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.

A good Day

So today was better than yesterday and my mood has lifted a bit. Perhaps it was just the sunshine or having Dean here all day, or the news I got this morning that Maya is indeed releasing enough CO2 (from her blood work yesterday...something her Drs have been concerned about), but overall Maya was better today as well. We spent a lot of time outside, and for whatever reason Maya's secretions were so much better outdoors. Sure, there were moments of leaving her alone for 10-15 minutes in the living room eating her food, while I got something done, and returned to a girl soaked with saliva...but it was less that yesterday. We never even used the suction machine today...probably could have, but she got what she needed out of her mouth, and there were rarely secretions just gurgling in the back of her throat. Maya was in such a better mood today as well (perhaps it was because she got such a good night of sleep)...she walked all over the backyard checking out trees and ivy and an occasional swing on the glider and slide down our slide.We took the girls to the dog park with Maya in the stroller, and I think she laughed at every dog she saw...what a delight! As I type this the little girls are dancing about the living room and Maya is making the happiest little noises watching them :-) My Mommy heart is happy today with the knowledge that most certainly tomorrow will be different, and trying my best to be okay with that.

Lots of secretions and CPAP

Secretions and CPAP just about sum up Maya's state of being currently, and boy I did not expect this anatomical change in Maya to be so challenging for me. Maya is doing well and her energy is about normal, but the poor girl has to put up with me suctioning her mouth and suctioning her nose and forcing CPAP on her over and over and over again...it is a shock that she forgives me and still yearns for mommy snuggles and attention....the truth is she handles it all from me way better than nurses or doctors, and for the most part she is breathing comfortably and is relatively happy. I am just overwhelmed at all her care...it reminds me of early baby hood life with Maya...needing her at least in ear shot so I can hear if I need to attend to any choking on unmanageable secretions and not being able to take her anywhere public. I must remember that this is a season and it hopefully won't be this way forever. Maya has heart surgery scheduled for March 22nd and until then Maya is in isolation...happpy to have healthy visitors, but otherwise we are getting VERY comfortable at home all day long. My mom will be out to help every other week until surgery so that the little girls and I can escape from the home, drive to preschool, go to the Y, go to the park, or go grocery shopping...or who knows maybe give Dean and I a chance to talk. We wake up and he is off to work, he comes home and it is family time, then bed/ CPAP time and somewhere about midnight I hand off Maya to him and go to bed while he listens for her (I cannot get any sleep listening to Maya, so I am so grateful that Dean can). I am pretty weary and discouraged, and am grateful for my optimistic hubby (he is taking this all in stride and is very proud of Maya and thinks she is doing great without her fistula (hole))...we will just have to wait and see what the future holds, and it is impossible to make any predictions at this point. We are grateful that her stoma is closed and heart surgery is just around the corner. As for now, Maya does not have a hole or trach in her neck, she has VERY thick hard to manage secretions, but her saturations are great day and night, and CPAP is a huge struggle to keep on her...Maya has learned that she only gets to watch Signing Time if she wears her CPAP. We had a great moment 2 nights ago where we got CPAP on her after she was sound asleep...she wore it for about 1 hour...sigh. That has been our greatest success thus far. We certainly hope for improvement.
Thanks for all your prayers, keep 'em coming!
Marty

Still at children's

Maya continues to keep things challenging. Yesterday she had some gurgly breathing that bothered her main Dr, a fever, and some vomitting. We still are unsure as to what the cause of it all is. The Drs still think it could be pain from the procedure and honestly tylenol is helping , and the Drs...think that she may not be having a strong cough for a couple of possible reasons...it hurts (and Tylenol does seem to help)or she is not inhaling enough air for a productive cough. She has had a few good productive coughs today, but they would need to get stronger for her to have the hole closure long term. she is not up to walking a bunch and we cannot determine if that is because she does not feel well or if it is because she is not getting good oxygen/CO2 exchange...her SATs have been great and so have her other vitals...just hard to say at this point...no one is overlu optimistic at this point. Only time will tell. Her Dr.s are pushing for heart surgery as soon as possible, but the scheduling for surgery is out 4-5weeks still...and in order for her to make it with her hole closed until then, she needs to NOT get sick...so she will most liekly be isolated until a few weeks post heart surgery...of course healthy visitors would be welcomed to our home:-) Not sure if we will leave tonight or tomorrow morning or later at this point, my best guess is if she does not get worse, she will go home in the morning...as there is not a whole lot the hospital can do for her at this point, and we will have much better luck with CPAP at home.

Maya's surgery

So far Maya has tolerated her stoma closure and botox injections well. Grandma Fran came with me since Dean is not feeling great and should not be at Childrens with a temperature of cold like symptoms. He and Grandpa who also has a cold are managing the littles, and Grandma and I are actually a bit bored already...which is a good thing! We now just have to see how sleeping tonight goes...will she keep her saturations up and will her sleep apnea not be worsened with the closure??? We have to wait 48 hours before we try to put CPAP on her so she needs to make it 2 nights first. She has had some low heart rates, but nothing anyone is overly concerned about given her current heart condition. She IS getting a bit bored and tomorrow may be a long day for whoever is with her, she is already sitting up, kicking like carzy, and tired of the 3 signing time dvds I brought...will need to get more tomorrow...can't decide if we want to try some CPAP in the hospital before heading home or not...I for one am anxious to be back home, and really I think Maya will be as well. Tomorrow I will meet with the home health respiratory nurse to get a little more CPAP training and ideas to help Maya tolerate it, as that is our next big endeavor with Miss Maya...OH PLEASE OH PLEASE tolerate your CPAP MAYA!!!! May see the cardiologist tomorrow as well and potentially and talk about setting a date for surgery. Please pray for a successful night of breathing for Miss Maya!!!