in the 4 days since I last posted. I am home for 2 days to work a bit & tend to some personal business. It's really hard to summarize what's happened. So...
Evan's surgeon was out of town this weekend, so another surgeon who has been consulting on Evan's case came by. He is the Chief of Staff at Shriners & Chief of Ped. Ortho. Surgery at Children's Hospital. He could see that the very large hospital Ev was in was probably not the best environment for him care-wise & that it put a lot of strain on us as parents. Also, Evan's main surgeon was having to fight Medicaid every day to keep Evan there.
Dr. Chief of Staff moved some major mountains & got Evan transferred to Shriner's Hospital on Monday. As it is all paid for by Shriner's, Ev can stay as long as needed to be well. Evan was so excited to be in a kid friendly hospital & the staff is beyond amazing! We are very blessed & happy with this move.
Evan's incision site turned out to be infected with a staph infection. He is on 3 different antibiotics & had a port placed in his chest yesterday so he could get IV antibiotics for the next 3-6 weeks.
Yesterday morning he had surgery again to clean out his incision site. It looked much better than Friday. They stitched him up & he now sports a bright green cast. It's still a modified spica, one leg is casted all the way to the ankle & the other leg is free. By yesterday afternoon, Evan was in the rec room shooting baskets from his reclining wheelchair.
Today he is cranky & very, very angry. We feel this is somewhat to be expected, as he has had 3 surgeries in 3 weeks & you can't expect a guy to be happy every day when he is facing such challenges. The staff is so wonderful & patient.
The therapists got him to hop (with walker & support) on his good leg 3 feet today! This means he will be able to make it down the hall to the bathroom at home, something the therapists at Big Hospital said was not going to happen.
Evan's catheter was finally removed today (hallelujah!) & everything is working fine in that area.
As of today we have housing at a wonderful place that is sort of like a Ronald McDonald house. It is $25/day and that includes breakfast & dinner! Harold says it is in a nice suburban area, with shopping nearby. I am glad to not be staying at the Extended Stay Crack Hotel we spent 2 nights at!! I guess there was a reason it was $40 a night.
We have no clue when Evan will get to go home. In the last 4 days it has gone from 2 or 3 days to 2 or 3 weeks then back to 3 or 4 days. We have decided he will go home when they walk in one morning & say "Go home!" It has been a huge challenge to just go with the flow in this area. I have shed many tears but am (for now) at peace & learning to take one day at a time. Quite the discipline for a planner like me!
Prayer request for today: that God would help Evan process his anger & help us know how to help him in this area. We know that he has to come to the end of himself, just like all of us do, and rely on God for strength. We have faith that Evan will be able to respond to God as he has always done before when he is angry & upset.
God has been providing for us in ways great & small & too many to recount here. We have had lots of friends who have driven from near & far to visit us. My brother-in-law & his family have been constant visitors, as we are in their city, which has been great. My niece & nephews have been faithful encouragers of their cousin. We can feel the prayers everyone is praying for us, believe me. At times it seems as if we are wrapped in a huge, much needed, spiritual hug. Thank you, thank you, thank you to all.
My prayers are with you and yours :)
As a teen I spent a lot of time in a Shriner hospital, and I know the struggles and the pain.
Be encouraged to know that through everything Evan's walk and your own will be strengthened.
Posted by: Valerie | March 21, 2007 at 08:40 PM
Lori,
I'm so sorry Evan had to go through this. I feel bad for him. I'm so glad you got the environment improved.
God be with you.
Take care of yourselves, all three of you. I'm glad you have family near, to be supportive. That is a huge blessing.
Love,
Julana
Posted by: Julana | March 22, 2007 at 09:42 AM
Aaaack! It's killing me not to be able to see Ev during all this. I told my mom to give you an extra big hug for me though. I am praying for you, and Harold, and especially Evan.
Posted by: Molly | March 22, 2007 at 09:03 PM
I'm so glad to hear about the transfer to Shriner's. It makes such a difference to have staff members who know how to deal with your specific situation. Although we would prefer a total healing, for now we will be grateful that God provided someone to carry Evan into the pool when the angel stirs the waters.
God bless,
Kathy
Posted by: Kathy Nickerson | March 23, 2007 at 02:40 PM