Preparing for the Unknown
Abigail’s 8th procedure is complete. We returned from Denver on Sunday. It was another whirlwind of a trip. Abigail did extremely well with this procedure as she has with the last 2. It was a relief. Every time she has a procedure done, I worry that this will be the one that she has complications with.
Abigail was in the Operating Room for almost 1 hour and 45 minutes. Since I knew Dr. Yakes would be attempting to inject the malformations in Abigail’s tongue, I was a wreck. Each procedure is so different and there isn’t a set “time” that it will take so it is just a waiting game. This was her longest so far. When Dr. Yakes called me after she was done, I was relieved to hear she did well! I spoke to him briefly and then realized that sometimes not knowing can be easier than knowing what is ahead.
I have always been a planner. It drives me crazy to not know what the schedule is day to day or week to week. I feel secure when I know what is upcoming and what to expect. I am the master of being prepared. I have learned a lot through this journey and have really been forced to be patient. It has been painful. Patience is NOT one of my virtues but I am getting better at it. When Abigail began treatments, I was told from the very beginning that this disease is not predictable and every case is different. These malformations have a mind of their own. No Specialist can tell you how many procedures will be required and what to expect. The only thing I knew for sure was that Abigail’s battle would be lifelong. She will not only go through puberty, pregnancy and menopause with the usual hormone rages, emotions and discomforts that come along with them, she will also have to be monitored closely for Venous Malformation flare ups and rapid growths. Part of her yearly routine even when treatments subside or “stop” will be to have a MRI and if a VM surfaces, more treatments will follow. When Abigail has a bruise appear, we always worry that it is another VM surfacing. It isn’t the same as having a child with little to no health issues. Needless to say, we worry.
So when I spoke with Dr. Yakes I had to ask. I knew that he would not tell me how many treatments she would need because he doesn’t know and I didn’t expect him to tell me that, but I do know that he is the best and has been doing this for a very long time. So I asked him what his best guess would be for how long these treatments would continue for Abigail. I told him my reasons for wanting to know and he completely understood. I simply wanted to know if he believed her treatments would continue beyond a year. He told me that with regular treatments (regular meaning every 4 weeks), she would probably have at least 18 months to 2 years or slightly more left. My heart skipped a beat. 18, 24 or more months of this? Doing quick math in my head I realized that my sweet, happy baby girl may have to endure 28 or more of these treatments. Yes, she does great overall with them, but that number would overwhelm even the toughest warrior. I had to step away for a bit. I stepped out of the waiting room and proceeded to cry for the next 30 minutes. Just enough to get it out and return to my baby’s side before she woke up from anesthesia. That afternoon when we returned to the hotel, Abigail and Daddy napped. I was exhausted and tried to sleep but simply couldn’t. All that I could do was think about doing this several dozen more times. Leaving my family, traveling across the country, heading to the hospital the next day, handing my baby over as she falls asleep unnaturally, comforting her when she awoke, going back to a place that wasn’t home to recover for 36 hours, and then traveling back across the country to return home for all of 3 1/2 weeks before needing to do it all over again. My head was spinning and I couldn’t stop crying on and off. Then I prayed, prayed and prayed some more. I prayed to God to heal my baby and perform a miracle on her.
I am working to process all of this and to accept it. It is never easy to watch your baby suffer and know that you are limited to what you can do to help. I know that we are doing the best we can for Abigail. I am honestly scared. Doing the math on what this will cost without moving to Denver is overwhelming. At $2,000 per trip plus medical expenses, I’m sure you can see why. The thought of moving my family across the country, away from family and friends, is almost unbearable. We have no choice but to do whatever it takes to help our baby. This is another situation where I have to “Let go and let God.” He has brought us this far and I know that He will not let go of us now.