Kennady got out of surgery at 2pm on Thursday, however, because of the medicine in the procedure, she did not wake up from surgery until 11:30pm! Then, she was up for 24 hours. It was a very difficult first night.
Because of the sensitive incision on her back, she must lie on her stomach for 3 straight days/nights. If she moves too much, there might be leaking spinal fluid and the doctors would have to go back in and seal it up. On a normal day, she might spend 30min on her belly and then she is ‘fighting mad’ and ready to turn back over on her back. So, for her to spend this many hours on her stomach is really difficult. We propt up a iPad in front of her so she could watch Netflix. This has helped some.
On Friday, my parents came up to the hospital so that we could have a break. We took the boys to dinner, putt putt, and to get ice cream! So fun! They ended up staying with Erica at the Ronald McDonald House. I (Robin) stayed up with Kennady at the hospital.
Kennady finally started going back to sleep around 1am Saturday morning. She slept off and on all last night. The nurses come in and out at least every four hours to manually check all Kennady’s vitals. This makes it very difficult to sleep! The nursing staff and doctors have been great at Dell Childrens’ hospital. They have been friendly, helpful, and most of all considerate of our wishes.
Twice a day, therapist come into the room and measure Kennady’s flexibility. This is to determine if the medicine going into her spine is working or not. They adjust the flow according to her tightness. The good news is that the medicine is working great and she has a ton more flexibility. Her arms and legs are moving like a normal body. In a few days (after all the surgery heals) we will really see the big results when she gets back into her wheelchair. We can’t wait.
Thanks so much to everyone for the support! I will be preaching tomorrow at PromiseLand San Marcos and can’t wait to see everyone. Erica will be spending the night back up at the hospital and then we will switch again tomorrow night. If you are interested in visiting, we would love to see you. Many folks have asked about bringing us food or coffee. We love to eat and drink coffee, however, coordinating the food has been a bit difficult. It might be easiest to simply visit when you can and bring us a gift certificate if you would like. Of course, just seeing your face will be good enough too.
If you haven’t read the details on why she had surgery, you can get the details here.
Gotta show her how it is done! By the way, she got a hole in one on this hole.
Avery!
Three generations! We are blessed with some great grandmothers.
All the gadgets around the bed
Boys taking it to RMD.
Boys wrestling at the Ronald McDonald House. What a fine place!
Jude taking on the shark
Don’t be a sock hater! At the hospital, you just want to be comfortable!
This post is from July 2013. This surgery ultimately went wrong. We are having to do it over again. Sept 16, 2014. A New post will be on our blog Monday, Sept 15, 2014 with more info.
For the last several years, Kennady’s muscles have gotten really tight. So much so, that they are contracting her arms and legs completely and creating scoliosis in her back (curvature of the spine). This causes a lot of pain and difficulty in bathing, getting her in and out of her chair, and basically all movemnent. We have given her medicine (baclofen) in hopes of reducing this tightness. It has worked some but it has a lot of negative side effects with little success.
A few months ago we decided on a surgery that would insert a medicine pump in her abdomen, with a catheter into her spine, that will automatically put the medicine directly in contact with her nervous system and muscles. This will allow the medicine to skip the ‘blood brain barrier’ and not cause the side effects. It will also allow us to use lower doses with a greater reward.
Today’s surgery inserted the catheter and if it works successfully, they will insert the medicine pump on Tuesday. We have to stay in the hospital the whole time. It will take around 8 days for the complete recovery to happen and before we can go home.
We got to the hospital at 7:15am, we met with the surgeons, and then she went into surgery around 8:30am. We waited around the hospital until we were called back to meet with the surgeon (post op) around 2pm. It was a very long process because they had a difficult time getting the catheter in the spine. In fact the surgeon said, “This was the most difficult catheter placement I have ever done. We almost called off the procedure. We couldn’t get the needle in the spine, but God was on our side. I said a prayer and pushed one last time.” The final time was perfect and the process was completed.
As of 6pm, she still hasn’t woken (is that the right word?) up. The medicine is already working tremendously well. Her muscles are extremely soft! This is awesome. In fact, she laying in a way that looks so peaceful and relaxed. It was almost strange to see her body configured like a normal child. Actually, it’s beautiful.
We are so thankful to you all for the prayers and the outpouring of support. Mike Hollifield brought us lunch and Ruth Palacios brought us dinner. Randy Phillips came by and took me (Robin) out for a few minutes. Then, we received a huge gift basket from PromiseLand Central! WE ARE TAKEN CARE OF!
After Kennady went back to surgery, I ran to this taco shack off Airport Blvd. for some TACOS
Erica is beautiful!
Sticking tongue out at dad
heading back to surgery. this guy was a hunk.
Here is our suite!
occupational therapist taking measurements on Kennady’s new flexibility.
My dear friend and mentor, Randy Phillips wrote this song several years ago. Never has a song resonated with me (Robin) more than this. I have heard it sung over and over, however, to read the lyrics as a poem is even richer to me at this point.
Blessing in the Thorn
I read about a man of God
Who gloried in his weakness
And I wish that I could be
More like Him and less like me
Am I to blame for what I’m not
Or is pain the way God teaches me to grow
I need to know
When does the thorn become a blessing
When does the pain become a friend
When does the weakness make me stronger
When does my faith make me whole again
I want to feel His arms around me
In the middle of my raging storm
So that I can see the blessing in the thorn
I’ve heard it said the strength of Christ
Is perfect in my weakness
And the more that I go through
The more I prove the promise true
His love will go to any length
And reaches even now to where I am
But tell me once again
Lord, I have to ask You
On the cross You suffered through
Was there a time You ever doubted
What You already knew.
We have been unable to post lately because life has simply been too busy.
Kennady has gone through difficult sick patterns, Erica is slammed with school, and Robin (me) just finished the busy Easter season at church. Not to mention we are full time moms, dads, sisters, and brothers.
Life is hectic and busy…so much that we often have difficulty remembering what we are doing, but then again we are getting old too.
The pic above is Erica getting meds ready for Kennady’s bedtime. She takes 8 different meds at that point in the day. Most of those are pills that we have to crush, dilute with water, and put through her feeding tube. They help her relax, digest her food, fight allergies, and regulate her kidneys.
On Wednesday, I received a call from a pregnant mom in our church that received the exact same news that Erica and I received when Kennady was in the womb “we aren’t seeing something we should”. It turns out they are walking the same path we did 12 years ago. We are so honored to walk this path with this family. Please keep them in prayer.
We can not wait to tell you the story of us meeting our favorite hip hop star, TobyMac! That will come in a post ASAP.
I just got the call that our lawn team has all bailed this weekend and the church grass still needs to be cut. Therefore, I just put on old jeans and am heading out the door to make the property look splendid. After all, my pastor always said, “you don’t serve the bread of life on a paper plate.”
We love you and thank you for your support of us through difficult times. We are here for you.
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