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
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