What a month it has been dear ones, since our last post…mostly, what a blessing to see Mailia getting stronger by the day and enjoying her new found energy. We cannot believe she is the same person from just 3 months ago. Prior to her adult stem cell procedure, she was lucky to walk from the living room to the bathroom without getting short of breath, but now…we have witnessed her having the stamina to pick up her heavy E tank of oxygen and walk out the door to our vehicle without passing out!~
We try to encourage her to still pace herself and to refrain from over doing it…for we know how she so wants to be free of the oxygen and constraints the pulmonary hypertension brings, but we also want the stem cells to keep building and helping her lung vasculature to the point where she will be able to tolerate surgical repair to her heart.
Regenocyte has charged us with follow ups for Mailia at 3 month intervals…so in light of her having her baseline ECHO done in San Francisco by her future heart surgeon, Dr. Michael Black…Dr. Black afforded us the opportunity to meet Cardiologist Dr. Robert Popper, who is also from California Pacific Medical Center, up at their satellite clinic at Sutter Creek Hospital in Crescent City, Ca. This saved us having to drive all the way to the S.F. bay area…and Max once again, fired up the Mailia’s Miracle mobile and loaded us up…for a much shorter trip and adventure than the last road trip we just made this summer in taking Mailia to Florida and the Dominican Republic.
We left at the crack of dawn this past Thursday and 10 hours and 543 miles later, we arrived into northern California’s Crescent City…after a beautiful and scenic drive through southern Oregon and some gorgeous stands of old growth Redwoods. We checked into our hotel, had dinner and set Mailia’s Wii up much to her relief…the TV was accommodating for this.
Friday morning we ventured out to find the hospital and got there an hour and a half early not knowing what to expect, other than getting Mailia in for an ECHO. Dr. Popper’s assistant Darlene had been trying to reach us for a couple of days to see if we could in fact, come in earlier because like us…Dr. Popper travels up to the Crescent City hospital every 3 months for 3 days…to see his long standing patients…and drives the 15 hour round trip…every time. Plus…Dr. Popper is no spring chicken…he is 80 years young and still going strong!
We were met by a gracious and spirited technician by the name of Randy who took charge of getting Mailia all set up for her ECHO. It was a pleasure to be able to discuss with him, about Mailia’s recent journey to the Dominican Republic and he was very interested to learn about her treatments and what is forthcoming for her. Unfortunately…he was not able to get very good views of Mailia’s heart in the room where we found ourselves initially…so he asked if we could remobilize Mailia in the hospitals imaging department where they were better equipped.
After 3 hours, we finally finished up with her ECHO and Dr. Popper came in to check all the various views and stats…he asked a few questions about Mailia’s initial diagnosis, how many caths she has had and previous treatments. When I mentioned about the stem cell therapy she recently underwent, similar to Cal’s…he said, I am going to say something but do not want you to take it personally. He asked if I had ever heard of a heart surgeon back in the ’60 who used to close VSD’s with high pulmonary resistance and how he lost every single one of them. I told him no…but that yes, we are aware that closing Mailia’s defect might be contraindicated at this point…that what we are truly looking and hoping for is a means to facilitate her lungs to further heal…not only with the stem cells, but with a mechanical means such as banding her pulmonary artery, or applying a double flap patch on her VSD…or even, a RVAD to help offload her lungs and relieve her heart…giving the stem cells more umpf to help regenerate her lung vasculature…so that later, as her pressures really come down…to safely and permanently close the VSD.
He said after I conveyed this…you are right on!
So…now we wait a few more days for Dr. Popper, in all his wisdom and experience to review Mailia’s ECHO results at 3 months against her baseline ECHO so he, along with Dr. Black can decide a path forward for Mailia. We trust both Dr. Black and Dr. Popper to find a workable solution and path forward and look forward to really doing some serious discussions here shortly.
This brings me to a related case in point. Wow…another incredible sign divinely sent…that we are on the right track.
Last week, I received an email from Brazilian Heart Surgeon Dr. Randas Batista with new photos of his hospitals construction, still in progress with interior fitout. He also told us that a young girl with Eisenmenger’s from Syria, who he had banded last year, was doing great now, confirmed by the attending heart surgeon, Dr. Ahmad Rajaii-Khorasani from Mashhad Iran with the following:
Hi Dear Randas:
The girl who had PA banding is now doing great & she is getting married soon. I have two other patients for this year .One VSD and the other one PDA.
I have asked the nurse who took care of your patient in the ICU to get her case ready to be presented and the patient will also be invited to come to the conference and answer any questions. Love you man. Looking forward to see you here. Thanks Ahmad
I am hoping to make contact this week, with Ahmad and ask if he would also send us and Dr. Black their published work and findings pertaining to this young woman. Now granted…she did not have stem cell therapy, but as I have believed and said all along, the lungs and body can heal…given the right elements. I pray they will continue to find ways to help improve their patients lives and outcomes…to that extent, I pray for all our world healers and physicians that they too, continue to find ways to help afford positive healing.
Mailia chanted her wishes repeatedly to see a wildlife safari in route to our next evening stop before our long leg home. We were going to spend the night in Bandon…by the sea and so tried to make our way north on hwy 101 along the coast. We got to the Wildlife center about 35 minutes before closing and Mailia was so thrilled to see adult leopards, lions, tigers and their beautiful babies. Mailia even had the opportunity to pet some little black leopard babies and also bottle feed a gorgeous baby Bengal tiger cub. We were so grateful to the staff there…for allowing Mailia this amazing experience…one she will never forget.
We ventured into Bandon and found our hotel near the beach…a gorgeous place with a beautiful setting and view. The next day…we got up early…loaded up after a quick breakfast and high tailed it home, in time to meet our wonderful and incredible friend and family member…Ramona, who without her help caring for our home and critters…we would be hurting in a big way. She hugged and kissed Mailia and ran out to her car to head home and then to the hospital…as her second daughter was going into labor with her first grandson. We are so blessed with Ramona…and grateful for all her love, support and help.
After a quick accounting of all our fur kids…we headed to Dust Devil Stadium for Mailia’s baseball fix for the evening. She is pictured here, one last time with two wonderful men and brother's who met Mailia last season, Dale Moe from Delaware and Duane Moe from Kennewick, Wa. and who are part of her miracle. Only one more week of baseball left now…as fall is quickly approaching and Mailia is feeling the anxiety of summer’s end once again. I think…we all have a greater appreciation of our daily lives and the events that are beautifully unfolding before us.
It is time to get busy again…staying focused and requesting much needed and appreciated help to continue fundraising for Mailia’s next big step and procedure and to continue however we can…to help others to do the same. We will keep everyone posted, as soon as we hear from Dr.'s Black and Popper on Mailia's next path forward.
We thank everyone for their continued support and prayers...we are so very grateful and humbled.
Love and blessings...
The Goforth's
No comments:
Post a Comment