Real Life Begins

Real Life Begins

Written Dec 3, 2011 8:52am by Amber Gannon Medina

When I was 18 years old I decided to take a volunteer trip to Ghana, West Africa for 4 months. After having many adventures with my amazing friends that I met there, I decided to stop in Europe on my way back home. The plan was to hang out in Switzerland for a week or so with a very good friend from my program and then head home. However, once I was in Zurich and saw how amazing Europe was, I found myself wondering just how amazing Paris was. Or Brussels. Or Amsterdam. So on New Years Eve I got my rail pass and took off on an adventure. By myself. Did I mention I had never been to Europe and that I was 18 years old? Yikes.....

When I look at Mira I see the same pioneer spirit in her. If she is anything like me, it is a combination of stubbornness, independence and a certainty that she is doing all of this the "right" way. Sometimes I wonder if this feistiness helps her or if that donkey-like stubbornness is a hindrance. From the very beginning, it has appeared that Mira believes she knows the best way to go about this business and no doctor or nurse is going to tell her otherwise. This spirit has both impressed and alarmed me, but I believe it is part of what has been getting her through such a difficult journey.

Mira has been chugging along, slowly but surely. A few of the very important things we have been working on are getting her gut used to food, helping her withdraw from drugs and slowing weaning her from the ventilator. These are no easy feats and the slow as molasses baby steps are sometimes very frustrating. 

Mira started on breast milk last week. They give it to her through a tiny tube (NG tube) that goes into her nose and down to her stomach. Feedings began with giving her around 2 cc's an hour-a very small amount by our standards but to a tummy that hasn't had any food, it is a big feat. Everything looked like it was working until the nurses noticed her little belly was getting bigger and bigger and bigger still. I like chunky babies but this looked more like a kid from a 3rd world country with a distended belly. They sucked back what was in her belly and discovered ALL of the milk was sitting undigested in her gut. Feedings were a no go for a few days and we tried to not feel like we were back to square one. 

Since then they have tried a few more times and something always ended up giving them pause. More undigested milk or one slightly scary night-blood in the belly....Last night Mira's nurse told me something not surprising but very alarming. She explained that the drugs Mira has been on will cause the organs that her body deems not as "important" to constrict and this limits the amount of blood flow to those organs. So as I understand it, her intestines and tummy have not been receiving a steady blood flow and have in essence partially died off. Is there any better way to get the Say No To Drugs message out there than this? The very things that help her manage her pain and keep her alive are also destroying parts of her body. There isn't any way to predict whether her body will fully heal from this or if she will experience problems in the future.

Mira has gotten to a point where it is time to slowly wean her off her drugs. And let me tell you- drug withdrawal is not a pretty thing. Her doctors and nurses want to make sure she is not experiencing a lot of discomfort, but there are still signs her body is having a hard time detoxing. There are shakes and twitches and low numbers when her drugs are wearing off. Balancing her drug withdrawal and ventilator weaning along with keeping her comfortable looks like a very messy and difficult job that has no real rules or guidelines. 

However, a silver lining is that since Mira has been weaned off so many sedatives her real personality has truly began to emerge. She is wild, this one! Last night I was sitting with her quietly and she looked very peaceful and dreamy. Out of nowhere and within 5 seconds her eyes shot open (like a Chuckie doll!) and her reign of terror began! She managed to get her arms and legs out from under the heavy bean bags that are meant to weigh her down and she went right for her detested ventilator with a vengeance! Boy, is she going to be a handful! One of Mira's nicknames at the hospital is Beast and I won't deny that can describe her at times. But I thank god she shows such feistiness and outrage and has a firm opinion about what she likes and doesn't like. I believe having this attitude is what has been slowing her progress down, but is also what is keeping her alive and WILL continue to keep her alive and well. Throughout all of this, she has been saying-Listen here people, I don't like YOUR way,THIS is how its going to be done. No wonder she has her doctors stumped!

With all of her beastliness aside (which like I said, I adore), Mira is for the most part very happy and extremely sweet. She likes to wake up and look at her mobile and stare at her surroundings (especially this light that runs the length of her wall). Just like her parents she doesn't mind being on her own, but when people interact with her she makes eye contact. We are told her ability to focus and look at people and her willingness to be touched are all good signs that she is doing well cognitively and emotionally. 

Knowing that Mira is going to pull through is such a relief. However, this period has been tough for me. I've been trying to figure it out, and I think that all those weeks of being in survival mode and not being able to process my emotions because I had to be strong has caught up with me. Combine that with the very sloooow progress Mira is making has me feeling like this might never end. After getting through these first two months of such extreme stress and intense emotions, I realize that many times the hardest part of the whole thing is getting into the rhythm of your "new life". Once the craziness dies down and you are left to slog through the slow process of getting better, a whole new endurance comes into play.

I still come into Mira's hospital room every day and realize how darn lucky I am, how much I love her and how precious life is. Still the gifts come.