2/8/10
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.
1/11/10
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.
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.
11/5/09
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!
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!
8/25/09
Maya at Mary Bridge
PICTURES OF MAYA SUCTIONING HERSELF AT MARY BRIDGE HOSPITAL
At Children's Hospital, Maya was diagnosed with a terrible case of pnuemonia...her left lung was all cloudy a "white out"...no clear air in it. She seemed to get more comfortable over a few days and spent from Sunday-Thursday at the hospital and was then discharged. Thursday and Friday morning she seemed happy to be home and chilled out much of the time on her bed in her room, while her sisters played nearby. Friday at 5 PM she started having a cough attack that lasted non stop until 9:45, when the nurse on call made me promise her I would call 911...I did. Maya was admitted to Mary Bridge hospital in Tacoma where her x-ray showed no improvement from her initial X-ray at Childrens...her pnuemonia was still just as bad. Another X-ray and CT scan later showed that her left lung had collapsed as a result of mucus plugging up her bronchi and not allowing air into her lung. A procedure on Sunday scoped her airway (she was intubated) and sucked up an exuberant amount of mucus from her bronchi. 4 IVs, many episodes of suctioning, 4-5 differnt types of antibiotics, routine nebulizer treatments, and routine CPT and 1/2 hours time periods wearing a vibrating vest, Maya continues to be at Mary Bridge where her status has gone unchanged, not worse, but not better either. In the past 24 hours Maya has begun to cough up large amounts of goobers (a good sign actually) and we all hope and pray that the X-ray tomorrow morning will show improvement...Drs. today noted air was heard moving in and out of her left lung...a good sign of improvement.
Vacation with neighborhood friends
Shortly after recovery, or perhaps during the tail end of my recovery we went to Leavenworth for our annual vacation with our neighborhood friends. Dean was able to golf with the other dads, I hiked with the other moms,the adults played games late into the night after the kidd were in bed, and the kids played endlessly with their friends. However, many challenges effected our trip. One family decided it was best to stay home and get healthy for a wedding they needed to attend in Boston, as their son was ill. Addy got sick on the trip and had a fever for the first few days, and then Maya, Teya and another friend's daughter all caught a bug. Unfortunately, Maya was VERY sick, needed oxygen (we had to travel to Wenatchee to get more), and then ended up admitting her into Children's hospital in Seattle on our way home. While it was great to be with friends, it was a bummer that we all could not participate in this year's vacation like we did last year.
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