We trust in the name of the Lord

Yesterday morning the neurosurgeon's assistant came in to check on Kaylie and to talk with us. She said, yes the catheter went a little deep causing her new neurological problems, but the shunt is working and so we may leave it alone. They could go in to pull it back a little, but that could cause a malfunction and then we would be back to square one. The ultimate decision would be ours to make when we talked with the neurosurgeon.

Of course as parents we were faced with a huge decision on what was to be done next if anything. LeAnne and I talked about it over and over. After this last surgery on the 24th, Kaylie has not been herself. It is truly like the lights are on but no one is home. She is calling people by their wrong name, messing up a song she knows, wasn't talking, and everything she does is in slow motion, literally!

So, what are we to do? LeAnne and I talked it over and over, who do we trust more? What is going to be the best for her long term? Decisions that any parent does not want to make.

Then yesterday afternoon Kaylie's neurologist and his team came in and talked with us. Upon looking at the MRI that was done the day before, the catheter is in the right position right now. So they agreed with the neurosurgeon that surgery was not needed. The shunt was in the exact spot they needed it to be in! We were told that the surgeon would be in later to discuss with us.

Late yesterday afternoon the neurosurgeon came in and verified that the catheter was in the correct spot, and that if he had done the surgery that is where he would have placed it. Unfortunately, when it went in too deep it went into her thalamus and caused a bruise. He explained that if you get a cut in your hand it gets better in 2 weeks, you break a bone it takes 3 months to heal, and you bruise your brain and it takes 12-18 months to heal. We were blown away! Kaylie is going to be like this for that long of a time?! The neurosurgeon told us, however, that even the small improvements she is making from this every day mean she is recovering at lightning speed.

We knew therapy was going to be a must for her physically, just not so much for her speech and cognitive abilities. We have been told the outcome by the doctors and so now we move forward. This whole thing has been mentally and physically draining on all of us, so we all went to bed rather early.

I awoke this morning with a great verse on my mind, Psalm 20:7 which says "Some trust in chariots, and some in horses: but we will remember (trust) the name of the Lord our God." We can trust what the doctor tells us or we can trust in the name of The Lord our God! Kaylie has already been talking this morning to me in 3-5 word sentences! I choose to TRUST IN THE NAME OF THE LORD OUR GOD! Our God can make the impossible POSSIBLE! May He receive the praise and glory due His name.

We know the power of who we pray to! Thank you for your prayers! Continue to pray for a speedy recovery!

Kaylie eating an ice cream last night!

Good news

Praise the Lord, after a 24 hour EEG monitor the neurologist said there are no seizures!!! He said there was some irregular activity, but nothing different from what has always been there. We are beyond thankful and relieved by this report!

They did an MRI and she actually got through it without sedation. The neurologist feels like the shunt is working, but it's a little deep so they may have to pull it back a little. Her regular neurosurgeon will be back tomorrow and they will get his opinion on what needs to be done. 

Thank you for your continued prayers!

Please pray!

Kaylie has not been herself since surgery! It is like the light is on, but no one is home. Therapists have workerd or have tried to work with her but not a whole lot accomplished.

We spent Friday and Saturday in Orlando for Megan's birthday, nice to be all together. We left this afternoon and Leanne's mom and dad came down for a few hours. Her mom asked Kaylie what her (Leanne's mom) name was and she said Megan. Her mom than said, no, what is my name? She said again Megan. 

Several of nurses said she is not Kaylie. So, one nurse took a light and looked at her pupils (as they normally check) and they did not draw up. They got the doctor on the floor and talked with him. And he said that it might be a "seizure!" 

Not something we wanted to hear after all these surgeries! They have moved her to a monitoring unit and are hooking her up (as I type) with leads to do a 24 hour EEG monitoring!

I plan to preach at my church tomorrow morning and then go back down to Orlando! Please pray!

Pray we have peace through this very difficult time in our lives! We are keeping our eyes on The Lord Jesus Christ for His strength and peace!

Pray for our other two children: Paul and Megan as this is hard for them as well! 

Thank you!

Surgery is done!

Surgery is done. The operation went as smoothly as possible... This time they were successful at getting the shunt into the ventricle. They put the drain into the abdomen again instead of the aorta. That is the preferred location for obvious reasons, and we pray it works! 

Surgery #8 since being here!

Kaylie will have surgery around 9:00 this morning. This is the third attempt to get a shunt in place and working properly, and they are putting the drain into the aorta. Please pray for the Lord to allow this one to work and be her final surgery! If it fails again they will make an attempt through the left (healthy) side of her brain. 

Last night was a rough one. Both IVs in her hand failed; the nurse tried to start a new one and couldn't; then they used an ultrasound machine to attempt a vein that's really deep (Kaylie is swollen so it's hard to see any veins right now). They got it in, but every time the fluids were turned on she cried in pain. They ended up taking it out so now she has no IV to give her pain meds through. She is understandably frustrated and ready for this hospital admission to end!

Another surgery

Just a quick update on Kaylie!

Today another neurosurgeon came in and said that the protein levels in the spinal fluid were low and that there was no infection, sonthat we could proceed with the shunt surgery. So tomorrow morning she will be getting a CT scan and if everything looks good or hasn't changed she then will go in for another shunt surgery. 

Please pray that the surgeon will get the shunt exactly where it needs to go and that it will work.