Saturday, December 4, 2010

Gratitude...Mailia's 5 Month Follow Up, Right Heart Cath & Second Stem Cell Transplant

               Mailia and Dr. Carl Garabedian - Nov.2, 2010

November 2, 2010 was a day we had so anticipated.  The night before, Max, Mailia and I ventured up to Spokane, Wa. in rediness for Mailia's right heart cath procedure.  We drove over to Post Falls, Idaho to have dinner at a the HotRod cafe and catch the opening game of the World Series.  The 20 or so LCD's in the place had Monday night football on and Mailia asked if they would let us have one TV to ourselves and put on the game for us.  What a wonderful bunch of folks!  They did and Mailia prayed, she rooted hard for her favorite team...the Giants.

After dinner, desert and most of the game...we ventured back to our hotel adjacent to Sacred Heart Childrens Hospital.  We took Mailia in to the room with her companion Steel Dust to catch the remainder of the game while Max and I fetched Mailia's she never travels light.

She was so happy and ecstatic to see the San Francisco Giants win the first game of the world series, while her dad and I sat there and sulked for the losing Texas team.  I think it is wonderful though, to consider all that we might accomplish when in tune with our heart, we put others so gracious about the game, or an event that brings so much unification and joy to so many, or even activities that galvanize the world through play and good sportsmanship into the mix of possibility.

And on this eve...Mailia has her own game she intends on winning.  I wonder how she will bring her own giant transformations forth?...but we all know, it is time for a Grand Slam rally so to speak.

At 6:00a.m. the following morning, we found ourselves going through the hospitals admissions and getting all or Mailia's vitals and records in order.  We met with nurses and Dr. Garabedian's cath team prior to their taking Mailia, who at the time...was doing a great job of staying clear, calm and focused.  As they came to take her to the catherization lab for her procedure, we accompanied Mailia, stayed close and held her hand until she was anesthetized enough to warrant our dismissal.

Max and I stayed close by in the family waiting area, praying for our Mailia while every 35 minutes or so, someone would pop their head in to tell us she was doing okay.  Finally, we met up with Dr. Garabedian and had a conversation about what they had found during their procedure.

Basically...they did not notice a huge change from a baseline cath that had been done in June 2006 to present.  He said what he had learned from this cath is that Mailia still has severe Eisenmenger's Syndrome and high pressures in her lung vasculature but one thing they did notice, was that she was very responsive to medications given i.e. oxygen and nitric oxide, which in the past...she was not.

He said he was going to send this cath data to Dr. Black in San Francisco to think where we should go from here because based on these numbers...he was concerned about banding her pulmonary artery for reasons that would increase her right heart pressures and have risks of causing acute right heart failure.  Garabedian thought it best to pursue a more conservative plan like treating her with medications that she might respond to now and take the wait and see approach to see if her pressures come down...and if they do come down then consider further banding or other types of procedures.

So concerned with the data we had in hand...I sent these reports directly on to Dr. Black and Dr. Zannos Grekos at Regenocyte.  A week later, while driving home I received a wonderful call from Dr. Grekos telling me he had reviewed the caths...both 2006 and the most recent one, against Mailia's cath from June 2010 that she had in the Dominican Republic...that Dr. Garabedian did not have in hand at the time, to take into account...and that he could see at least a 20 POINT PRESSURE DROP!  That was from the time her stem cell transplant was done 5 months prior to present cath on Nov. 2.

So yes...that makes perfect sense.  Why all this time, during this summer and fall we have been witnessing Mailia getting stronger and showing more bouts of energy.  I had said in earlier posts that I though Mailia had at least a 30% overall improvement due to the stem cells...but confirming that a 20 point drop has materialized sent us reeling!

Dr. Grekos told us to go celebrate and hopefully we could sit down and plan another round of stem cells for he explained to me that when Mailia underwent her transplant in the Dominican Republic this summer, she was only afforded a "mini stem cell delivery" so to speak.  Dr. Grekos and his 3 other cardiologists would have liked to have seen the ablation or balloon they use through the catheter hold the stem cell solution in a little longer so as to have better vascular adherence...but were fearful Mailia's lungs would not handle it and they would risk losing her.

But to see how she improved...with the mini delivery even, sets up the opportunity to do another round of stem cells that will hopefully guarantee a better outcome yet.

So what does this all mean?...well, looks like we have to jump ahead to Phase 3 before Phase 2 can even be considered.  Another round of adult stem cells...and soon.

Then...just as we are happy celebrating the good news Mailia takes a turn for the worse.  A week after her cath...she had been complaining of the sore throat she had upon leaving the hospital, as her throat was severely irritated with road rash from being intubated. 

I started to give her everything in my hopes of keeping the crud that had hit her father the week prior and kept him home from work for 3 weeks with a bronchial infection, the worse I have ever seen Max debilitated by.  I contacted Mailia's doctor and asked if we should go ahead with antibiotics for Mailia...and he said no, to wait...see...especially since she showed no signs of fever.

The sore throat developed slowly into a cough...and her doctor prescribed her cough medicine, the strongest and safest she could take plus antibiotics.  That did not help, for a week ago Monday she went into a coughing spat and low and behold...she caused a horrendous lung bleed or what is called hymoptysis.

I acted fast...and prayed hard.  Her doctor said to watch her and to bring her in to the ER if it got really bad.  Max ran to town and brought home some fresh organic cabbage which I juiced for Mailia that very day.  Cabbage juice has been used to stop bloody ulcers...and has helped her previously.  I gave her an entire 32 oz bottle of ASEA which are reactive molecules based on redox signaling.  Both these together, had the bleeds under control Tuesday the next day.  I kept up this protocol and worked hard at keeping her from coughing.  Two weeks now...she is feeling better and on the road to mending from another frightful ordeal.

There is one thing I notice that consequently happens every time Mailia goes in for a procedure...she gets very anxious and when she stresses...her immune system goes into the tank.  Something we will work on...prior to the "next" one.

I pray for the day when Mailia will be triumphant over all that we and everyone else...has put her through.
Batter Up Mailia!~  Your day will come sweetie!