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. 

Update on Kaylie

Today we have been presented with another change of plans. Kaylie was supposed to have a new shunt put in tomorrow, but there is still too much blood in her spinal fluid from all the previous surgeries. She has also spiked a 103 temp this afternoon. Those two things together, along with the fact that her neurosurgeon is leaving the state Wednesday, mean surgery will have to wait until mid to late next week. 

While we are kinda bummed about having to wait so long, there are some benefits. If they rush the surgery and put the shunt in while there is blood in the fluid, they risk another malfunction/blockage and we start over yet again. If they wait until her fluid is nice and clear it gives a better chance for a properly functioning shunt, and we can begin the healing process.

Of course we know our Great Physician can give the "miraculous"ly (to use the medical assistant's word) clear spinal fluid and no fever overnight. We are simply watching and waiting on His timing. 

Latest update

We met with the surgeon and discussed a game plan!

They are taking Kaylie now to surgery to take out the shunt that is in right now. Then they will put in an external drain. The importance right now is to stop the leaking. If fluid is coming out then bacteria can get in, so that is priority 1.

They will take a culture of her fluid today and tomorrow to see if there is an infection. The surgeon is not expecting to find an infection, but wants to make sure! If there is an infection then they will treat for that first before moving on.

The plan then would be on Tuesday to go into surgery to put in a  new shunt through her aorta. They will do this through a computer generated procedure. This will be done through the top of her head through brain matter that was left on her right side and into the aorta.

We appreciate all the prayers that have been made on behalf of Kaylie and the doctors. We are continuing to trust God through all of this and know that "His ways are not our ways." 

Will keep you updated as new information is available.

Surgery is complete

The surgeon just came out, he's done. Found a loose knot but nothing as obstructive as they expected to find. He hopes this is it but still no guarantee. 

Surgery

They took Kaylie back about 17 minutes ago. This is a verse that is on the wall in the waiting room:

The Lord always knows how to speak to us! What an encouraging passage of scripture!

Surgery time

Surgery is set for 8pm tonight! Will give another update as we get new information.

Surgery tonight

Kaylie will have the surgery tonight sometime, probably between 6-8 tonight!

Thank you for your prayers!

Stomach surgery

Well, the doctor said the problem is at the end in the stomach area. When he did the revision yesterday it worked fine and flushed. So, the problem is down at the end in the stomach area. 

He has called another doctor, who specializes in this area and he will perform the surgery. The surgery will either be tonight or tomorrow morning depending on the surgeons schedule!

Kaylie seems to be ok for now, it took a lot of medicine to take the pain away! If she complains it means it "hurts!"

Please continue to pray for Kaylie and the doctors! Also pray for our family this is taking a toll on all of us!

Shunt revision doesn't seem to be working

Kaylie has been complaining her head hurts! They gave her hydromorphone and it hasn't touched the pain. They just gave her Tylenol with morphine to see if that helps. She has also leaked a little again. Waiting to see the doctor and see what he says. Doesn't look like the shunt revision is working!

Please be praying!

7

She has a 7 on the back of her head now. Isn't that the number of completion?! This is the 7th surgery!

Update on 2nd shunt surgery

Just met with the neurosurgeon said ideal placement is in the ventricle but couldn't get there without causing a hemorrhage. Had to put it in empty space again and hope it works this time! If there is any more trouble they will work on the end in her stomach, or have to try a new entry at the top of her head and go through brain matter.

Please continue to pray!

Kaylie is set for her second shunt surgery this morning at 9am.

Thank you for your continued support and prayers!

More bumps in the road

It looks like Kaylie's shunt has already stopped working. Another CT scan whenever they can get her in, and tomorrow we will have another surgery for a "shunt revision". Basically she gets to do today all over again. 

Speed Bumps

We are waiting for surgery to happen some time this morning. Kaylie's CT scan shows signs of hydrocephalus even though she doesn't act like anything is wrong. We were hoping she wouldn't need a shunt because it's a life-long commitment. We will have to watch for signs of malfunction for the rest of her life, which also means there will be additional surgeries in her future to fix it. Now we pray for the shunt to have a "long life" with no malfunctions. 

"As for God, his way is perfect: the word of the LORD is tried: he is a buckler to all those that trust in him." Psalm 18:30

Here are a few pictures from the last few days:

THANK YOU FOR YOUR CONTINUED PRAYERS!

Rehab going well

Kaylie is doing well in therapy. She is continuing to get stronger and stronger. They are having her to walk across the room and she is starting to move her left leg instead of them sliding it. 

There is some slight drop foot or weakness and they want to prevent that and so they put her in a cast and brace and will take it off tomorrow sometime.

There has also been some leaking from where they did the surgery. A sample was taken and sent off for a test. It is possible that it is spinal fluid that is leaking out, which would complicate things. Dr. Lee in Orlando has been contacted but he has not gotten back with the doctors here. Please continue to pray that it is nothing serious! LeAnne has been watching for anything else that may cause for concern.

We appreciate your prayers! God has been so good and continues to give us all strength during this time!

Rehab: One week down

Kaylie has almost completed a full week of therapy. People weren't kidding when they said Brooks Rehab is intense! She starts early in the morning and gets about 3.5 hours of therapy each day Monday - Friday. Every day she gets a little stronger. She is now able to sit up alone, stand with help, and take steps if someone moves her left foot for her. Of course she protests anything and everything the therapists tell her to do. She requires a lot of prodding! 

Yesterday I took Paul and Megan to see Kaylie and we were able to spend the night in her room. It wasn't exactly comfy, but so worth it for our family to all be together for a night. We went to the pond and fed the ducks some popcorn and hamburger buns. As we handed Kaylie pieces to throw in the water, we caught her sticking them in her own mouth. Poor girl has no "full valve" because of the steroids and she thinks about food non-stop. 

We got an answer to prayer yesterday when she started moving her arm! She now has movement of her shoulder and elbow; now we watch for movement in her wrist and hopefully her hand. They put her arm in a stimulator for a few minutes each day and remotely make her hand open and close. They were very excited to get movement the first time they tried it and said it doesn't work for a lot of people. It's a good sign that the "connection" from brain to hand could come back and the muscles still work. She could possibly regain some use of her left hand, and that's something the doctors said wouldn't happen...it's the miracle and answer to prayer we hope for!

Right now her target discharge date is the 29th. That could move to an earlier or later date, depending on her progress. 

Thank you for your prayers!

Brooks Rehab Hospital

Praise the Lord, Kaylie has made it to rehab! The took her by non emergency transport on Monday afternoon. LeAnne will be staying with Kaylie 24/7 during her stay there at Brooks Rehab.

Today she met all of her therapists and was evaluated. They are wanting to see what her base line is and then determine the plan of action. LeAnne will get a report either tomorrow or Thursday on how long they think she will need to be there. Nothing is set in stone and is all dependent on how well or bad she does each week. LeAnne will get that report every week.

Please continue to pray that Kaylie will get stronger on her left side and that she will be able to walk soon. Pray that she does well with the therapist.

We appreciate your continued prayers for our entire family during this time!

Thank you for praying! We thank The Lord for how He has worked in Kaylie's life! 

He are a few pics of her at rehab:

Now a few pics with her cousin who was excited to see her!

The weekend

Today is our last day in the hospital! After four whole weeks we are more than ready for home. I have to say, though, that a lot of those helping us with Kaylie's care throughout this journey now seem like part of the family. Florida Hospital for Children has done a great job making this experience as easy as possible. 

Kaylie has been on a steroid for the past several days to correct the cause of the fever. It has done its job -no fever at all today and yesterday was only 99- but apparently one side effect is increased appetite. Increased is an understatement! The poor girl eats until she's about to pop then asks for more! She can afford to put some meat on her bones though. 

Tomorrow begins the next chapter: rehab. I've heard Brooks is the best. I've also heard they are "intense" and "push" their patients, so prayers are appreciated...for the therapists. 😀 Seriously though, Kaylie needs to be "pushed" at this point. But she can be very stubborn and requires a lot of patience and animation to get her to do something she doesn't want to do. Lord willing, and with His help and strength, she should get to go home before the end of the month. 

Prayer Request

Kaylie had another good night, no fevers. The steroid has worked, other than make her more moody and hungry.

Just met with the doctors and they said there is no need to keep her here. From a medical stand point she is good. The worker will call Brooks Rehab hospital to see if they could take her today instead of Monday. This would be good news, we could start with therapy earlier than planned. 

If there are no beds available till Monday, then we will go then. Appreciate your prayers! The sooner we get to therapy the sooner we get to be at home again.

Just four more days in the hospital!

Yesterday a representative from Brooks Rehab in Jacksonville sat down with us and talked a little about their services. It looks like Kaylie will be transported there on Monday, and the plan is to be ready to go home in 3-4 weeks. When she moves to rehab I will get Paul and Megan and go home. I think all of us are ready for our own beds!

Yesterday Kaylie also had the CSF drain taken out of her head. Let's just say she's one tough cookie! Now we pray that she is able to handle the extra spinal fluid on her own. We have to watch for signs of hydrocephalus for another year to make sure she doesn't need a shunt. 

Today she was given "lobby privileges" so we were able to take her out of the room in a wheelchair. We went out to the lake and then through the garden to enjoy some sunshine and fresh air. It was a nice break...she's been quite moody since they started her on steroids for her fever. 

She's got talent!

Finally got to take a ride for the fun of it...not for a scan or to the OR this time. She got lots of cheers (and laughs) as she made the loop around the unit and called everyone by their assigned nicknames.

The neurologist and his team came in later and they were very pleased with her progress. It seems as though the fever is not from any infection, but probably just her body's response to the surgery. So they stopped IV fluids yesterday and antibiotics today. The only thing that's attached to her now is the drain from her head...and it's clamped off to hopefully come out tomorrow!

Thanks again for all the prayers. Kaylie is in good spirits and is determined to use her left hand...even if she has to lift it with her right hand to do so. 😄 I am so excited that she doesn't need a shunt so far. That will be a long-term prayer request as the need could arise even a year from now. Oh and no seizures in the last five days since surgery...the longest break she has had in over two years!!!