor Buchanan

Christian Taylor Buchanan

Thursday, February 23, 2017

Gifts Within The Pain

It's been six years since we welcomed my sweet Christian Taylor into this world.


It was such an exciting and terrifying time.

I remember walking out the front door of my house that morning I was to deliver, and thinking how different my life would be the next time I walked through that door. Having a child is such a huge life changing event anyways, but I really had no idea just what was to come.

We walked into the hospital that morning and went through all the routine things, paperwork, getting the IV hooked up, and all that. The usual nerves were of course, already set in, but there was certainly an unspoken element of fear in the room about what was to come. The unknown can be scary at times.

My parents showed up a little later before time for the C-Section, and we all stayed in the pre-op room. We really did talk casually and joke around. We were all scared, but still were calm enough to just spend time together. Honestly, we all knew that freaking out or sobbing or going wild wasn't going to help anyways. We didn't know what the outcome would be, so we figured we might as well have stayed calm  and kept the atmosphere peaceful for the time being. There would be time to freak out and sob and throw our fits later if it came to that.

A few hours seemed like an eternity, but I was finally taken to the operating room and given my spinal. (SO fun, by the way. Ugh!) Chris was brought in and I just laid there for the next bit while the doctors did their job.

The moments after he was born were nothing but a rush and a blur. There were people everywhere; three anesthesiologists at my head, two surgeons working on me, a plastic surgeon there working on Christian, nurses for me and for Christian, and so many others that I couldn't tell you who they were.

I began to hemorrhage while the doctors were closing me back up, so the already chaotic room really became busy. It was like something you'd see on an episode of a hospital TV show; doctors calling out orders for medications "stat," and tons of other staff racing all over the room. Meanwhile, I was careening my neck to try to get a glimpse of Christian as they assessed him. I couldn't see him. I wasn't allowed to touch him. No one would tell me how he was.

Chris had been over checking on him and came back to me, crying. The mix of medications coursing through my body along with the chaos of the operating room made my head swim. I was sort of just lying there, at the mercy of everyone, waiting to hear about Christian and waiting to be sewn up so I could get up and get to my baby. It was almost as if I was dreaming, like all this couldn't be real. It was like I was in a fog, really. I remember looking down at my cell phone once, trying to text someone to tell them that Christian had been born, and not being able to make out the buttons to type. I was in the middle of a storm, but I was paralyzed and unable to do anything to seek shelter or get out of the downpour. I was being swept wherever the wind blew me, wherever the nurse wheeled me to. I had to wait for all the medications to wear off before I was able to be fully coherent and to myself.

I was powerless.

That is a good way to describe that day. Powerless. Everything that happened was out of my control. I would ask to hold my baby and be told no. I would ask for my pain medication and get a snooty nurse who told me she would get to it when she could. I would ask to be wheeled to see Christian in the NICU 1/3 of a mile away on the other side of the hospital and would be treated like a burden; like I wouldn't have taken myself, dragging my IV and catheter behind me, if I could have. I couldn't even get up out of a bed on my own for a few days. I was powerless.


There was so much pain that day. More than I could ever adequately put into words, but in the midst of that pain came the most overwhelming sense of love that I had ever experienced. In the middle of some of the darkest days of my life shined the brightest of lights. February 18th, 2011 was the day that I began to learn what it truly looks like to have joy in the midst of pain. It was the beginning of a journey where there would be so many days where I was terrified to take another step, but where I compelled to continue moving forward because I knew Christian needed me to. In so many of the photos I have of Christian's first few weeks of life, I was smiling. I was smiling because I was happy. I was holding the most beautiful baby I'd ever seen and he was mine. And if I had to go through all the pain a million more times to get to be Christian's mama, I would do it in a heartbeat. No question about it.

Sometimes, through our deepest pain, God can bring the most beautiful gifts. My gift on February 18th, 2011, was Christian Taylor Buchanan.

Thursday, February 16, 2017

At Their Mercy

Last Friday, I was driving to my next destination on a usual day of errands when my phone rang. I'd already dropped Christian off at therapy with his nurse, ran to kroger to pick up half of what I needed since they were out of the other half, and planned when and where I would go to the next Kroger to get the rest of my groceries. I picked Christian up from therapy and headed to yet another grocery store with the specific things I needed for Christian' s diet. My mind and body were exhausted. It WAS Friday after all and it had been a long week.

Chris had found out earlier in the week that he lost a large bonus at work that we were counting on, the boys had been battling a nagging cold all week, not sleeping well. We were all just over it. 

I answered my phone and it was Christian's nursing company on the other end. To my surprise, they had just received news that Christian's insurance had decided that he didn't need all of the nursing hours that he had, the amount he'd had his entire life. I was floored. My lawyer mind started going a million different places, and questions started falling out of my mouth. The nursing company couldn't tell me much. They were actually surprised that I hadn't heard about it yet. The best part was that Christian's nursing services were going to drop down to almost half of what he was currently getting....in six days. 

So, after several more hours of errands and dragging the boys all over town, we finally got home. I make all of Christian' s food, and he was almost out, so I had gotten groceries to blend him up some more. The nurse and I started on that while I made some phone calls to the insurance company. I got three different folks on the line and got three different responses to my questions, of course.

There just wasn't much anyone could tell me, or much for me to do. So, here I am, starting to go through yet another insurance appeal. An appeal is basically telling the insurance company that you disagree with their decision and why they are wrong.

A very kind friend offered to help me write the appeal since I haven't done it enough to really hone the skill. The craziest part of it all was the time crunch I was on. Christian stood to lose his nursing hours in 6 days. Generally, you have 30 days to file an appeal, and really, I did have 30 days, but if I didn't get an appeal filed and also convince the insurance company that this was important enough that they needed to expedite their decision, then the nursing hours would automatically drop that following Saturday. #MissionImpossible

Nursing care is so important for Christian's well being. Christian qualifies for nursing care because of his feeding tube and only because of his feeding tube. Blessings in disguise, right? You can't sit him down at lunch time and put a pb&j in front of him and expect him to chow down. He can't. Physically and mentally, he can't, and he won't. Feeding aversions and challenges are such a complex thing that I won't even try to explain it all here, Maybe I'll leave that for another blog post, but suffice it to say for now, that you can't "make" Christian eat. You can't "Make" anyone eat. And Christian would literally starve to the detriment of his health and possibly death without his feeding tube at this time. The saying "They'll eat when they're hungry," simply doesn't apply to Christian.

Having a nurse ensures that Christian gets to eat wherever he's at. His teachers at school aren't trained to use a feeding tube. His teacher now, who is so intelligent when it comes to teaching blind kids, has no clue about how to use Christian's feeding tube. So, without someone able to feed Christian at school, well, that leads to the obvious: Christian can't go to school. Christian's nurse accompanying him to school means that Christian gets to go to school like everyone else.

Christian and his button! <3


Christian's nurse also ensures that some of the weight is lifted from my shoulders. I know I speak about Christian as a very typical kid, and in so many ways he is. But the reality is that Christian is medically complex. I had to list out his diagnoses for this appeal, and also had to get a letter from his pediatrician about the nursing care. His pediatrician sent with that a list of the diagnoses on file at that office for Christian. There were about 15 total diagnoses. Each one of those diagnoses takes a a specialist, a plan of care, treatment, and management. For example, Christian's cleft takes a craniofacial plastic surgeon specialist. It requires a plan of how to go about doing each surgery, coordination of care with us and with other specialists that might be involved, like ENT, and what surgeries will be done and which will be avoided. It takes actual surgery, being the treatment, and management, meaning lots of follow up appointments, planning, and just generally keeping the ball moving and Christian's care in that specific area going. Now multiply that by 15.

Christian is, as medical terms go, total care. He can't go to the bathroom without help. He can't feed himself. He can't even begin to bathe himself. He can help dress himself, but can't even realistically pull the appropriate clothes out of a drawer, or button up a shirt. He can't put his own socks on. He can't turn a shirt to the front to slip it on the correct way. He can't go anywhere outside of our home without someone guiding him. He can't walk out our front door without someone holding his hand to help him down the stairs. And the list could go on and on and on about all the things Christian can't do. Christian can do so many things, but self care is one that he simply cannot.

Nursing ensures that Christian always has that assistance that he needs. I can't be everywhere all the time. Chandler needs me sometimes too. I have to work. I have to clean. I have to go to my own doctor's appointments. I can't leave Christian with a sitter, or with a friend, or even with my own parents, for longer than it takes for him to get hungry. He has to eat, and he has to be with someone who knows how to feed him. I mean, I do need to eat and bathe occasionally myself, too. (haha!) But any special needs parent can attest that when you have a total care child, it isn't always practical or doable to actually shower daily or eat regularly. Heck, that's not even doable when you just have small children! #IDidn'tEatDinnerLastNight #TrueStory

The difference is that small children begin to grow and become more independent and so that stage doesn't last for long. But Christian is still total care at almost six years old. His self care skills will get better, lots better, but it will be a long time from now.

Our nurses are in our home to take care of Christian, but they indirectly ensure that I have my sanity and mental and physical health in tact, as well.

Losing nursing care, even part of it, would be a huge blow to our family. Everyone asks how I do what I do, and I always say, "I have nurses!" They shoulder so much of the weight for me that it's incredible. And we have incredible nurses who make sure Christian is always clean, fed, and taken care of. They love him, and it shows in their care for him. We have wonderful nurses who are invested in their relationship with our family and who lift my burden by being able to care for Christian when I can't or need help.

It hurts me so much to constantly have to be fighting someone for what Christian needs. I am so tired of having to prove to someone that Christian needs the things he needs. We aren't faking his disability. I wish we could say he was fine and didn't need nursing care or a feeding tube. But we can't, obviously.

I am so tired of being at the mercy of people whose job it is to sit behind a desk and shuffle through paperwork that paints actual human beings as mere words on paper, taking away their humanity. It's not the person's fault. They are just doing their job. It's the nature of the beast, I suppose. But at the end of the day, after they have cut someone's nursing hours, or coverage of medications, or refused to cover a medical procedure, they go home and their life is the same as before they used that rubber stamp. But for us, that simple rubber stamp that they don't even give a second thought to, it is life changing for people like us us. Losing nursing care would literally be life changing for us. It would rock our world. And yet, here we are, at their mercy, and praying that the paperwork I sent them will convince them that the last bit of paperwork they saw was wrong, and that the human being behind that paperwork is a real human with real needs, who really needs what the paper says he needs.

So, the battle continues with this insurance appeal. The appeal was submitted last week and so now we just wait. They did agree to continue our nursing care hours during the appeal process, called continuation of benefits. i.e. They agreed to allow our nursing benefits to continue while they make a decision on the appeal. If they don't agree to give us an expedited appeal, then the decision can take up to 90 days. If they do agree to one, they will make a decision in 3 days. So, when I know more, you will know more!

Please pray for our family during this appeal process! We are facing a giant, so to speak, and I am praying that we win this appeal. If not, I am not sure what we will do. I know we will figure it out, and I know that God is with us through this whole process. This is a mountain we will climb and get across, and when we get to the top, we will be thankful we climbed it, because otherwise we would miss the breathtaking views.



If you are interested to know how a tube feeding is done, I posted a video demonstrating how Christian gets a tube feeding that you can watch here: https://www.youtube.com/watch?v=h6-bx6OARto&t=10s