LONG Transplant Update and Another Tooth Gone!

My stress level is insane right now,  Between insurance, doctors, setting up infusions and getting this transplant approved, I think I'm losing my mind.  Deep breaths. 

I haven't heard from Boston yet, but I did call and leave a message for the cardio.  I'm sure they are just being thorough.  Or they are just busy being the best cardiac center in the nation.

In the meantime...

I got a call from LPCH and the heart transplant is approved through our primary insurance, which is great news!  The issue we have is with getting air transport covered from Phoenix.  The medical director (at the insurance company) denied it saying it was not necessary as getting to the donor hospital at time of transplant is not an emergent situation.  Really?  They continued on in their denial to say that it is in the patients best interest to wait at the RMH for the organ transplant because they are receiving desensitization treatments (or IVIG). 

This is totally a bad judgement call and I say bring it on!  Owen isn't even having his desensitization treatments done at LPCH, they are doing those at Phoenix Childrens.  Anyway.  I called to speak with the medical director today and apparently this person can't speak to patients.  Of course he cant.  I mentioned another heart mom that is in the exact same situation, going to the exact same hospital, for the exact same treatment, with the exact same insurance and they were approved by the medical director for air transport at time of transplant!  The response from the RN at the insurance was that the medical director doesn't make these decisions based on insurance coverage, but more on the best interest of the patient. 

Back at LPCH, the transplant coordinator is working with Owen's secondary insurance to get air transport approved.  If we get a denial, then we go back to the primary and I will fight with all my might to get this covered.  We could be waiting months, even years, for a heart as a status 2.  How is it in the child's best interest to be separated from his family, not receiving his early intervention therapies and living the only life he knows??  Insanity is what it is!  Sorry.. totally had to get that off my chest. 

We should have a final response on Tuesday regarding insurance coverage. 



We are also working on getting the IVIG treatments approved through insurance.  We would prefer to do these infusions at LPCH for many reasons, but since he needs them every two weeks, we can't afford that kind of travel back and forth.  So, we are settled in on doing them at Phoenix Children's.  I spoke with Owen's cardio on Monday regarding these infusions and we talked about the process involved. 

I received a call today that another nurse took over Owen's case and will be setting up all the treatments.  There is no short stay/infusion unit at Phoenix Children's so we will have to be admitted to the hospital.  The IVIG will run via IV for 12 hours and we will titrate up to his full dose.  These will be LONG days in the hospital and I am dreading them.  Owen had several IVIG treatments when he was 13 months old and there was so much wasted time in the hospital.  By the time you get admitted, hooked up to machines, the IV team gets things started and then Pharmacy has to deliver the Plasma.  Then it's 12 hours of infusions, then discharge.  Owen has no idea what's about to hit him, but we better get ready. 

We start IVIG on Wednesday! 

I got the call from the scheduler in cardio and she said we will get a call from 8am to 7pm on Wednesday.  That is the longest window and so I am just blocking out my whole day.  She originally mentioned we would be put in the "telemetry unit" which is the cardiac unit for sick kids.  I refused because we need to keep him healthy... which seems obvious. 

I just got off the phone with our NP at LPCH and she said they officially listed Owen as a status 7, which is inactive status until we get the final air transport approval.  Then we will bump him up the list to a Status 2 and things will be finally happening.  I am so nervous, scared and my anxiety is ridiculous. 

On a much lighter note and SO exciting.. Owen LOST ANOTHER TOOTH!!!! It was hanging by a thread for the past month and Daddy finally got it out!  Owen is so excited for the tooth fairy to show up tonight.  It's the little normal things that keep me going and staying positive. 

I'm sure I will have tons of news next week to update.  Here we go.  The next road in the CHD journey is about to begin!!!