April 30th 2010

THANK YOU JESUS!!!!   My daughter EJ who is 15 months younger than Lindsey was tested NEGATIVE for Long QT Syndrome!   Our entire family was relieved! I don't think I've cried that hard in a while!   We are very excited that sports will not be taken away from her and we can cheer her on in whatever she decides to do. 
 Although the road to now has been extremely hard, we are very thankful and blessed for the situation we are in. We now have the ability to touch many people and raise awareness for Long QT Syndrome!

April 27th 2010

Well once again Lindsey has made my heart stop!!!!! The school nurse called today and said " Lindsey is ok, BUT, we had a lil accident....she was hit in the ICD with a basketball flying through the gym".   HOLY COW!   Lindsey refused to go home. She said she was just scared.    We ran a carelink report and all was well...no broken leads or arythmias for Lindsey.  As for me not so sure!!!   What am I gonna do when she starts driving?  That's it we are fitting for full football pads!   Sorry Poohcat. I will try to find some in pink! 
  

Friday March 5th 2010!

A bundle of nerves is what I am!!!!! Not so much for Lindsey!   How is that possible that SHE is the one having surgery and all I have to do is wait and I'm the "basket case"!? She was even joking with the nurses about which arm would be best for her IV due to her "pesky" Meth habit that her mom made her stop.  CRAZY GIRL! She asked her Dr. if he had his coffee? And would he please make sure he finished it first!

 Kendra at Cook Children's in Ft. Worth was awesome!  She showed us where we would be before ,during and after surgery.  She called me every 30 min or so to let me know how things were going and exactly what was being done.  Lindsey's device only has one lead wire. It is a Pacemaker/defibulator combo ~ after it was placed they did a test. Her deviced recognized a slow rythym and paced the way it should. Then they put her in V-fib and it recognized that and shocked her at the lowest setting. She did very well after surgery, giving us many laughs as she was "drunk" on Morphine. GOOD TIMES ON VIDEO TO BE USED LATER! :-)

We went home on Sat March 6th 2010! She is resting well and has very little pain!
Thank you Jesus!

   

1 WEEK!

Lindsey having surgery one week from today! Lord, please bless the doctor's hands! Let them feel your love through Lindsey!  I thank you all for the prayers and thoughts. Lindsey does read them and it truely makes her smile! 

Where "Poohcat" comes from

When Lindsey was a baby we always refered to Lindsey Pooh. My Dad started calling her the Poohcat!

Our journey to LQTS

It all started at the beginning of 6th grade ( 2 years ago). I took Lindsey and her sister EJ shopping for school clothes. We were starting a new school district and things were hectic after moving. I decided to hit one store of their choice to get everything we needed. As both girls were making piles to try on, I noticed Lindsey slowing down. Not too long went by and I saw her just sitting on a bench. I asked her what was wrong and she said " Mom, I don't feel good. I'm shaky". It had been a while since we ate, so I asked the clerk to hold our things so we could get a bite to eat. Even after eating it took Lindsey about 45 min to feel better. AND BACK TO SHOPPING WE WENT!

A few weeks passed and another situation with the "shakes" and so on. It seemed as if they were coming more frequent. There were times Lindsey went to the nurse for juice and seemed to feel better.

During this time we were also in competative cheer. Lindsey started to complain of shortness of breath. I took her to her pedi and he tested her for diabetes and checked into asthma. Diabetes =negative and Asthma= excersize induced!  Ok so we pressed on with rescue inhaler in hand.

During all this Lindsey never missed a competition or practice. She did not want to let her team down.

With a negative diabetes test, we were told  she was probably hypoglycemic. She learned to make sure she ate (at least semi-healthy foods). She did not like the feeling that was brought on by this so  she was learning to watch it as close as possible. She just knew this is what she had to do. 

Fainting episodes were not happening for a while and Lindsey was very active in volleyball, cheer, track, and starting Softball.  Our family is active year round. We have a rock crawler jeep, we go to the lake and tube and ride horses. Lindsey enjoys all of these activities. So in the words of Snoop Dog we will "just chill to the next EPISODE"

Eighth grade year was a turning point~  Numerous fainting spells even at rest.   I took her to a Dr in a nearby town and he tols us on numerous occasions that it wasx Vaso Vagal Syncope and DRAMA induced!  After a few other episodes we returned with my gut feeling something was not right with Lindsey's health. Still same DRAMA QUEEN diagnosis!   On our last visit to this doctor he said "well, I guess I will order blood work if that will make you feel better".  Finally I thought we might get an answer. That was a friday.  The next week the school called and said Lindsey had fainted and hit her head.  I in a panic put her in the car and took her to Ft. Worth.  ER doc that saw got the whole story from the last two years and I begged him to find out what the problem was. Her bp was 163/114 !

He ordered all kinds of blood work, head CT, and EKG.   
Blood work was good. Head CT was good. However there was a abnomality on her EKG. He refered us to a Cardiologist. We were in his office in two days. Stress test was done, EKG, and Echocardiogram.   We watched as her bp went from 92 to 175 within 2 min.  Her QT was 497 at that time.    I was told 440 or less was normal.  They explained to me that they had reason to test her for Long QT syndrome. He told me not to get on the internet and read horrible stories. Surprisingly I did not! We had to wait for insurance to approve a 5000.00 DNA test.  Four days after her stress test she fainted at school and was unresponsive for 10 MINUTES! She was taken by ambulance to a local hospital and they told us she was ok and even read the wrong numbers off the ekg to Dr. Gillette. I was told to take her home and let her rest. I took a copy of the EKG to Dr. Gillette the day we had blood work for the Famillion dna test through PGX Health.  The next monday I get a call from work from the DRAMA doctor  and this is what he had to say......." What are you gomg to do when you find out there is nothing wrong with her? I think this is drama and you are wasting your money for all these tests that are being ordered. When you can't put food on your table because of this drama then counseling and benign attention will do the trick for her."   ARE YOU KIDDING ME???!!!!!

Needless to say when the results came back positive for Long QT he was left a not so lady like message. And of course has never replied! This man has girls also and is very well known in the community. 

When her results did come back...that's when I started researching this MADNESS. I was a basketcase!
No one knows about this around us! I now keep a binder in my car with extra copies from http://www.sads.org/ explaining this condition and what meds she can not have. Each day is a new struggle for our family to ROLL with Long QT!

Feb 22nd 2010

Lindsey met her NEW PCP today. She was running fever all night last night. She came to me about 7:30 pm and said "I just don't feel good".  Still running fever this am so off we went to tell this crazy story to a new DR.  Turns out she has a sinus infection. We are on antibiotics especially this close to surgery! I am so blessed to have the awesome "work" family that I do. They are behind us 100 % with prayers and understanding. Thank you so much Sherman Family Dentistry staff and Dr. Collins and Amy for your support!  To everyone who reads our blog and prays for my Lindsey......THANK YOU FROM THE BOTTOM OF OUR HEARTS!   Thank you to the WMS staff for going above and beyond for Lindsey to keep her safe and up to date on her studies!   Michael and I truely appreciate the prayers and thoughts for Lindsey!

Feb 15th 2010

Met with the surgeon today about placing ICD for Lindsey. He calmed my nerves a bit. I had my list of questions ready! He handed the ICD like the one he will use to Lindsey to hold and feel for herself. Her implant will only have one lead and is about 3 x 3 inches. I was very impressed with him because he addressed Lindsey and walked her through the surgery and answered all of her questions first. He did not sugar coat anything for her. Once again her spirit and faith AMAZE me. We are scheduled for March 5th in the am. This Long QT "madness" still baffles me. Some days I am used to it and others I find myself just dazed as to "why", and how did we ever get to this point? No longer are our lives just laid back with no worries. Not that they were worry free before but.......        At least then I didn't worry if she wanted to stay at a friends house. I find myself watching her sleep and holding my breath in the mornings waking her up. It almost consumes my whole day and thoughts. She, on the other hand seems to have it all together. How is it that I was blessed with a child that is wise beyond MY years?  Thank you Lord for my precious gift "My Love...My Life...My Lindsey!!!

ICD!

After Lindsey had her episode last week. We have set an apt for consult with the surgeon on monday and surgery to place ICD on March 5th...sigh....   This is a very big decision! Our Poohcat Lindsey has stated numerous times, "what is there to discuss?"   I want her to be aware of ALL the bad and good of having an ICD placed. She feels like it will protect her and give her some sort of life in the future.  Apparently she does not like her new "HOVERING" mother! ;-)    I can't blame her a bit.   ICD's in kids are unpredictable and they can have numerous complications. Leads can become fractured and cause shocks that she might not need! Infection is a big risk... My stomach is in knots. I have to be sure this is the right thing to do for MY LINDSEY.  I can not imagine life with out her and her vibrant smile and even the way she rolls her eyes.   I wish I could wave a magic wand to assure her nothing will go wrong. She is a very smart girl and I feel she needs to be involved in this decision.  Please pray that EVERYTHING goes well.  We need prayers for peace and understanding!  

Another Episode!

Today was crazy SCARY! I got a call at work that Lindsey was down at school! All staff involved at WMS you are angels! They were very quick to respond and thank God the ambulance was already in town!  She went to TMC and they were good to respond to our needs, although I had to educate a bit on LONG QT. Dr. Gillette was called quickly and due to her not having anything ACUTE at that time he was on the phone and she was starting to feel better that I could take her home! Relieved, but scared we went home.  Dr. Gillette later called and mentioned about a LOOP RECORDER or a ICD as a next step.We will now see a doctor he worked with in Ft. Worth. I truely do not understand how families live lke this. It seems like everyday I thank God for getting Lindsey through the night and then I'm thanking him for getting her through that day. Today, I found myself begging God to not take MY LINDSEY!  I pray that we get on a manageable path with this. Lindsey has to get her life back to some kind of normal. What was weird is that we just finished a round with a 24hr monitor last night before she went to bed!    

A loop recorder only records what is going on- It will not save her life.  A ICD will deliver a shock if needed.to save her life.  The parent in me says just get the ICD to begin with!  I am pulling from all the resources I have for advise.   Father GOD I PRAY YOU WILL GIVE US A ANSWER FOR THE BEST TREATMENT FOR LINDSEY.  LORD, LINDSEY WAS DEDICATED IN YOUR CHURCH AND WASHED IN YOUR BLOOD! THANK YOU FOR YOUR BLESSINGS AND THANK YOU FOR GIVING ME A AWESOME GIFT ~ LINDSEY!

The last 2 weeks Lindsey has been experiencing palpitations so bad at times that they are waking her up at night. We are waiting on a 24 hour heart monitor to come so we can see what is going on. This is hard because she is not getting very much rest. And as a mom it is scary because it is all out of my control!  Saying prayers daily!    Brandy

Jan 15th 2010

Follow up with  Dr. Gillette today.....went well. Lindsey has been on Propanolol 60mg 1 x daily for 15 days now. She is very tired and "crabby" at times. Dr. Gillette stated that the Beta Blocker seems to be working. Lindsey still had Long QT intervals around 455-460 but these are down from before with numbers as high as 498.  I've heard of kids with much worse, so we are praising GOD!!!  They did say she was able to sideline cheer/chant. But, no tumbling or anything else that Lindsey wants to do! I thought it was interesting that he said ABSOLUTELY NO TRAMPOLINES! Lindsey did not like that at all. I think she thought that would be the only way she could tumble. He did give us a script for a home defibulator to carry with us.  Those of you who know us...nothing in our lives are boring. 
 If I have to tattoo LQTS on my forehead everyone I come in contact with will know the warning signs of Long QT Syndrome.  In the words of a very good friend we are gonna " ROLL WITH OUR CHINS UP"
   

Getting it all together

Please be patient with this blog as I am working on a long blog of the last 2 years of how we came to this diagnosis!

The "Diagnosis"

Bitter Sweet Day!

12/31/09

This morning I got the call that test results we have been waiting on are in... Dr. Gillette stated that tests were positive for LONG QT SYNDROME TYPE 1

Although, this was not good news, it is nice to KNOW what we have NOT known for the last TWO years!

My daughter Lindsey is to be on Beta Blockers DAILY for the rest of her life and NO SPORTS...

I decided not to tell Lindsey on New Years Eve. I did not want to ruin a good evening for her.

After crying and many questions to God..."WHY MY CHILD" , I decided to "ROLL" with it.

This day was bitter sweet because, at midnight with friends and one of my sisters present, I got a PROPOSAL!!!! AND HE DID GOOD!

My ring is beautiful and all three girls are excited!