Tuesday, August 23, 2011

Transferred, yeah baby!!!

Not down to rehab like we are ultimately hoping, but to Intermediate Care. His vitals will be checked every 4 hours, instead of hourly, which will hopefully lead to some better nights of sleep and it is a good sign that everything is getting dialed in in regards to his hormone dosages. The one thing that has been difficult to get right is the hormone referred to DDAVP, which regulates urine output. Too much of it and he retains water causing his sodium levels to drop to low. To little and he literally pees like a race horse and his sodium levels become to high and he feels like he is dehydrated. His high heart rate the last few days may have been due to not enough liquids, who knows. The last few days have been getting all this figured out.

One thing I have learned is how important it is to speak up when you have ideas. I am not sure if my suggestion for the hormone dosage was taken, but the plan moving forward is what I suggested to the nurse last night. A few days back, Kara's mom had a thought about the timing of his hormone dose, which was keeping him awake at night. All that said, Levi has improved the last few days with the help of the staff, but also because Kara and I have been proactive with the things we can have control of, sharing our ideas, giving him a quality diet and "exercise". We hope our stay in this unit is short and we move to the next phase of rehab quickly, because that will bring us closer to home.

Now that Levi is stable the next focus of Kara and I is the stability of Kade, our 4 year old. He has been a champ in all this but the last few days have been difficult for him. The sad reality is that the more time he has away from mom and dad, while staying at the grandparents, the better he does. If he gets a dose of time with mom or dad it is just too hard for him to get back to normal. So Kara and I are going to be putting a lot of focus on Kade and his stability over the next few days to determine what is the best setting for him over the remainder of our time. This is a major prayer request for us because it hurts my heart knowing what he is going through.

We have gotten some glimpses of the Levi of old, he said "cheese" yesterday for a picture we took and we are starting to see some smiles. Hopefully a good night sleep for him will revive his spirits tomorrow.

Kara and I are getting anxious about each of our work situations. Both of our places of employment have been amazingly supportive, but the reality of all this is that we will need to get back into things very soon. Please pray that as our Levi stables up, that we will be able to develop a daily routine and that this will allow us to support both Kade and Levi and put our best efforts into our jobs outside of caring for our kids.

Thank you for your prayers and support. The biggest need we are feeling these days are for visitors. So again I will put forth our shameless plug for a little time down here at Rady's. The sun is always out, there are some great play grounds for your kids, and it really lifts our spirits when people stop by.


Dan and Kara


  1. praying so much for you guys. it seems like there is always good and difficult news. praying for wisdom as you make steps forward with both your boys. love and hugs.

  2. Hi Dan and Kara,
    My name is Laura and I am friends with Hillary and Tom Coleman. I have been following Levi's Journey and yours and know as a parent how you feel. My daughter, Kyra, had open heart surgery at Children's when she was 6 months old (2 1\2 Years ago). Our stay was 2 week and like you, Kyra had an older brother. If he was not with his Mommy or Daddy, he was with family, who would meet up with friends his own age. Looking back, this seemed to really help him. His spirit was full of life, enjoying himself with his "buddies." Also, you are on the right track, asking friends to come visit! The laughter and joy they bring to you both and Levi, will help you all mend faster. We were at Children's yesterday for x-rays and would have come introduced ourselves personally, but I know kids are not allowed into the PICU. Know that I pray for your strength, Kade's Spirit and Levi well being!
    God Bless

  3. I wish we lived closer to you guys, we'd come visit in a heartbeat! Glad to hear Levi has moved to intermediate care. We'll continue to pray for all of you.

    Michelle Vanoli

  4. Praying for you all! I would love to come visit soon...especially if I can have the kids with me it might be much more do-able. Glad to hear Levi's been transferred and I pray he continues to move forward in his recovery so that you can all get back home soon. Love you.

  5. Wish I lived closer! You guys are still keeping me in total awe with the amazing couple and parents that you are. Continuing the prayers! ~Whitney (Ewing) Kahn

  6. Still working on the idea about coming out especially since it sounds like Dad and Mom can't come out here. We are just waiting on the acceptance of this machine that Jason has been working on for almost two years. Once we know we will let you know and it should be some time in September and then we can talk details of how we can help. Love you The Skerritt Clan

  7. Hey Dan. We've been praying for you guys and appreciate the updates. You made a good point that I'd like to second. My little sister was in and out of the hospital for much of her young life having multiple open heart surgeries. One of the biggest things that my parents learned, and the advise they always give to people going to the hospital, is that you have to be your own best doctor and advocate. The people taking care of you are professionals, but they're not paying nearly as close attention to Levi as you and Kara are. You're closely watching whats working and whats not. You know what normal looks like. The misconception is, like you said, "they're the smart people, what would my idea or opinion possibly add".

    So, all that to say, I encourage you to keep up your boldness with both your nurses and doctors. They're spending 8 hours a day watching many patients - you're spending 24 hours a day watching just one. We will continue to pray for you guys.

    Jeff Pray