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!!!

Surgery tomorrow

I do think Maya will in fact have surgery tomorrow (trach stoma closure adn botox to her salavary glands to prevent excessive secretions) at Seattle Children's, but I am always shocked how procedures and the "getting ready process" for our family never seems to go too smoothly. About 2 and 1/2 weeks ago Maya caught a rspiratory virus...she was fine for a few days and then all of the sudden she was at the ER with a 102.2 temp and we were concerned about pnuemonia. She was sent home and then we kept her out of school for about a week trying to get her better, and give her nebulizer antibiotic treatment to keep her from getting really sick and to kill all the bacteria prior to surgery. So she is well, but germs seem to be all around us this time of year. In order to prepare for surgery these days it is not all about Maya anymore, there are preparations made for the younger two sisters. While Teya is super easy going and finds transitioning to the grandparents and back to parents as caregivers and even a play date thrown in here or there, to be a piece of cake...it is not the same for Miss Addision. Addy's 3 year old emotions are quite sensitive and it is hard for ANY change to occur in her life that may change the routine and structure of her day. She has started a night time routine of her own that we are not excited about...it is called wake Mommy and Daddy up 4-5 times a night and see if they will come lay down with me. And with two nights to go before the granparents take care of her we could not wait any longer to nip this habit in the bud. We decided to try the work of the ever popular "Super Nanny"...no more long time cuddles at the side of her bed or comments about how much we love her and oh if I could actually sleep on the floor of your room I would, but I can't...and really I am not sleeping at all when you wake me up 4 times a night, etc... So at 1:30AM when Addy awoke me for the 2nd time, I said very calmly put her in her bed and stated "good night Addy, it is time to go to be", then I retreated to the couch where I waited for her return. Sure enough merely seconds later she came pitter pattering across the kitchen for me, and there was no more talk, just taking her by the hand and escorting her to her bed OVER AND OVER AND OVER, then Dean took charge until Teya woke up (Let's just say for over an hour Addy was screaming and wailing,,,it was amazing Teya slept through that much of it), and then I took over while Dean settled Teya down in the pack n play in our room. Then it was my turn again...I love how Addy slowly turned silent and just pattered down the stairs where I intercepted her and then without one look in her eye or one word, I took her hand and led her back upstairs to bed. Inside I just kept thinking how proud Super Nanny would be of me and all sorts of weird thoughts that go through your head at 3:00 in the morning. I made it to 3:30, and switched with Dean who at this time was feeling crumby and was worried he was getting sick...ughhh, and he did one more escort with Addy to her bed and at 3:50 the house fell silent and we all got 2 hours of sleep...then of course Dean was up for work and starting Maya's food and of course Addy was up at the crack of dawn too. AHHHH! the joys of parenting. Well, we have one more night of training Addy to bed before poor Grandma and Grandpa take over (My mom has reassured me that training will continue in our absence). And the funniest part of it all is that I am so excited to "get away" with Dean and get a whole night sleep while Maya is carefully cared for in the Seattle Children's ICU tomorrow night....perhaps that is wishful sleeping, as I am most concerned about her night time sleep without her stoma (trach hole) open...but over 12 hours hanging out with Dean, may be a nice change of pace....I guess we have to look on the bright side of everything right? And if this procedure goes well, Maya may tolerate CPAP and avoid having her trach replaced. Maya checks in tomorrow at 12:00 and is scheduled for a 2:00 procedure. We appreciate all your prayers for Maya to tolerate sleep in particular with her hole closed, and that maybe we could be home as soon as Thursday or Friday.

Maya's latest

Well, it certainly has been awhile since I last updated our blog. Last month was certainly a challenging month for us in terms of deciding what we should do to best help Maya from a medical standpoint. Maya is still having issues with her lungs since her pnuemonia in August. One lung has some permanant damage as a result of aspiration (swallowing her secretions the wrong way and into her lungs over a long period of time). Maya ALSO is a risk for medical complications due to the fact that she has severe sleep apnea that we have been unable to treat. She has not tolerated CPAP, however when she wears the machine then air that is supposed to go into her lungs is escaping out the hole in her neck left by her trach. We spent all month determining that most likely Maya would need to be re-trached in order to give her access to CPAP through the trach tube. Then the Doctors discussed that if she were to be trached NOW, they would want to proceed with her open heart surgery (this has been an anticipated surgery) now as they do not want to do it with a trach in...too many risks for infection....secretions from the trach tube getting to the incision site.

So we spent a lot of time debating all of this and were even denied coverage for nursing care if Maya were trached which threw a whole new set of issues at our family...a trach without nursing care would be very challenging to manage. We had almost decided our plan when we met with Maya's ENT last week. He encouraged us and it makes sense to us. To close Maya's fistula (hole in her neck) so that the cardiologists can proceed with surgery (we would do this whether or not Maya is or is not re-trached), but instead of quickly doing heart surgery and immediately traching her...we will wait for her hole to heal and wait a bit before heart surgery (this first procedure is scheduled for Feb. 9th), we will inject Maya with 4 doses of botox to her salivary glands to minimize any secretions. We would then spend every night working hard to get Maya to tolerate CPAP (where the air would actually get to her lungs providing her possibly the best sleep she has ever had...that hopefully will help her to tolerate it). Then in 2 weeks-3month post surgery (before the botox wears off) do Maya's heart surgery...and see how she is doing. If we have to...we will trach her. But, there is an outside chance that a good heart and tolerating CPAP with a closed hole will make her healthy enough to avoid re-traching her, and best of all could help decrease aspirations...our understanding is that a trach could actually worsen Maya's swallow causing her to aspirate MORE.

There is no right or wrong answer we truly believe at this point, but we can give Maya a chance at life without a trach. And we can always pray hard that through her Doctors God can work a miracle of healing in Maya that no one would expect...it has happened before that is for certain! And if we have to, we can trach her again. Meanwhile, Maya is doing TERRIFIC! Hardly a kid who looks like she has compromised lungs, a weak heart, and severe sleep apnea! She lost her first tooth (though we never found it!), is still showing more signs of expressive communication and wants to be with me, Dean and other kids and people all the time. She rarely goes off to the corner to lay down, but rather wants to be a part of the social world and interact with others. She is so amazing, and the more she interacts the more Addy and Teya begin to notice Maya and want to engage with her too.

This season of medical intensity in our family certainly has not and is not concluding any time soon. Addy is learning lessons no 3 year old sister needs to about hospitals and operations, and not having Mommy and Daddy home when Maya is in the hospital (or when we are in the hospital). But like Maya she is a strong little girl who is still all about pink, ballet, singing songs, and dancing about the house screaming with laughter. I think God knew we needed that in our house during this season. And of course He has used Teya to be comic relief. During the most difficult of times she continues to babble and make various attempts at making mom and dad laught at her...her smile, her waddle, her attempts at running, climbing and trying her best to be a 3 year old like Addy is truly our definition of "cuteness."

We will most likely schedule open heart surgery in the next week or so. I am thinking anywhere between March and May. Please pray for health for Maya, as health is essential for surgery and success! And of course another illness like the one in August would be devastating! And of course our entire family could use your prayers.

November Update

Maya:
Well, it has been a more challenging transition to school this year than in prior years, beginning with Maya's long recovery from pnuemonia in August. Now she is healthy and strong and doing her best to fight minor colds and runny noses...she and her sister have received their first round of H1N1 shots and their flu vaccines. Maya is in a K-1 classroom most of the day with her 1 on 1, and she spends some time learning with the rest of the kids, and then spends a lot of time doing one on one activities. At 2PM she goes with her one on one, over to the preschool room for more socialization time, while they do "free play" time. She stays with that class of kids until the end of the day at 3:30.

Maya is finally making some good communication progress. She is not signing a ton, but when she does sign she is using it appropriately and more consistantly. She certainly is understanding more sign language and can follow some simple directions. She amazed Dean and I a few weeks ago on her trike...her endurance was great and she steered herself all over the place, even turning around at tight corners. Her balance also continues to improve. She is getting up the bus steps (which are HUGE) independently...using the rail for help. She also is very excited to be social with other people, and even kids now...this is a huge change for her. She JUST does not know exactly how to interact with kids yet, but she is trying:-)

We met with our WA state CHARGE families recently and had a blast hanging out with all the families. That connection for us continues to be a safe place to share about our journey as parents and the unique world of Maya, for that I am so thankful. It also is a wonderful place to share our struggles and celebrate the acheivements of our wonderful children...who are ALL so special. We have met now for about 3 years and we are so comfortable with each other...Dean commented on how quickly we dive into "real conversations", we really don't spend much time in small talk...but you know what, it is not all serious, as we try not to take our lives too seriously or we would go nuts I think...we certainly spent a good amount of time laughing together!

Addy:

Well, Addy is definitely becoming her own special person. The words I use to describe her are vibrant, full of emotion, BIG hugger, athletic, and FUN! While at times she can be shy in public, she has quite a crazy side. Her outfits that she insists on picking out herself are very busy, full of color, and on the feminine side. She is doing 2 mornings a week of preschool, and ever since she began she has been reciting the alphabet perhaps 100 times a day, trying her best to write letters and numbers, counting everything that looks like something that needs to be counted, and signing her letters with me...it is cute, often she will sign the letter "a" and have her "a" kiss my sign of "a"...it is sweet. Her preschool incorporates the signs for the letters, which REALLY has helped her acceptance of signing at home:-)
Addy's biggest achievement of the month has been learning to swim all by herself. She now can jump off the wall and swim on her own to the surface and several strokes to Mommy or Daddy...so exciting for her!

Teya:
Teya is Maya's BEST learning partner here at home, as they both are learning to point, and both LOVE the same types of books,toys, and simple sign language. It is great to have a little buddy help me with Maya's story time and puzzles:-) Teya is all about imitation right now, and loves to try to say new words each day. She also is picking up sign language well too. She LOVES baby dolls and carrying around a backpack like her sisters wear when they go to school. She continues to be a real sweet spirit, but has begun to show a tough side of herself, that lets Addy in particular know that she will not be messed with! And, she can screech with the best of them too. Most of all, Dean and I spend lots of time just soaking in her cute little personality and hilarious behaviors...17 month olds are just so darn CUTE!