Lily

My youngest daughter, Lily, who turned 3 in November has been sick on and off for the past few weeks.  It was a viral infection mainly, and it was being treated, but we were passing it back and forth through the entire family and that kinda made it hard to rid the house of illness.
Alaina, who turned 8 this month, is also still sick, but Christle and I are over it.
We thought Lily had an allergic reaction to the medicine she was taking, so we called the doctor and he prescribed something else.  Her feet started swelling on Monday, as well as a rash that would swell and itch, moving to different parts of her body.  Later on, her hands, elbows, and knees started swelling, and after dinner, she got up to leave the dinner table and apparently had weak knees.  She said they hurt, so we called the doctor.
The doctor said that she should go to the emergency room, because the symptoms didn’t match any that were related to the medicine she was taking.  Christle opted to take her to Texas Children’s Hospital in Houston.  They got there around 8:30pm and didn’t get in to see a doctor until around 5am, even though she was placed on the urgent care list… the emergency room was very busy.  Her swelling didn’t get worse, but it didn’t get a whole lot better.  She was very uncomfortable, though.
During the routine of checking her rash and swelling, they would monitor her pulse.  Over time, they noticed that the rate was in the 50-55 bpm when she was calm.  Now, her rate at this age should be anywhere from 80 – 100.  Now, when they first saw this, the first reaction was that it could possibly mean she had rheumatic fever, which is a virus that could potentially affect the heart.  Blood tests came back negative on that.
After X-rays, and an ultrasound of her heart, they hypothesized that she may have a “Heart Block“.  They put her on a heart monitor and started keeping a record for 24 hours.  During the night, while sleeping good, her heart rate got down to 30.  Dr. Cannon, a cardiologist who specializes in electrophysiology, said that after reviewing the ultrasound and X-rays, said that she has a Third Degree or Complete Heart Block.
Basically, this means that the heart’s electrical signal doesn’t pass from the upper to the lower chambers.  This does not mean that the blood flow or blood vessels are blocked.  Her oxygen levels are good, and there is good flow.  The best guess at this point is that it is congenital heart block.  In other words, she’s had this since birth or even before birth.  The best guess we have right now as to why it hasn’t been detected before is that she was upset any time she was taken to the doctor, so her heart rate would have been high enough to pass as normal.  Anytime a doctor or nurse would come in and start messing with her, her rate would climb up to anywhere from 70 – 85 bpm.
Our current situation is that she will need a pace-maker.  The doctors think the risk of sending her home without one is worse than going through the surgery first.
At her age, they will have to do surgery to actually sew the leads directly on the heart.  We’re not sure if it will be open heart, or endoscopic surgery, yet.  When it comes time to replace it, if the leads come disconnected, or the battery starts to get low, there are less invasive procedures for older children and adults.  She will still lead an active lifestyle, except for certain activities including contact sports… so she wont be able to play football when she gets older.
The surgery has not been scheduled yet, but the doctors are working on the schedule now.  It will probably take place before the end of next week.
I couldn’t explain how we are handling this mentally.  Christle and I are both very upset about it.  On the other hand, though, most people do not detect this problem until they are in their teens.  God has blessed us, in that we stumbled upon the problem early enough to detect and possibly prevent something that could have happened in the future had we not found it now.  With the many illnesses and hardships that happen with children, we are most certainly blessed.
Lily is staying in the cardiology department at Texas Children’s Hospital in Houston.  If you call the hospital, you can ask for volunteer services and they will make out a post card for you to send to her in your name.  She’s already gotten a few and it really makes her day to receive mail.  She does not understand the circumstances, as you can imagine.  I just found this link to do it from their web site.  You’ll need to use her full name, so if you don’t have it, call me or send me an email.
But more importantly, I ask for your prayers.  First, I ask for your prayers for Lily, that she would either be completely healed or have a flawless surgery and quick healing from the surgery.  Secondly, I ask that you pray for my wife, Christle.  I ask that you also pray for Alaina.  She is aware of the circumstances, and even though she doesn’t fully understand the situation, she’s scared for her little sister.  She can’t be there right now because she’s been sick, and we don’t want to risk getting Lily sick before surgery.  Please pray for my parents and Christle’s parents, because I know they feel as helpless as we do.  Pray for me.  I’m barely holding it together right now, and I want to be wholly available for the rest of my family to depend on.
Thank you in advance for your prayers…

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