Thursday, June 17, 2010

Mailia Hits a Roadblock…We Detour to Memphis, Tn.

Upon our return to the U.S. from the Dominican Republic, we were so very anxious to see how Mailia would fair the plane trip three days post stem cells. She seemed to do alright, despite desaturating some and being a little tired.

After checking Mailia upon arrival to our hotel in Miami…we spoke with Dr. Grekos and his team back in Bonita Springs and they told us if Mailia was doing okay…they would give us their blessings to go ahead and head home. We spent the morning on Sunday June 6th catching up on laundry and repacking the Excursion for our long adventure back home.

Mailia’s cath site around her right groin was still very sensitive and painful so she kept walking to a bare minimum and used her wheelchair extensively. As we headed north passing through Orlando, not even the signs of Disney World and Sea World peaked her interest…as she was still wrought with soreness from the procedure and just home sick and glad to be back and heading in a westerly direction.

Max and I too were so relieved that Mailia had come through the procedure in the Dominican Republic and weathered the trip there and back, for that part was not an easy feat for Mailia. One, being on oxygen and a high flow at that, required us to navigate the system to make sure that American Airlines, who flew us there and back…and I might add, did a superb job at handling Mailia’s needs for oxygen support and shuttling to and from the check-in points to the gates. We took her wheelchair with us to the D.R. and Regenocytes DR representative Yanely, saw to the supplemental oxygen she would need while there in the form of portable E-tanks and oxygen concentrator.

If we had it to do over, I strongly believe transporting by air ambulance is the way to go for anyone with high pulmonary pressures. It is sad our medical insurance would not cover this for Mailia and we did not have an extra 20k to fund this but believe now, she would have done so much better all around.

But as we headed north…our final destination being Pasco, Wa. we would get as far north as Valdosta, GA for the night. The next day we ventured through some beautiful country through Alabama working our way towards Tupelo MS for our second night stay. It was during this late afternoon that we noticed Mailia was just not herself…and her oxygen saturations seemed lower than norma.

The next morning she was very lethargic and not looking well at all…so I got in touch with Dr. Grekos office and told them my concerns. Mailia’s nurse Micheline asked what the closet city was to us…and I told her Memphis, TN. She contacted the ER doctor on site at the LeBonheur Children’s Hospital and told us to head straight there…and she would fax all of Mailia’s medical records to them and let them know her status so they could check her out.

We arrived at the hospital and the ER staff took charge of assessing Mailia. We met with a Dr. Ciega who took all of Mailia’s medical history and also with their staff cardiologist Dr. Rush Waller. While on the phone with Dr. Grekos back in Florida, I handed the phone over to Dr. Waller to converse with him relating to Mailia’s stem cell procedure. With Mailia’s saturation levels being so low and her hemocrat levels a little low also, Dr. Waller wanted to rule out any embolisms that might have occurred in her lungs or cath site. He ordered a Cat Scan, ultrasound and ECHO which all came up normal thank God!

Dr. Grekos had told us that it was his feeling that Mailia’s saturations were dropping due to the fact that he has seen several of his patients who underwent the stem cell procedure go through a period experiencing cold like symptoms with coughing and that the stem cells are making new vessels but are not connected yet. So he told us there was going to be some shunting of blood through her heart which would reduce oxygen.

Dr. Grekos was right on…but we had no way of knowing for sure and it was better to be safe than sorry. We are so very grateful to LeBonheur Children’s Hospital and the staff there who cared for Mailia during her stay. It is a teaching hospital just down the road from St. Jude’s Children’s Hospital also…and we were very impressed with their old facility…soon to be replaced by their brand new Children’s Hospital which they will be moving into in September.

We are also so grateful to Dr. Grekos and his staff for their responsiveness and availiability 24/7 where it concerned Mailia's well being and making themselves available to help us navigate through this.

Mailia was discharged the next day in the early afternoon and we headed west…just a few short hours into Little Rock Arkansas for the night. Max and I had been craving some southern barbeque so we opted for that. Mailia had a chicken caesar salad and Max and I paid dearly the next 24 hours for our indulging in pork and beef barbeque at a local favorite. It did not agree with us at all and were glad that Mailia is not much of a meat eater…preferring salads. Smart girl!~

We left the following morning heading north through the beautiful Ozark country of northern Arkansas and southwestern Missouri to finally land in Springfield for Mailia has been dreaming of the day she could meet up with her brother Cory Riordan, since she reminds us constantly how it has been 3 years since she has seen him.

We spent a day in Springfield and got to see Cory pitch against the Springfield Cardinals at Hammon’s Field, a baseball minor league AA affiliate of the St. Louis Cardinals. Many of you know what a huge baseball fan Mailia is…and seeing her brother Cory meant the world to her and to us…for we knew this opportunity would be “big medicine” for her.

Cory is a wonderful pitcher for the Tulsa Drillers, affiliate to the Colorado Rockies and it is our hope and that of Mailia’s…that her brother will make it to pitch for the Rockies soon. Cory and Mailia spent some wonderful quality time together…catching up and bickering and teasing each other most of the time. Her laughter was/is healing and so contagious.

Thanks to Cory, we were graciously treated to a wonderful game and several stadium employees and local fans came around to meet Mailia and Steel Dust and showered her with attention and gifts that we are so very grateful for. After her release from the hospital, Mailia was so congested from allergies and with a sinus infection going, I called her pediatrician Dr. Nazar back in the Tri-Cities and he ordered her some antibiotics to help knock it out. I hit her with everything else I had in my eastern medical arsenal and she started to feel better…much to our relief.

After hitting a local Lincare for more oxygen and saying a tearful goodbye to Cory…we returned once again into the Mailia’s Miracle mobile and headed north to Sioux Falls, S.D. after deciding not to go directly west, for California and then north the same way we came. It was our intention to head back to San Francisco on the way home to see Mailia’s heart surgeon, Dr. Michael Black, but after conversing with him…he too thought it best that we head straight home with Mailia because he suspected there would be no significant positive changes in Mailia’s pressures for a few more weeks and that an ECHO in 3 months would be much more informative.

The Midwest was so green from rain…which we hit once we arrived in South Dakota and it followed us all throughout the state until we reached Deadwood, SD for the night. We stayed at a brand new non smoking hotel and set Mailia up with her wii and games after a nice dinner. The weather was cold and wet for June…in the low 50’s and quite a shock after coming from the hot temperatures in the south. Mailia had hoped to see Mt. Rushmore but no luck, the clouds were socked in so we continued our journey and long drive making it into Missoula, MT for the night. Along with the inclement weather came the disconcerting fact that we had no cellular service or data service between AT&T and Sprint for almost 4 days so we could not call or send updates midway and along our trip home.

The next day, Tuesday June 15th…an incredible 32 days after leaving Pasco for Florida and the Dominican Republic…we finally arrived home, safe and in tack thanks to God….and everyone and everything that helped afford our initial journey in making Mailia’s Miracle a reality.

We met so many wonderful people along the way, reconnected with family and friends and made new ones. Mailia I believe…left an impression with them all and in doing so, opened so many hearts including our own…to make a difference in the world, one day and one person at a time.

Traveling across country gave us the opportunity to see first hand, the status of our great nation and the people struggling to stay afloat and start anew. It gave us such a sense of appreciation and gratitude for not only what we have, but what we are a part of. Venturing beyond our U.S. borders, to the Dominican Republic and the beautiful people there also gave us so much to be thankful for. Everyone's Mailia's Miracle is HUGE...and will never be forgoten. This was truly humbling. We will forever carry gratitude in our hearts for everyones participation in returning the gift of life to our daughter Mailia.  Especially to you Dr. Zannos Grekos and your incredible team...thank you!

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