"Thumping"

Taylor is now 11 weeks out and on June 6th, which is about 10 weeks out from surgery, Taylor started "thumping". Basically, Taylor can feel her heart beat very strongly in her chest and sometimes in her belly. Being this happened on a Saturday; we had a hard time getting a hold of people to help. Since Tallahassee doesn't have a BOARD CERTIFIED PEDIATRIC CARDIOLOGIST, I rely on Shands to help in these situations. I emailed all the doctors a video of what it was doing so they could kind of see it. Dr. Fricker responded pretty quick but it still took till 10:30 pm to finally talk to someone. As you can I was very concerned even though Taylor didn't act as if it was bothering her, it just got her attention every time it happened.

Monday, June 8th, we went to Jacksonville for them to see it. Of course it didn't happen on its own. They started questioning if Taylor was around magnets, new electronics, or anything else that could have made the pacer setting change. Once they hooked her up they could make the "thumping" happen and realized the pacer settings hadn't changed and after several hours of being there they came to the conclusion that it "might be the leads". So it was either a magnet, the leads, or the pacemaker had an electrical leak but they wouldn't know for sure unless they went in to see. All 3 conclusions was in a matter of an hour and 1/2. Talk about being confused!

They hooked her up to a heart monitor for 24 hours to see if it is affecting her heart when it happens. I automatically thought that it wouldn't do anything because it’s being watched. I was wrong. It happened 7 times in the 24 hour period. I shipped it back to them the next day but when I got a phone call and they said that the battery in the monitor was no good and it didn't capture and all I could say was..."ARE YOU KIDDING ME?"

My next step was emailing them and I mean it was all day of emailing. In the first email back from the doctors it said that Taylor's leads aren't bad enough for surgery but aren't good enough to bring down the pacer settings to save energy. Then the last email from them was that we will talk more about it in clinic on June 17th but they would see about adjusting the thresholds of the pacer. That last email confused me because in the first email he said they couldn't adjust the settings. UGH!

Finally, Dr. Fricker called me and we talked for a while. I expressed my concerns and my worries. It made me feel a little better but not really. I know he cares and loves her like he does with all of his heart kids but we could be looking at another surgery that would be completely unnecessary if the leads would have been changed out this last time. Dr. Fricker said that it was the connection of the leads on Taylor's heart that was causing the problem, which makes me even more worried. This was an overnight change with the connection and what will happen if there is another overnight change? We went to Boston in May 2008 and their suggestion was to move the pacer under her arm which would have meant the leads would need to be replaced. Jacksonville didn't think that needed to be done but up until an hour before surgery we thought they were doing what Boston had suggested!

So tomorrow is our appointment and I am worried, anxious, nervous, scared, relieved and so many more mixed emotions. I haven't been able to think clearly since this began. I know they will say she is fine and it isn't affecting her, but is it? Maybe not physically but it has to mentally. She is being reminded everyday several times a day that she is a heart kid and feeling "thumping" isn't a way that any kid should live. While she is a camp she is writing down the time and what she is doing when she feels the thumping. The poor little girl. I hope tomorrow will give us more of an insight. I have also contacted Boston to get their input on things so I will be very interested to see what they have to say also.

I will update as soon as I know something.

Getting Back to Normal

Wow its hard to believe our life is getting back to normal after Taylor's 3 weeks out of school! It makes me realize what we take for granted when things aren't "normal". Taylor got her cast off last Friday and Robin has been working with her to get movement back into arm. Taylor has been doing good at school and she has been wearing an ace bandage while she is there.

Thank you to everyone who has been praying for her! Prayers really do work!!!!!

6th Pacemaker

Taylor's 6th pacemaker procedure was on March 30, 2009. Our day started out long as of course she couldn't eat and Robin and I both didn't eat because it wasn't fair to her. We got to the hospital and things were going pretty good until they tried to put an IV in. They blew 2 veins in a matter of minutes and Taylor was SCREAMING because it hurt so badly. Luckily Dr. Bryant came in and told the nurse that they could just put an IV in her hand once she got to the cath lab. What huge relief! Then to our surprise we got to walk down to the cath lab with Taylor. She got to pick one parent to go in the cath lab with her until she went to sleep. Of course the little girl chose her daddy! Robin had to put a mask and hat on when he entered the room and he stood by her bed and held her hand while she went to sleep. Robin and I were crushed to see her on a table for the 10th time in her 7 years of life.


A couple of hours later we went up to her room and as they brought her to her room, she was in pain. Nothing hurts more than to see your child and pain and there is nothing you can do. It crushed me but I had to continue tell her that it was going to be ok. It kills me that knowing this child just had surgery; they don't bother giving pain medicine until they are awake and crying. If Taylor was any other kid we would have gotten to go home but because Taylor has a history of infections we had to stay over night so she could get 4 doses of IV antibiotics.

The next morning was quite eventful! At 8 am, Taylor was getting an EKG and Dr. Bryant was waiting for her down in the echo room so he could do an echo and check her pacemaker. By 10 o'clock we were on our way home! Yay! I was so relieved that we finally had a pacemaker put in and we had no problems.

I was relieved too soon! Today we are headed back to Jacksonville for them to drain a fluid sac that has formed at her pacemaker pocket. The poor baby! She was in the bathroom crying and was asking why bad things always had to happen to her! I just wanted to cry!

I will update everyone once they drain the sac. My question is…can that fluid turn into an infection?

Pink Cast!!!

Taylor got her cast on Friday, as you can see! She did great during the x-rays. We got to see the pins that are coming out of her arm and she didn't like that too much. She didn't want to look but yet kept looking. Thats my crazy blonde headed kid! I emailed the doctors at Shands to see if we could still have surgery on Monday and they said we were good. That's a relief because I didn't want to have to prepare myself for surgery again.

We leave tomorrow for Jacksonville to go to the Zoo with Aunt Becca and Logan! We are very excited about spending some quality time with the two of them.

Broken Elbow???

Ok, so as if we didn't have enough on our plate already, Taylor broke her elbow! Robin and Taylor were outside while I was inside working. She was climbing down her ladder on her swing set when her foot got stuck and fell backwards. Robin said he heard, "Daddy, Ouch!!!" He thought that maybe a bee stung her but as he got closer she told him, "Daddy, I can't move my arm!" He saw how her arm was laying, scooped her up, and about that time I opened the back door to see what was going on. As a mom you know the cries of your child when they are seriously hurt, and I didn't hear that. She didn't cry until Robin and I were talking about her arm being broken or dislocated. We rushed her to the new TMH Urgent Care facility and they were great! We got into a room, saw a nurse, and had x-rays, saw a doctor, and were headed over to TMH ER within a little over an hour.


Once we got to the ER our experience went down hill significantly and each experience kept getting worse. Her ER nurse was a WITCH! There was Robin, me, and my parents in Taylor's room and the nurse told us that only 2 people were allowed in her room, but 4 doors down there were 7 people in another room. What's wrong with our 4 people?? She said something again and Robin got mad. He told her, "You’ll be fine. Don’t worry about us!" Finally the witch comes back into the room and as she is about to put an IV in Taylor and she asks, "She isn't on any medication is she?" Of course my first words were, "YES!!! SHE IS A HEART KID". I wonder what the point of filling out the paper work with "LIST MEDICATIONS" is for??? If they don't read it, what is the point of writing it. Dr. Rolle came in and he had just learned that Taylor was a heart kid and so I called Dr. Fricker. They talked and Dr. Rolle had someone come check Taylor's pacemaker to make sure the settings would be good for surgery. While we waited for her to go to the Operating Room, Rebecca came and sat with us for several hours. Then Misty came and relieved Rebecca so she could go home get some rest so she could take care of that sweet baby the next day! It's always nice to have a 3rd person with you.


Finally at 11:30 pm, we were headed down to the OR where we had an anesthesiologist asking questions about Taylor's heart defects but was being a smartass about it. Misty and Robin were ready to slap him because of the way he was talking to me. Anyway, they finally took her into surgery at 12:00 and 45 minutes later they were done! They put 2 screws in her arm and bandaged her up with a temporary cast. Robin, Misty, and I were in the recovery area waiting for Taylor to wake up some and noticed that Taylor still had on her clothes that we came to the hospital in! Call me crazy but isn't an OR suppose to be sterile?


After we got to our room (2213), Robin was about to leave when the Tech Nurse noticed a bug crawling on the wall. She killed it and went on her way to another room. Well I went into the bathroom and saw 2 roaches, and immediately got Robin in there so he could kill them. As it turns out there were more than 2 roaches! They were in the shower curtain, on the sink, and on the walls! IT WAS GROSS! Robin went and got the nurse and said that room wasn't going to work and we needed another room. In a matter of 10 minutes or so we were going to another room. Taylor got to go home Saturday around 3:30 after she took the last of her antibiotics.


It's been 6 days and Taylor is doing great! Each day she has adjusted to using her left arm instead of her right. She is such an amazing little girl!

Heart Medicines

Taylor is growing up so fast! Taylor has always taken medicine for her heart ever since she was a baby. In the begining I worried that Taylor thought she was weird for having to take heart medicine and none of the other kids at her school don't have to. I have found that I am actually thankful that she doesn't know any difference because I know some parents struggle with their kids taken medicine. Taylor takes her medicine like a champ; she has swollowed pills since she was 4. I'm 31 and I have a hard time swollowing pills.

Since our last appointment at Shands, Nurse Connie, asked that Taylor learn her medicines for camp this year. So of course in less than a week she learned what medicines she takes and when she takes them. Here lately in the mornings I have told her to get her medicines ready before she leaves for school. Taylor gets a dining room chair and slides it over to the kitchen cabinets, climbs on the chair, opens up the cabinets, and pulls out the bottles that she thinks are the medicines that she takes. I have to say she does a great job! She pulls out all 4 bottles and tries to open them of course they are child proof. As I lay the pills out for her she is taking them. She is great!

Our mornings this week have been great because she has asked me to take her to school. Its nice to sing with her in the car and watch her dance to the music. She is so my kid!

Have a great day!!!