A Test of Faith/ A Battle for My Will

There have been so many things happen since Sunday night that to recount it all seems a daunting task. 

Sunday.  The day began with church.  Keenan was so excited to get back to what he loves to do: play air guitar during the praise and worship portion of the service.  He sat in the pew so well!!!  He looked strong and balanced.  We spent the rest of the day around the house, but by evening Keenan was not wanting to do anything but lay in the bed.  After a bit of investigating the reason for the lack of energy and interest in doing anything, we noticed the incision site was pretty swollen and he had a slight fever.  Not good.  After a couple of phone calls, we did what we dread most...went to the ER. 

I just could not believe this was happening to Keenan.  Unreal!!!!  As he lay on the bed in the ER, awating another doctor to take a look, the hated IV start, and the plan of action, tears began to flow from my eyes and they would not stop.  The week at St. Louis and the unknown about this episode was just too much for this mom.  I was releasing my stress and fear quietly down my cheeks.

We knew the area was infected, but did not know the extent.  A sonogram was done and determined there was no abcess in the area; which was the news we hoped to receive.  That would have meant the infection was deeper in the skin and would have required the area to be drained.  So, Keenan was started on two high-powered antibiotics and sent to his "home away from home", the pediatric floor.  The rest of that night was filled with more questions about his history, getting ourselves settled, hanging more medications, and laying our heads on the pillow about 2:00 a.m. 

Monday:  Well, I did not get any sleep Sunday night.  When I sat up in the bed for the last time early Monday morning, the tears were flowing again.  Knowing everything Keenan had been through, and learning more than I ever intended about the medical field, my mind kept wandering back to the fear of him getting another infection in his shunt.  I needed some assurance that the possibility of that happening again did not exist.  The doctors were able to give me reassurance, so I decided to take a deep breath and remember that God is in control and that none of this took Him by surprise.  It is hard sometimes, to step back from crisis and go back to what I know to be truth, but if I don't, the battle for my mind and my will would be lost.  I can't let that happen!!!!!  That is why God has surrounded me with such a great support group, to remind me every single thing that happens in our lives is sifted through His hands, used to make us stronger in our relationship with Him, and ultimately to bring Him honor and glory. 

By the time he awoke Monday morning, the incision area had already started the healing process.  It was less swollen and not as red.  A great gift from God to spur me on and keep me going.  Keenan had a good day and even enjoyed some time with some of his favorite people on the planet; the Child Life Team at Wesley.  They were the BEST medicine for my son and he loved the time he spent with Ben.  It was very special for Kee.

As the day progressed, Keenan put out a great deal of sweat and the fever seemed to be gone.  More signs of progress.

Tuesday.  The incision looked even better.  Almost all the swelling, the rash that had set up camp on his back, and the redness were gone.  Yea.  A great way to start the day.  A promising sign of things to come, right? 

Around noon we were given the okay to be dismissed from the hospital if he did well with the first dose of oral antibiotic.  Great news, but I was still holding my breath and hoping all was fine.  Keenan did some physical therapy, had a lunch date with a buddy, and had an interesting cooking session with Ben and some of the other members of the Wesl;ey Child Life staff.  Keenan had  a GREAT time.  It was awesome to see him having fun. 

About 4:00, we left the hospital.  Keenan seemed to be doing well and I was glad to be out of there, but still scared.  He was sent home with oral antibiotics and well wishes.  A couple hours after our homecoming, Keenan had a fever and was complaining of a headache.  He may have had the fever the entire time because the hospital had switched him to Motrin to help with his back pain in preparation for his dismissal.  Well, needless to say, I became quite worried.  The incision site looked fine, but I was worried, so made a couple phone calls to the doctor.  They advised me to keep the Motrin going and if the fever got above 102, or the headache became more intense, he would have to go back to the hospital.  I have to say, at that moment, I felt defeated.  There was no way out of this mess for my son and the thought of taking him to the hospital for another IV stick was more than my emotions could take.  I did not understand why God was allowing this to happen to a sweet little boy who had endured soooo very much already.  It broke my heart.  I went to the front porch, cired out to God in prayer, pleading that He take the fever and infection from Keenan, and called my mentor (who is also a nurse) to pray with me and set my thinking in the right direction before going to bed for the night.

So, Keenan did very well overnight and the fever came down and has stayed down as of this post.  There has been no other mention of a headache and he even went to physical therapy today.  What a difference a day makes!!!!  Yesterday I just did not feel quite right about Keenan for some reason, but today I feel more at rest and peaceful with the situation.  I saw God's hand work in Keenan, I believe, throughout the night.  In fact, after my time outside with God, I went to check on Keenan and his head was not as hot, and has not returned to that 102 temp since!!!!  Some would say coincidence, but I say that was a direct and immediate answer to my prayer.  WOW!!!

One last thing I have to share becasue it affirms the need for ongoing faith and prayer in my life.  I have a devotional, Streams in the Desert, and this comes directly from the passage for today. 
"Everyone born of God overcomes the world.  This is the victory that has overcome the world, even our faith." (1 John 5:4)
"If a person allows it, he can find something at every turn of the road that will rob him of his victory and his peace of mind.  Satan is far from retiring from his work of attempting to deceive and destroy God's children.  At each milestone in your life, it is wise to check the temperature of your experience in order to be keenly aware of the surrounding conditions.  If you will do this and firmly exhibit your faith at the precise moment, you can sometimes actually snatch victory from the very jaws of defeat.  Faith can change any situation, no matter how dark or difficult.  Lifting your heart to God in a moment of genuine faith in Him can quickly alter your circumstances.  God is still on His throne, and He can turn defeat into victory in a split second, if only we will trust Him."

If I have figured out anything the past few years of being refined in the fire, it is that I always need new faith for the next trial, but have to remember the faith I used in the past to trust that God will be faithful every time.  Without those milestones and victories with Him, it would be nearly impossible to keep going and not lose hope (or my sanity).  I also know prayer is real and active.  I truly believe that is what happened with Keenan last night.  God heard the cry of a mom on her knees and was merciful, out of His great love for his own children. 

So, here is to every single person who is on their knees praying for us daily.  Oh how precious and powerful your actions and faithfulness.  And here is to God, our healer and perfecter of my faith.  May He receive all glory, honor, and praise for what is happening in Keenan's life.

Love to all, and sorry so long,
Tammy

Pictures

I finally had some time to download pictures from the camera, so this post is sharing some of his journey through pictures.

Saturday Keenan could not take it any longer.  He had to get back to playing the guitar and singing his praise and worship music.  Now, he usually stands in front of the fireplace, but he is not ready for that yet, so sitting on it was a close second.  It was great to see how "strong" he looked while sitting there and playing the guitar.  To me, his balance seems better and his feet were flat on the floor!  That is a change from before the surgery.

We typically eat at the bar in our kitchen, but since Keenan's feet are not allowed to dangle right now, we have resorted to more creative ways to dine.  The two of them enjoyed lunch in the hearth room.

The next two pictures were taken Saturday before we left the hospital.  The hospital has a garden area on top of a section of its roof.  It was very pretty and a great place to "get away" from life in the hospital. 

This was taken during Keenan's second day of laying flat after surgery.  He was a trooper indeed.  It was hard for him to lay flat for two days, but he made the best of it. 

That is all for now,

Tammy

Praise and Thoughts

Thought I would add a few pictures to the blog...finally.

Once Keenan was able to sit up in bed, he had all the comforts of home (or perhaps even a bit better if you were to ask him).  Nothing like having some nachos, a TV, and a Wii all within the length of your arm.  :-)

One of the first things Kee wanted to do when we returned was to hang out with family.  So, on Memorial Day we had Brad's family over for dinner.  Here are the three Cox kiddos hanging out together on the floor.

Well, good news about the incision.  The doctor removed the dressing a day early, and it was a good thing.  Keenan's skin must have reacted to the tape they used to cover the incision.  The area is still red, pimply, and looks a bit "raw", but the actual incision itself looks good.  So, thank you for praying over that situation.  We are keeping an eye on it, but I am far less worried than I was.  Yet another test of faith and opportunity to praise God from whom all blessings flow.

It has been a week since Keenan was able to get out of bed and I thought it might be fun to share some of the things he can do now that were not possible a week ago.  When we got him in the wheelchair the first time last Friday, he literally could not even hold up his head!!!!  He had no strength at all.  Now...
*He can roll over and experience little to no back pain
*He can crawl around on the floor
*He can move his feet in ways he has NEVER been able to move them

*His legs can move independently, which has not ever happened

*He can sit up straight and have his feet flat on the floor-another first for him

*He is starting to build more strength to get him ready to get back into the walker

*He has been cast for new braces that will come just above the ankles!!!!  I think he is going to be very excited when we put those on his feet the first time

So, what a difference a week makes.  I had no idea just how awesome this surgery would be, and still don't comprehend it entirely, but being able to catch a glimpse this week makes me so excited about the kind of life that will become reality for Keenan just over the mountain.  WOW!!!!!! 

I am so thankful God has gifted His creation to do things that give kids (and their families) the kind of life they never dreamed would be possible.

So what now???? 

Well, he has started his daily PT with Sarah.  They are a good team.  She has the an excellent relationship with him.  She understands Keenan's need to be a little boy, along with helping him get stronger through physical therapy.  It is going to be so fun to watch what the two of them can do.

Keenan will also have one more procedure.  This one will loosen, if you will, his heel cords and hamstrings.  This is not a new procedure, but the doctor in St. Louis has refined it to make it much less evasive and with little to no risk of lengthening the tendons too much.  So, that is set for Sept. 13th and will require one night in the hospital.  Once that procedure is complete and he has had the appropriate amount of therapy, there is a real possibility he will no longer needs bracing of any kind.  And, our ultimate goal, of course, if for him to be able to walk unassisted at times. 

Great things are happening daily and even greater things are yet to come!!!!!!!  It is not easy, but knowing there is a great reward in store on a day only God knows, gives me strength and excitement to keep pushing and doing what I truly believe is best for that special little guy.

All for now....I am exhausted.  :-)

Tammy

Need Prayer for Healing of Incision

Keenan's incision has not been uncovered yet, but we are having drainage from it.  Had my friend look at it who is a nurse, and followed-up with a doctor today.  So far, they think the drainage is okay, but we are watching it closely.  The tape is starting to roll, which could allow for bacteria to enter the area.  We are not supposed to take off the dressing until Friday, which seems like an eternity at this point.

Tomorrow the doctor wants to look at the site again, to see if there have been any changes and will decide what to do, if anything, at that point.  I am trying sooooo hard not to worry, but as the tape has rolled a bit this afternoon, it looks like a small area of skin was irritated by that tape and lifted, leaving that spot looking "raw", for lack of better explanation.

Man, it just seems like I can't ever get to the point with Keenan where I feel like I can exhale.  He is doing so very well from the surgery and making progress in getting stronger each day.  That is exciting, but feel like my full enjoyment of it is stifled by my fear that he could have another possible hurdle to jump if that area becomes infected.  I am just not going to allow myself to "go there".  I have no reason to worry, but only to be cautious and watchful.  God does not want us to live in fear and in a couple of days I want to be able to say I trusted and was not consumed by that very thing being put in my path to make me stumble.

So, prayers the next couple of days for that site are needed.  Also, if you could, pray that I put my faith where my mouth is and truly trust that God is over this entire situation.  I know He is in my head and believe it to be so in my heart, but the waiting is where we are put to the test and get refined.  Boy, isn't that the case!!!!  There must be no other way to grow in faith, huh, because I am pretty sure I would have run into it by now.  :-)

That is all the time I have for now.

Thank you for lifiting this situation in prayer.  I don't know what I would do without friends and loved ones to stand in the gap and pray with me. 

Tammy