Wednesday, February 16, 2011

McKenna Update

I don't know how many of you are familiar with my daughter McKenna and her heart defects. For a run down you can visit the page we set up to connect with loved ones while we were in the hospital and click on "McKenna's story". It has been a while since I had to really address this issue because her last surgery was such a success; she leads a pretty normal life. They had to reconstruct her heart when she was four and it took 3 surgeries before that just to get her big enough that they could do the reconstructive heart surgery. It used to consume my thoughts and actions pretty much every day, wondering if she needed surgery, wondering if she was going to survive. Then we moved to Colorado and it was like a new life. No one knew about her and the stress and the trauma we had been through with her. There really wasn't a need to bring it up so I put it all in the back of my mind.

Last year I had a chance to home school all of the kids and I got to really watch McKenna and see how she was doing. I started seeing that she wasn't doing as well as the doctors hoped she would. They were hoping not to have to do another surgery until she was almost a teenager. They will have to do at least a couple more heart surgeries because as she grows the gortex parts they used to re-plumb her heart don't grow with her and that causes her oxygen levels to get lower. Before, they would let her O2 stats get into the low 70's before they would do anything. She is in the 80's right now and you can already tell a difference. It is different watching her now that she is more active and can express what is going on a little better. She gets frequent headaches, she tells me she can't feel her feet, she feels dizzy, all of it a little worrisome. Sometimes she just doesn't feel good and so she tries to put a name to her pain, but just can't, saying her legs hurt, her arm hurts and I can't DO anything to help her...just hold her and give her some love. I know they won't do anything until she gets a lot worse. You can see her heart beating it is working so hard. Her hair and nails stop growing so her body can use the energy somewhere else, she eats a ton but loses weight. But now that she is older and more active and needs to be in school, it will be hard. She looks tired, her eyes droop, she turns dusky, she has a dry cough because as her heart works harder it enlarges and pushes up against her esophagus. I'm beginning to feel like I did the first few years. The old worries creep back. We have been so blessed to have these last 5 years not really having to think about it other than when we visit the dentist (she has to take antibiotics just to have her teeth cleaned), or every year when it's time for flu shots (getting influenza can put her in the hospital). She actually contracted it a couple weeks ago (despite the flu shot) and missed quite a bit of school, another worry.

Rob and I decided that when she needs the next surgery we are doing it in Minnesota. The team there did all of her surgeries and knows her case. They came up with the plan of how to fix her heart because the surgery had never been done before. That presents all sorts of fun things to deal with. Like how we are going to get there, what we are going to do with the kids, because I stay with her in the hospital 24/7 while she is recovering, or will our insurance cover it...

The one thing I know is that it is all in God's hands. He has taken care of us in the past and I have no doubt that He will keep on doing it. So no stress, just ironing out little details and .......waiting. That is the hardest part for me. Having to watch your child suffer, not being able to do anything to help it and just knowing that it will get worse before it gets better. Just thought I would update everyone on the current situation. Nothing urgent, but just things I am dealing with in silence. Prayers are always greatly appreciated. :)
Thanks for stopping by. :)


Laura said...

Kris, I read this in the wee hours of the morning today after I took AJ to seminary. I cried as I thought about all the worry that must have been weighing on your heart as you thought of sweet McKenna. You and Rob are amazing parents. You are one of the most incredible mothers I know. If the time comes for her little heart to need to be repaired know that we are here for you and your family. I know we don't live next door, but I know where your kids go to school, and we do homework and dinner every night too, so we can help out. Most importantly know that starting today, McKenna and her mother will be in my prayers. The Spirit is probably preparing you for the challenge. You can do anything! You have 9 beautiful children and a loving husband. You are already richer than all! Love you, Laura

Ashley said...


Despite how scary this all sounds, you seem like your handling it pretty well. It's a great thing to have a testimony and feel that comforting spirit, and I know that God is watching over your family and is aware of your struggles and feelings and worries. Your family will be in our prayers. Please don't hesitate to call if you need anything! I hope things work out well for you- just remember, it's the long run that counts!!

Love, Ashley

Marsha said...

Wow! I'm tired just thinking about all you have on your plate. Hang in there, and let your sisters in your ward step in to serve when you need help. It is an amazing gift to offer service. I wish I was there to help too!

Mike Tolman said...

While we jab back and forth on FB - you know that we love you and the whole family intensely. I welled up with tears as I read this and respond. I do wish I could take it on me and relieve her. As you mentioned it is in our HF hands and her sweet spirit is watched over carefully. You have a strong family and network of friends. Don't sweat the details as they can be worked out. We can get Dad out there or maybe even MaryBeth as Alyssa's school is homeschool via computer. So do what you need for her and it will work out.