Broken Heart

I was scheduled to return to the cardiologist this afternoon to get the  results of my 3-day monitor.  I was meeting with the electrophysiologist this time- the electrican of the cardiology department.  We had just finished eating breakfast when the office called to say he had an emergency and needed to fly out this afternoon.  Could I please come right now? Sure... by now, how soon do you mean? By the time I showered dressed the kids, secured earlier babysitting, and got everyone out, "now" was more like an hour.

The nurse came in and did another EKG, not sure why, how many of these does one person need in a month? When the doctor came in he clearly was not familiar with my case.  Frustrating.  He took a quick history and asked when I was scheduled to wear a monitor.  That's why I'm here.  To hear your interpretation of those results! So, he proceeded to review it right there.  This is going to take longer than I thought.  He did seem to have a good grasp of the situation.  For those of you not familiar here is the short history...

I started having episodes of rapid heartrate when I was 16.  A week at Bethesda ruled out a variety of conditions and I was diagnosed with SVT (supraventricular tachycardia).  I did not require treatment until I was 25 and started having dozens of episodes a day.  I was put on beta blockers and things have been going along great for the past decade.  I was diagnosed with Graves disease 2 years ago and had my thyroid removed.  They just regulated my thyroid med levels this past winter and in the spring I started feeling really sick.  It was determined my beta blockers were now toxic to my body.  No one knows why this happened and I was weaned off them.  I felt better for a few seeks, then the SVT started back.  So now, it's time to talk ablation surgery to try and cure this condition for good.  To make that decision, I was put on a heart monitor to attempt to capture the cardiac events. 

When he looked over the heart monitor readings, he said it confirmed the ventricular tachycardia and was definitely a candidate for ablation surgery.  It is done as a catheter procedure.  They thread their instruments through both the groin arteries and neck if necessary.  The heart is then mapped, from an electrical perspective.  The offending nodes are then ablated by laser.  He asked if I wanted to watch a video of the procedure.  Umm... no.  I don't want to remember a bit of it, if you don't mind.

He left and his nurse scheduler came in with her calendar.  She opened it and said, "So, what do your next few weeks look like?"  I started to cry.  They don't know anything about Julia's situation.  I told her about her upcoming tests, appointments, and open-ended questions.  And she started to cry.  So, we went ahead and put a surgery date on the books for September 20th-op on the 14th.  They are waiting to hear back from me after all of Julia's upcoming appointments. I am also considering switching to a different doctor who I have heard many positive things about.  Please pray that we make the right decision about doctors, hospitals, and timing.

The GI Motility department at Brenners' called me back on Monday.  They have Julia scheduled for Monday, August 30th.  The nurse talked to me for a long time about the procedure and Julia's history.  GI had called in a versed prescription for us to give her before the test.  In talking with them yesterday, we determined she likely will not need it.  In the grand scheme of all she has been through, this should not be terribly uncomfortable or upsetting to her.  We are hoping to keep her conscious so they are able to get her feedback on sensations if she chooses to cooperate.

When we got back to the house today after my appointment their was a message from Dr. McMullen's office.  He is Julia's radiation oncologist (Dr. Hot Dog).  Nurse Diane had emailed him last week to get his input about Julia's bowel situation.  He wants to see us asap.  He is probably going to be upset that we did not call him sooner, but I am happy that he is on board at this point.  I have nothing but the utmost respect for his approach, knowledge, and discernment.  He was a strong guiding force in Julia's initial diagnosis and treatment plan.  They had an opening on Thursday, September 2nd.  That is the day of her next chest x-ray, so they told us to come down after that and Dr. McMullen will actually interpret the results for us.  I am eager to hear his input and be able to pick his brain in this situation.  I have complete trust in his skills.  One of our fears is that the outcome will still be vague after the x-ray and we will be forced to make the decision for a CT scan or not.  I would much rather Dr. McMullen make that decision, or at least weigh in heavily.  

After the appointments were all set up, I checked my email and received the devastating news.  Kate, from our Brenner's family has relapsed and is being sent home on hospice.

Two years ago, at the age of 3, Kate was diagnosed with leukemia (ALL).  Treatment was tough on Kate and she suffered many debilitating side effects and infections.  She made it through to maintenance and sadly, last February, was diagnosed with a relapse.  She would need a bone marrow transplant to survive, but she needed to be rid of the cancer cells first.  Her family was offered hospice, but they found out about an experimental drug in Italy- Kate's Italian Kryptonite.  Kate's devoted prayer warriors, her medical team, her wonder drug, and her amazing God got her to transplant at Duke.  On May 18th she received bone marrow from her brother Jarod.  Kate has had a very rough summer, but was one week away from reaching her 100 day mark when the relapse was found.

There is nothing more medicine can offer Kate.  She has been sent home on hospice to be with her family as her condition deteriorates.  Kate is one of 5 children.  This family has faced unimaginable challenges.  Mom, Susan, was pregnant with baby Bella when Kate was diagnosed.  Baby Bella lived on the oncology floor for the first few months of life and for the past year has had to be away from her mother.  The family has been completely torn in two for the past 2 years.  They live in a 1200 square floor house that barely fits their family of seven.  They were one of the final two families considered last year for ABCs Extreme Makeover Home Edition, but the house went to another deserving family.  At the tender age of 5, Kate has already reached her $1 million dollar cap for health insurance and the bills are piling up.  The family is now unable to buy a new home.  Sweet Kate does not even have a bedroom or bed of her own to come home to.  A foundation has been set up to secure a home for this family.  If you feel lead, please help in any way you can.  And please lift up Joe, Susan, Jarod, Parker, Julia Faith, Bella, and princess Kate in prayer.  We believe in God's miracles! We ask that He carry each one of them through each and every moment of the coming days.
   
So my heart is broken, both literally and figuratively.

Thank you for the love, prayers, and support for us and all those we hold dear.