Maya is doing well

Maya is now on the pulmonary medical floor and is doing well. She is taking trials off her ventilator with great success. Today she went on her first outting in the wagon and enjoyed some beautiful Seattle sunshine. After 30 minutes she was ready to return to her bed to rest and to watch her Signing Time dvds. The rest of us have moved into the SCCA house in downtown Seattle, and one person is rotating nights at the hospital with Maya. While we do not really get rests we are swapping time between Maya and time with Addy and Teya...not sure which one is more restful, probably being with Maya now that she is healthy. Grandma and Grandpa Royston are staying in Seattle with us, and Dean is commuting to work from Seattle and finding time to be with his girls...it is hardest for mom and dad to get time together, but this is a short season, and in a month or so we should be back to our routine, which hopefully will include some regular date nights. We added a sweet little neice to our family this last month and are thrilled to welcome Hannah Burke to our family...she is such a doll...love her!!!

Maya's trach is back in

Maya had her trach replaced this evening in a very uneventful and fast procedure. We are VERY grateful for the successful surgery and now the trach reality will settle in. At least it all seems familiar...new type of trach...it is cuffed this time, AND she may need some pressure support from CPAP or BiPAP for a bit to help her lung....which is at about 75%. We are happy to be on this side of things and look forward to the process of getting her healthy and home.

Maya is getting her trach back in

Well, it is a sobering night for our family...including the extended members of our family , as we plan for Maya to get her trach replaced tomorrow. We discussed with a team of Doctors on Thursday and made the decision over the weekend that Maya's chances of recovering from her collapsed lung and attaining full health again are greatly increased with the access a trach gives her to deep suctioning and positive pressure (through C-PAP). Maya's heart surgery and esophagus surgeries will be postponed until her lungs improve and her airway is safe again. Maya will be in the ICU recovering from the trach surgery at least 5 days and mostly sedated to help the trach site heal. We have now been in the hospital for 30 days which qualifies Maya for a medical coupon giving her access to nursing care. While we are at the hospital helping Maya get better and brushing up on trach care we should be on the floor starting next week and may move the family closer to the hospital since my mother in law heads home on Sunday...Medicaid should pay for that support, and we would only have to taxi the girls back and forth a few miles rather than 30 minutes each way. We have been so blessed by the Anderson Family who has been housing us in Edmonds, supporting us, praying for us, and just being super hosts to our family and dog:-) The greatest issue that most likely will keep us at the hospital up to another month is acquiring nursing staff to care for Maya at home. While the funding will be approved, the nurses need to be hired and staffed before Maya can come home.

For now I am focusing all my energy into tomorrow with prayers and optimism that Maya will have a successful procedure and that her lungs will stay inflated and not pose a threat to her health during the surgery. Also pray that her body will tolerate the anesthesia, and not react negatively to it. She is already intubated with a breathing tube in place which cuts down greatly on the anesthesia she would need for the procedure.

Dean and I are well and our little girls are doing remarkably well with all the change and craziness of the last month. The girls LOVE the Children's playroom at the hospital and swimming in the evening a few times each week. Most of all, I am grateful that they have each other...MOST of the time they just LOVE playing together. Dean and I could certainly use more time together, and would love something else to talk about other than medical decisions and plans for the next day and week...but we are doing well too. The super Grandparents are all so amazing and have sacrificed a great deal to support us and Miss Maya. We are also so proud to announce the birth of our beautiful niece Hannah Burke who weighed in at a hearty 9 lbs 4 ounces and mom and baby are well. We thank you all as well for your prayers and support...the strength we have received from our friends and family is truly God's greatest gift to us during this challenging season!

Please feel free to send this on to others...Hoping to send you great news soon!

Marty and the Kelly and Royston Family

Procedure tomorrow

Well, here we find ourselves once more at Children's hospital in Seattle. Maya caught a horrible virus and as she recovered the Drs ran a test to see perhaps if something is causing her to not swallow her secretions, since there are so many. After a procedure Maya, Grandma, and I hope we never go through again, it was determined that the upper esophageal sphincter near the epiglottis is so tight that she is not swallowing much if at all. Tomorrow, her ENT will sedate and scope her esophagus to determine why, and hopefully dialate her esophagus sphincter to allow her to swallow again. Afterwards we hope to spend a day or two here recovering and then get home to prepare for open heart surgery. We now have been to Children's 3 times in the past 3 weeks spending minimal time at home...which has taken a toll on us all. We are anxious for Maya to be healthy again and stable and in a place where she can be home and happy for awhile.