December 14th 2015
Update on Micah
He had a good night and a good morning. He is on morphine now and is much calmer because of it, blood pressure and heart rhythm are good. Potassium is up, and they have weened him completely off of the epinephrine. They are starting to back down the steroids now and still trying to get fluid off, but he seems to be handling that on his own. Another quiet day ahead for Micah.
Maria is spending the afternoon with Ashley at the museum in Fort Worth. Thank you to Kelly and Jared again. My mother in law is using the opportunity to get a Christmas tree and decorate it so Maria has a tree when she goes “home” tonight. I am so very thankful we moved back to Texas when we did. So much wonderful support.
Thank you everyone for the continued prayers. I know we spend a good deal of time praying. On that note if you have anything you are praying for please let me know, like I said I am praying a lot these days and would be happy to add your prayers to mine.
Happy Feast Day of Our Lady of Guadalupe #TeamMicah
Update on Micah
Good day. He is still shedding fluids and his potassium has been stable. All his other blood gases are were good. He spent most of the day asleep/sedated. The doctor is thinking probably Monday at the earliest for chest closure.
Thank you everyone for your continued thoughts and prayers. I know today hasn’t been much of a report but we are on a long road and boring days are good days right now. Have a good night everyone and we’ll be praying Micah has a good night as well.
Having people who will make the journey to us in the hospital became a vital part of our mental health care routine. Getting to see our daughter and watching her play on the hospital’s playground was a stark contrast to our son who was in a medically induced coma in order to heal from heart surgery. Our daughter became a constant reminder of what the future would hopefully hold for Micah. We had plenty of other examples around us of other, grimmer, potential futures and it was very important for my mind to be able to lay hold of a positive example in a visual and real way.
In a similar way, having friends and family come out and help, deliver food, offer to sit and talk, take us to lunch or dinner, play games with us, and generally just be there for us was helpful for keeping us sane. The truth is that while the offer of help always seems to be on the table from everyone, most of the time you aren’t able to reach out for it. While there in the hospital you have a dual effect of not wanting to bother other people with your very big problem and not having the right sense of time or situation to ask for help. Operating on little sleep with a crazy amount of stress makes for an inability to ask for help, especially when you are still trying to follow the social norms of asking for help. The endless loops of “if it’s not a bother” and “only if you want too” get too difficult for the parent sitting next to a kid with his heart on display. What we really needed were people who would just come out and help without us putting much effort into asking for it. We were extremely fortunate in that we had such an abundance of those people around us.
We had lots of other friends as well, people who offered help but who we didn’t ask until much later when we could play the social “asking for help” game. It was good to see them and they were important to our journey as well. We also had other friends who flaked out on us a couple of times. People who even lived near the hospital who couldn’t seem to ever make it over. Don’t get me wrong, it’s not an easy thing to put your own life on hold for a while to visit friends in need. But then again, visiting your friends when they are in need and it isn’t convenient is one of those things friendships are built on. Love isn’t a feeling, it’s the willful act of sacrificing your own needs/wants for the good of the person you love.
Ultimately going through this kind of experience gives you a very real and clear line of sight on who your friends really are. Who’s actually willing to drop their own stuff long enough to help you pick up yours. Obviously there is never a desire on our part for anyone to be making any kind of huge sacrifice for us, no one should be putting their job or marriage or anything like that in jeopardy. But when you are running a marathon you need running buddies, even if you’re only with them for a mile or two and then they drop off or you do. You need them to help you survive, to keep you going, to remind you of why you’re doing this thing. Even if they don’t know that that is what they are doing.