June 13, 2012 Sacred Heart Institute Spokane, WA.
Mailia was scheduled back in June to undergo a right heart catherization study with Dr. Carl Garabedian in hopes of finding out where her lung pressures would be 7 months after her last Adult Stem Cell Transplant. This was done in order to ascertain weather or not, she would be at a point to safely undergo corrective heart surgery from Eisenmenger's syndrome.
We packed our belongings and plenty of oxygen to head to Spokane late Tuesday afternoon and settled into a hotel right behind the hospital so we could get Mailia admitted at 6:a.m. the following morning.
After a nice dinner at a little Italian bistro we found, we settled in for the night listening to the cracking of thunder and lightning...with the rain hitting the windows and trees.
While waiting for Dr. Garabedian to come in the following morning, nurses abound getting Mailia ready for her procedure while SteelDust, Max and I waited anxiously to talk with Dr. Carl...with regards to Mailia's procedure and also, took time to snap a bunch of pictures.
Dr. Carl came in and graciously greeted Mailia with much humor and wit...and set the wheels in motion. He said he would most likely sedate Mailia...in lieu of intubating her but wanted us to know he was going to try a different protocol and was going to add a combination of Nitric Oxide with 100% oxygen and that Mailia would be his first patient ever...to try this new method...to which would act as a "double vasodilator".
We went on to discuss the published video and works of Dr. Randas Batista for Eisenmenger's syndrome on the CTSnet web site and how we were asked by Dr. Joel Dunning of the UK...to leave a comment on Mailia's relationship with Dr. Batista and also the flood of comments that were generated by other heart surgeons, especially one well noted heart surgeon, the head of the International Childrens Heart Foundation, Dr. William Novick.
Dr. Novick recently has done an unpublished study about 36 patients that were treated with high pulmonary vascular resistance (pulmonary hypertension secondary to a heart defect) using the double flap patch for a VSD. It is our hopes that at some point, Mailia's team of doctors will obtain this new data from Dr. Novick to see if these patients pressures are anywhere in line...with Mailia's current pressures making her a potential candidate for this type of corrective heart surgery.
We then went on to ask Dr. Carl if he would please for both Max, Mailia and I gather all the data today, review it objectively and give his opinion and recommendation to Mailia's current heart surgeon, Dr. Michael Black in Florida...on a path forward in hopes he would find it in favor, of a mechanical fix. Dr. Carl told us..."that, it what we are looking for". He told us you know, until that hole can be completely fixed, the pulmonary hypertension will never resolve.
We asked him if we would be able to compare Mailia's pressures from her last cath in 2010 to today's and he assured us we would, that after her procedure we could crunch the numbers to see where she stood. After asking Mailia to sign the consent forms...since she is now 18 he saw how quickly her heart rate went up and joked with her about SteelDust not signing them and so... left that task, to us.
Dr. Garabedian said he needed to go change into his hospital pajamas just like Mailia, and we asked him to please take good care of her and how very grateful we were to him and how much we appreciate this and to now...get the party started!
I cannot emphasize enough how blessed we feel to have some of the best doctors in Mailia's corner and on her Miracle team.
The cath lab nurses came to fetch Mailia and we followed her to Dr. Carl's new state of the art cath lab that has just been constructed for him and his team. It was almost like comparing an astronaut getting prepped to go on the space shuttle. Thumbs up...Mailia knew what to do. We left the pandemonium and headed back to the room to get comfortable for a bit of a wait, while Max went to browse the gift shop for a Webkinz surprise for Mailia.
After they brought Mailia back in to her room we got her comfortable and drinking lite fluids for a couple of hours until she sounded off that she was hungry. I fetched her some lunch from the cafeteria, soup and grilled cheese sandwich and more water to re hydrate herself.
Dr. Carl came in later with paperwork in tow. He compared the numbers generated in this cath report to the cath he did in 2010 and the one from 2006. In looking at the numbers that Max and I later charted into an excel spreadsheet, we still have numbers (PVR) that are high...but that the were definitely a lot better this time around.
So these current numbers were a nice response to the potent combo vasodialators he used, the 80ppm Nitric Oxide and 100% Oxygen. He told us she had not improved her baseline conditions but that her "reactivity" has so there appeared to be a significant IMPROVEMENT in her PVR based on these numbers.
He told us he was happy with this outcome and that he would get the wheels in motion to discuss this data with Mailia's heart surgeon and see what Dr. Black thought of these numbers, his impression and what as a team, he thinks we should do next.
Love and blessings...The Goforth's