Home at last

We are all so grateful and happy to be home. Life at Seattle Childrens has quickly tranformed into life at the Kelly home and it is feeling far different that anything we have experienced before. I think the most surprising part of this new journey is that we are in a transition period that could last several months. We are getting to know 9 home care nurses, we are learning about Maya (who seems to be an ever changing kiddo in terms of development and care), we are learning how to incorporate the rest of our lives into a world where we cannot take Maya out of the home (except outside and to Dr. appoinments), and cannot leave Maya with any of the nurses until we trust and know them, all the while having Dean keep his normal routine at work, getting Addy to and from preschool 2 times a week (so thankgful for my carpooling buddies!!!), addimg in home therapy and schooling to our routine, going to church and small group, AND somehow teaching these nine nurses how to communicate with Miss Maya. This is a bit overwhelming and yet necissary. I am so grateful for the extra help in terms of Maya's care as it is VERY substantial, yet she often refuses to cooperate with people who cannot or do not communicate with her. She has absolutely no hearing so one must use pictures or ASL to let her know what is about to happen, and Miss Maya is asserting some control over the situations she finds herself in and often does not like these strangers doing things to her often in varying methods, as even giving medication can look different from one person to the next. I am learning more and more how truly comfortable she is with me, which is a blessing, and yet wishing everyone could learn ASL in a day so that she would be more comfortable. Any child would be distressed by strangers caring for their medical and personal needs, but these strangers often do not communicate with her. I am learning to be an interpreter/ Mommy which is no easy task with an almost 2 year old and a 3 and 1/2 year old trailing behind my every move. On the bright side of things my little girls are quickly learning that sign language is very important to their relationship with Maya. One very wonderful part about the past two months is that with Maya's trach she is sleeping better, breathing better, is far happier, and more interactive and energetic. While she still is fatigued by the end of the day and overstimulated by the change surrounding her, she plays hard, and is having lots of interaction with her sisters and healthy neighbors that come outside to play with us.

Addy and Teya have simply been super stars through all this. They love their new bedroom next door to mommy and daddy, they love the nurses, they love joining Maya up on her new big girl bed, they love playing doctor and taking the pretend elevator to the 4th or 6th floor (like they used to daily in Seattle at the SCCA House and the hospital), Addy transitioned very smoothly back into preschool, and all three girls are all in varying stages of potty training, they all have peed on the potty (Addy all the time) and yet Maya is the only one who has pooped on the potty... Addy promises this will happen when she turns 4! Addy frequently asks when the Grandparents are returning and whenever Teya asks "Where's Grandpa?" (which she does several times a day), Addy responds with "In Portland with Sunny!" Sunny is their dog, and I still am not sure if Teya is asking for Grandma or Grandpa as she is quite fond of both of them, but calls both of them Grandpa...strangly enough she definitely knows her other grandma because her name is "Babu". Addy aslo asks if it is a long time until Maya's heart surgery and if Maya will get sick again. She never seems very bothered by these topics, just very curious. I think most of all, Addy would like a lot of warning before another big adventure as she really needs to know what is happening today, and tomorrow, and in fact every day of the week. She will start with Monday and go through each day of the week making sure she knows what is happening that day.

I think Dean has earned his super Daddy award as well, and savors every moment we are together as a family in our hown home. When he gets home from work he just soaks in time with his girls and is learning all of Maya's new medical equipment like a champ. We both laugh at how overloaded we are with information right now and how we wonder if we always hear what people are telling us...so I apoligize if you sent us an email or called on the phone and we never returned it...we are just really overwhelmed and figuring out our new routine, not to mention we are pretty exhausted to. Despite the fatigue, I must say we are in fairly good spirits and just treasuring family time, our home, our neighborhood, our church, and the many amazing people God placed in our lives to help us through this past year. We also know that you are the same amazing people who will stand beside us as we transition, and as we establish a new "normal" for our family, and who continue to shower us with grace and support. I cannot tell you how grateful we are for the many people who have supported us with letters and emails, child care, housing, financial help, transportation, with gifts and outings, and visits at the bedside in the hospital...we will forever be grateful to each of you!

Hospital Pictures

Special car from the Bogner's Church small group...thanks so much all of you!


Addy helping Maya with her Easter Basket

The Kelly family on easter morning

Getting ready for home

Maya is doing really well. Although she is trached and unable to be capped with her current trach (and will need this trach until her esophogus can be dialated), she is signing a ton, very active, and is in terrific spirits. Grandma and Grandpa Royston along with Dean and I now have just 3 more trainings before we are cleared to take her home. We finally were approved for nursing care at home through our insurance, and we are waiting to aquire nurses for the home. Otherwise Maya is healthy enough to go home. We should be home in the next few weeks, and Dean will spend some time reorganizing the house so that Maya's room is nurse friendly again, and the little girls can sleep near us, with a play room above Maya's room. We have had a good stay here in Seattle since Maya's recovery from trach surgery. The doctors continue to be terrific with her, as do the nurses and Respiratory Therapists. Maya is getting daily activity from either Physical Therapy and an ASL interpreter or a volunteer and an interpreter. We are hoping to have a video conference with her class at school so they can sign to her and see her live, and ask her nurses questions. Maya has frequent walks throughout the hospital and gets lots of positive attention, especially from those who saw her when she was REALLY sick. Addy and Teya must think this is all one big exciting adventure. They love staying at the SCCA house and get a lot of attention since they are the only kiddos there right now. They love swimming with me at the hospital pool and playing with the volunteers in the playroom during trainings. While I think they will be happy to go home, Addy says she would rather not:-) They also have been blessed by so many friends with gifts, toys, and new activities to play with...and of course Addy, the fashion DIVA is most excited about her new "Rock Star" outfit she received from a wonderful small group of friends here in the Seattle area! Must say, considering how hard this has been, we have come through very well. We will greatly miss all the extra Grandparent and Babu time, as I know they will too. BUT, it sure will be terrific to get Maya home and finally ALL be together as a family again! AND, be back home in Tacoma!

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.