It’s a very surreal feeling, being back in general care. We were here once before for a very short time. We thought then that we were on our way home, that was two weeks ago. Hopefully this time will be different. It feels different. All that stands in our way is one more trip to the OR to remove the Broviac catheter from his chest (scheduled for Wednesday morning), his little boy surgery, to continue doing well with feeding, and all the normal stuff that goes with discharging a baby. We’re being told Friday. Evan will go home on 4 medications. Lasix for fluid retention, captopril for heart function, phenobarbital to suppress any more seizures (this one we will only have for a month), and baby aspirin which he’ll take forever to help prevent clots. I’m not sure how long the Lasix will last. The captopril will last until the next surgery at the very least.
As strange as this may sound to most of you, it will be with very mixed emotions that we leave this place. The biggest thing is knowing what to do with and how to take care of Evan if something happens. Not having the safety net of doctors and nurses right there is a scary feeling. The hospital is doing a great job of preparing us and providing us with resources above and beyond our doctors in Kalamazoo. Additionally, over the past 40+ days and nights we have met many great people, both families and staff. Even though we have not grown really close to any one person it feels, at least to me, like we’re some kind of big family. Maybe family is too strong of a word but we’re all here for similar reasons and we all have the same goal, to get these kids healthy enough to go home with their families where they belong. Sarah and I spend much of the day on our computers looking at various things on the internet, one of these things is blogs of other families who have been in our position already or are walking this winding road with us. Sometimes this can be very difficult since not all stories are happy ones, but other times it is very uplifting and therapeutic to see how well kids do after having these surgeries. One such case is Aly Jean. Aly was born in June of 2009 and has had all three of the surgeries that Evan must have. Her last surgery, the Fontan, was performed here in Ann Arbor (as were all of her surgeries) in March 2011, she was in the hospital for a mere 8 days after that surgery and is now thriving like any two year old. Among a group of kids playing, you would never pick Aly out as being any different. She’s an inspiration to us and I can only hope that Evan does as well as this amazing little girl. You can follow along with Aly here.
There are several other families here that now hold a special place in our hearts as well. The Butcher’s are a family we met through Aly’s website and happen to be here at Mott right now as well. Their daughter Brittany (13 years old) had a heart transplant in late 2008 and her body is now rejecting it. For the past several days she’s been sedated and paralyzed to let her body recover stress free. She’s on about 20 medications, a ventilator, and her blood is being removed, ‘washed,’ and put back in her body. This is called plasmapheresis and essentially strips her immune system to zero in order to stop the body from attacking the heart. Mia Wilson is another miracle in the making. Her and her family (parents and 3 sisters from Akron, Ohio) have been here for nearly 6 months and unfortunately little Mia still has a long way to go. Before she was born her parents were told that she wasn’t going to make it, but 4 days after birth she was still holding her own. She was flown to Mott Children’s hospital where the amazing staff here has helped with her heart problems, a stroke, bouts with severe hypoglycemia, hyperbilirubin, hepatic insufficiency and multiple stomach and bowel problems. Mia’s website is http://www.miasbigheart.com/ and I highly recommend watching the 13 minute video. Please keep these and all CHD families in your thoughts and prayers. Congenital heart defects are the #1 cause of death among all birth related defects. Nearly twice as many deaths occur from CHD than all childhood cancers combined.
A group called Metals4Mettle came by today and gave Evan a medal from the Detroit Marathon. They had dozens to choose from but I chose this one because it’s close to home and looks very cool. These metals are donated by finishers of marathons all over the world and given to children and adults that are “fighting debilitating illness who might not be able to run a race, but are in a race of their own just to continue to live their life.”
