Saturday, July 7, 2012
We are now six days out from surgery and just three days from leaving town to head up to Michigan. We have been busy preparing for this trip and are pretty well ready to go. Here's what we've been up to: He knows why we are going to Michigan. He knows he's having heart surgery. We didn't go into a lot of detail, but basically have answered any and every question he's had about it. He wants to talk about it every day, seems to be looking forward to the trip and tells friends, family and neighbors the date and what he's having done, etc. He is most concerned that we will leave him. I have reassured him over and over that the only time we can't be with him is when he's in the O.R. and that's because the doctors and nurses are the only ones that need to be in there in order to keep it clean and safe. I told him Dr. Bove will be in there with him when we can't be, and that he'll be asleep the whole time. He is also worried his surgery is going to hurt. I explained that he'll be asleep for the whole surgery and won't feel anything, and that when he wakes up, if something is sore he can let us know and we can give him medicine to help with the pain. He has been saying he just doesn't understand how they get the heart open and he wonders what it will look like when it is open. I have hesitated to use the word cut because I don't want to scare him. I happened to see a hospital in Florida that recently did a live feed of a little girl's heart surgery and posted updates and pictures on their blog. I asked him if he wanted to see what a heart looked like during surgery and he said yes. I showed him the blog and he wasn't bothered by it, but also didn't want to look at it for very long. His other big concern seems to be "tubes". I think by this he means IV's and the ventilator. I don't even think he knows about or remembers chest tubes, which I've been told are the most painful part of recovery. We are praying that by the time the sedatives are lifted, he will already be extubated and we won't have to worry about him fighting the vent. He has been awfully cute with some things he's said lately. He was pretty restless in church last Sunday and Greg was kind of trapping him between his leg and the pew in front of us. Connie loudly proclaimed, "Dad, Stop! You're hurting my pacemaker." Of course that got some looks of pity from those around us and made Greg feel terrible. When we met with Dr. Bove at the reunion he heard him say that once we got that new conduit in there that he'd be hard to keep up with. Now every time he's moving slowly (getting in and out of the car in 105 degree heat, taking forever to get dressed, etc.) he says, "Mom, I'm just slow because my tube is too small and I need a new one. Once I get a new tube I'll be faster." His new favorite game in the pool is "Dunk the Doctor" and he and MK take turns sitting on the steps of the ladder waiting to fall in while the other throws balls at the side of the pool, trying to hit the target. They pretend they are Dr. Bove, Dr. Bradley, Dr. Bromberg and Nurse Colleen. It is pretty hilarious to watch! We wanted him to receive the sacrament of Anointing of the Sick before we left and we had some religious articles that will accompany him into the operating room that we wanted to have blessed. He'll be taking a rosary with Lourdes water inside, a guardian angel prayer card, and two medals. One is of the Sacred Heart of Jesus and one is of the patron saint of heart patients, St. John of God. We visited with Msgr. Callahan, who was the priest at SEAS when I was a young girl. It was partly due to his welcoming spirit that I decided to convert to Catholicism. We chatted for a bit and he got to know Connie and Mary Kathleen. He's been following Connie's story from the beginning and said countless prayers, I'm sure. Connie said he was scared the Anointing was going to hurt, but Msgr. reassured him. He's had it done about twice a year during mass at Assumption, but he was a little nervous this time. Msgr. prayed over him and Anointed him and then we left. We've also been trying to help MK deal with everything as well. She's a very anxious child to begin with so having a brother with a chronic illness has not been easy on her. And in order to help him find a little joy during his upcoming stay, he's been able to pick out some new toys and books to take to play with/read in the hospital. I'm sure that this, along with all the attention he's received from friends and family has made her start to feel a little left out and jealous. She's not typically like that, but she asked when we were leaving the rectory why she never gets Anointed and I think just the fact that Mom and Dad are going to be away from her for a time is a little unsettling for a seven year old. Karsten is, of course, too young to understand or anticipate what any of this means for him. I'm praying that regular FaceTime visits will be enough for him while we are gone. He adores Grandpa especially, so I'm hoping that the fact that Grandpa will be with him and he's going to have his same routines and be in his own house will help. It's Saturday afternoon and we're just about packed. We just have a few odds and ends to gather before we leave on Tuesday morning. We have opted to quarantine Conway until we leave, in hopes we can avoid any illness that would require postponing surgery. It's going to be a long few days at home! Please pray that he remains healthy and that his fears are relieved. We are asking that God give us what we need each day, and that Conway's story will give others hope and increase their faith. One thing Conway is requesting is to FaceTime people while he's in the hospital. Traveling for surgery is hard on everyone. Staying in town definitely has it's advantages as far as convenience, cost and support systems, but we feel that due to his complexity and history, U of M is the best place for him to receive care at this time. He has experience using Apple's FaceTime with grandparents and cousins and would like to use that tool while he's in the hospital as well. We think it would be a good distraction for him and help pass the time. If you have an iPhone/iPod/iPad and would be interested in talking to him, you can leave your contact info in the comment section or email it to me at email@example.com.
Posted by Erin Beckemeier at 3:13 PM