Monday, May 20, 2013

An Update on how Luke is doing after his surgery, with a bonus of lots of pictures to share, enjoy:-)

I was blessed to be asked to speak at the grand opening for the new wing of Mary Bridge hospital since I had been a part of the design committee. The new hospital addition has turned out to be absolutely gorgeous. Gordy and the kids came to hear me speak at the second ceremony I spoke at on the opening day, here behind us is just one of the amazing murals they have on the med/surg floor. Luke was having a rough day but we brought him along anyway:-)
 Let me begin by saying sometimes I hate the question, "how's Luke doing?" The positive person inside me wants to say that he's doing just fine, but the honest person inside me is screaming no he's not doing fine at all. I'm thankful to say that Luke's surgery went fine, it didn't happen until 8:30 pm which lead to him having to spend the night in the hospital but we went home the next day. The only concern that we've had since his surgery is the fact that the surgery site on his back has not been healing as nicely as the huge surgery site on his front abdomen area. We noticed that his back was bleeding much more than the front and then when it started looking a bit swollen we finally took him into the Dr. to have it checked out. After the Dr. examined the site he said that it didn't seem to him to have any infection in it, but his blood work told us a different story. But since Luke had been put on an antibiotic for what his pulmonologist thought was bronchitis the week before we became concerned his pediatrician thought that the antibiotic he was already taking should take care of any infection he might be dealing with.  
Here's Luke going home the day after his surgery
One of the positive side effects to getting out the pump has been that Luke no longer needs any medication to keep his digestive system working, which has been great because the throwing up that we were dealing with and the constipation issues have now been resolved. I wish I could say that his oxygen needs have also been worked out but that would not be a true statement, he's still needing quite a bit of extra oxygen, but I hope once he's fully recovered from his surgery that too will begin to get better.
Lily made this picture all by herself one day, I think she did a pretty good job of making Luke in his wheelchair. She made this picture the day after we went for a long walk at the park.
We finally had a case manager come out to do an evaluation of Luke's needs and we are going to be getting some much needed caregiver hours, though I'm still waiting for a call from her to say exactly how many hours he will get. Luke will also qualify for medicaid and SSI therefore cutting the amount that we spend on a monthly basis for all his medical bills down to nothing, they will also be paying for his diapers and other necessary items that he needs. That will mean that for the first time in 14 years we will finally be able to stop buying diapers, the savings there will be great also.
Here is Lily reading to Luke out on our back porch, I recently found a hammock with a shade cover on it and it perfect for Luke to use on some of the beautiful sunny days we've been having here lately. Lily was proud of the fact that she read 32 pages to Luke that day, she is becoming quite the little reader lately, taking after her momma:-)
I finally scheduled Luke's knee surgery and I have to say that has been one of the hardest things I've had to do in a long time. We know that Luke needs this surgery to get his legs bending again but the thought of putting him through another surgery, let alone a very painful surgery has me on the verge of tears all the time lately. The Dr. has told us that there is no guarantee that Luke's legs will ever go straight again and there is also no guarantee that they will stay bent, there is also great cause of concern on whether his legs will heal nicely and since the incisions on both legs will be very long there will be a lot of area for the incision to heal. Sometimes I say to myself how can I continue on another day on this journey, seriously this surgery has knocked me out almost stealing all my joy. I know my joy is not reliant on my circumstances, on how Luke is doing, but for me it has to be  reliant on my faith in God. I was telling Ezekiel tonight that I have to work on keeping the joy of the Lord, as I know that it truly does give me extra strength when I am leaning on HIM alone. My secret on those days that are so very hard is to sing praises to Jesus and He is faithful to pull me up once again and remind me that with His help I can do all things, through Christ who gives me His unending strength, thanks be to God!!
I was so blessed to have Sarah contact me right after I spoke at the first ceremony at Mary Bridge telling me that she was at a park that was only a block away from the Hospital so that I got to go spend an hour with her and Penelope, what a huge blessing from God!!
Zeke and I went for a walk at the Nisqually Refuge, he was so excited to see the little goslings that I had to take a picture of him with the ducks behind him.

I'm thankful that Auntie Cindy took this picture of Lily with her science project before she planted it, because a week later one of our local deers ate her project for lunch.
The day before Mother's day I got to spend some time with my mom doing one of her favorite things, taking a drive through some beautiful country. She has passed on her love of exploring new places onto me. Here we are at the Mima Mounds which happens to be a mystery in Washington, acres of mounds that no one is sure how they came to be.  

On Mother's Day we went up to Seattle to see Daniel and Sarah dedicate Penelope at their church, it was such a sweet ceremony.  

Natalie and Sarah celebrating their first Mother's Day. I'm pretty sure I have the most beautiful grand baby girls in the whole wide world! The most beautiful children too:-)
After the church service we went out to eat at the Spaghetti Factory. The only bummer about that day was the fact that Luke was not well enough to join us, he had to stay at home with his caregiver and it just about broke my heart.

Josh, Natalie and Abigail spent the week with us and of course I had to take them back to the Mima Mounds after discovering it with my mom the Saturday before.

Of course we had to pick a day that it would rain for our hike at the Mima Mounds

   We also went to the Tumwater falls and I couldn't resist taking this picture with the beautiful canopy of rhododendrons over head.

Our hike next to the falls was absolutely gorgeous even if the weather was not so great:-)
It was really hard saying goodbye to Josh, Natalie and Abigail as I'm not sure when I will get to see them again. I'm just thankful we were able to find a day to go on a hike, little Abigail is such a trooper, she too loves to explore new places!

I would really appreciate your prayers for Luke, especially that his oxygen needs would get better and that his back surgery site will completely heal. Could you also say a prayer for me to find peace in my heart about Luke's upcoming knee surgery?

Thank you and God bless you,
Luke's Mommy Sue