I talked to our ENT on Monday and I was instructed to have our pediatric pulmonologist admit us to the hospital for the capped, over night trial. Too bad he did not tell me that in first place as I waited a whole week to get this info, but I think it will all time out for the best. I was pleasantly surprised to get a call right back from our pulmonary nurse. She told me that this would be no problem and to call her back on Thursday or Friday letting her know what day we choose. What? Which day WE choose?! Boy, that was refreshing! So I want to make sure that Gracie has time to recover from her impending eye procedure, but I feel so encouraged that this could all happen relatively quickly. And then we have to get Gracie to sleep in a hospital bed without freaking out ;) And then we will have our answer about the trach! One day at a time....
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Ramsey and I talked to our ENT last Monday and he gave us two choices:
Repeat the sleep study...no thank you!....or have an overnight in the hospital where she is capped and hooked up to a pulse-oximeter. The later is our choice as Gracie will not have to be tethered to so many things. Originally we wanted to avoid a hospital stay as it just seemed more traumatic and germ-ridden, but now it doesn't seem so bad- ha! So when I called our ENT back to tell him our decision, I was informed that he was out on vacation (the nerve! ;)) all week and that we will have to wait until Monday the 15th to finalize our decision and then get things authorized and scheduled. And who knows how long that will take? Honestly, the summer is ticking away and we are getting nervous. We can't miss our window before cold/flu/rsv starts up.....oy. So please send some happy insurance/scheduling vibes our way! In the meantime, we have been trying out some new looks ;) ![]() Just before falling sleep- not too sure about this... :( Well, many of you have already heard my ranting on Facebook but I thought I would give the whole story here. Poor Gracie had a rough time of it on Saturday night. I thought we did a pretty good job explaining to her what would happen. We described it as a sleepover with Daddy (I was home with Ben as I am nursing and he won't take a bottle these days) where she would sleep in a "big bed" and wear "stickers". I mean, how else do you describe it to a two year old? We packed her favorite friends, blankets, stickers to put over the probes, bottles and even a favorite snack. Everything started out okay. Ramsey was texting me updates and Gracie was very interested in the facility, the room, etc. They put a few probes on but wait until the patient falls asleep before adding everything. So Gracie was wired up and settled in for a bottle and some stories with Daddy. She got a little upset at this point and they gave me a call so she could talk to Mommy. Then Ramsey got her calmed down and finally she fell asleep. Then the tech came in and added some probes and a nasal cannula. This was the kicker. Gracie kept pulling it out in her sleep and they kept coming in to readjust it. The last time the tech came in, Gracie opened her eyes to find a stranger putting something under her nose. As a medically traumatized child who once had an NG tube put down her nose on a regular basis, she FREAKED OUT. And who could blame her? Poor little girl..... Ramsey tried to calm and reassure her, but she was hysterical. Woken from a sound sleep in an unfamiliar place :( Ugh, it just kills me.... She was trembling so much that the tech checked her brain waves on the monitor to make sure that she wasn't having a seizure. Which she wasn't. But she was so upset that she just threw up everywhere. I mean ALL OVER everything. So Ramsey is yelling for help and flipping Gracie on her side so she doesn't aspirate puke through her trach.......ugh. He gets her as cleaned up as possible, but once a kid is that upset, it's over. And a kid with a trach needs a trach change, trach care, bath..... it's no quick fix. So home they came at 11:30pm where I had a bath waiting. Gracie seemed better but she kept talking about how she "choked in the big bed". I called our ENT today to see what we do next. He cannot decannulate her without a conclusive study of some sort, which is totally understandable. But I REALLY hope there is an alternate option of some sort. I just don't see how we could expect to take Gracie back to this place (there aren't many that handle pediatric patients apparently) and have her go through this again. So I was told that he wants to see the report before recommending the next step. This takes a week to get as the sleep center has to have a pediatric pulmonologist read the report and give it to our ENT. This is frustrating to me but I get it. I get that he wasn't there and wants to see the official report. But she was only asleep for 30 minutes! I have no idea how much he can glean from this and it just pushes out the possibility of getting her trach out. And the clock is ticking as this needs to be done before RSV season in the fall. So Ramsey was a rock star, as usual. Gracie was SO good, as usual. And I got really upset, as usual. Mama bear has her CLAWS out! I mean, how much can one little girl endure? She is just so awesome- so good and compliant and deals with so much that it is really hard for me to see her struggle with an experience like this. Case in point: how many 2 year olds do you know that wear their eye patch and glasses while giving themselves a breathing treatment with a nebulizer? I mean, really! ![]() Our amazing Gracie with her new special Tinkerbell :) Here are some links to some videos of our big talker! Way to go Gracie!!
http://youtu.be/_QBUHG667IQ http://youtu.be/No0gW2fIlag http://youtu.be/KjVr1E2kdlQ Yesterday was the big day! And we braved yet another bronchoscopy/laryngoscopy....meaning that Gracie was brave and amazing and Ramsey and I made it through as well ;) But to give you the whole saga, I have to back up to the night before.
We were just so excited for our visit to Phoenix Children's Hospital that we thought we would take an evening trip to the ER as well ;) And I wish I was kidding! Ramsey had just gotten home from work as I was getting Gracie out of the tub. I wrapped the towel around her and she took the three steps into her room with me guiding her from behind. Then she got tangled in her towel and awkwardly laid down for trach care. When I unwrapped her from the towel she was holding her left arm and crying. The poor kid! As nothing had really "happened" we weren't sure at first what was going on, but it became clear that she was in real pain and could not straighten her arm. I called our on-call pediatrician and she advised us (correctly) that it was a dislocated elbow and to take her to the ER. I am happy to report that, once again, PCH was amazing! They got Gracie right in, gently put her elbow back in place, gave her some tylenol and sent us on our merry way! Gracie was right as rain and ready to play! Ramsey and I were shaken up though- phew! We all got to bed at about 10pm and set our alarm for our 6:30am check-in time for the next day...... did I mention that through all of this poor Ramsey seems to have some kind of stomach bug? Seriously. Okay, so we make it out the door the next morning arriving only 10 minutes late (which to me is on time these days). I had been preparing Gracie for her big day by explaining what was going to happen (in kid terms, of course) and she was a ROCK STAR! Very excited to wear the special bracelet from the friendly nurse, very excited about the coloring book and beanie baby she received, and just cool as a cucumber. We didn't know that babies are not allowed back to the triage area, so Ramsey went back with Gracie and I waited with Ben. That was very tough for me, but Gracie wasn't scared at all! She and I sent each other text messages while she waited to see the "friendly doctor". The next thing I know, the scope is over (okay, that's a lie- I was fighting back tears and it seemed like an eternity) and the ENT came right out with pictures and news. So here it is: *The airway has improved and everything is "normal" *From a strictly airway standpoint, she is possibly ready to get the trach out *The space (or lack there of) between the back of her tongue and epiglottis is still very tight. *If she will need surgery (eye) or needed to be intubated in the case of an emergency, it would be very difficult to do and special tools would be required. *We are scheduling a sleep study to see if sleep apnea exists- this is the real test. If she has airway blockage while sleeping, then we wait. If not, then we have a decision to make....... I wish it was more clear cut and although we truly got all good news, I can't help but feel a little disappointed that there was not a decisive answer. So that's really all I can tell you for now. The sleep study will be huge and it is a great sign that the doctor wants to take that next step. It's going to be a big summer of emotional ups and downs, medical procedures and some stress, but it's all worth it. And although I feel a bit tired and overwhelmed today, I want to stress how well Gracie is doing and that she is totally headed in the right direction. She is super-duper-amazing and as soon as I find the battery charger for our camera, I plan to take some videos of our big talker!!!!!!!!!! Words, words words!!!!!!!!!!!! Yay! Thanks for all of the support everyone :) May 30th.....the big airway scope....I dread it and look forward to it all at once. We feel like Gracie could really be ready to get her trach out this time. But in the mean time, it sure isn't holding her back!!! Yay! Below are just a few examples of some of the fun we have been having :) She also really likes singing lately, which is just so cool! She was matching pitch and musical intervals last night!! I mean....WOW! Love this girl! ![]() Silly Monkey- hat and gloves in May? ![]() Our little Precious Moment ![]() Stinker Pants ![]() Time. Out. ![]() Blowing bubbles ![]() Chandler Mall Train! Gracie has become our little Eliza Doolittle what with weekly speech therapy sessions and new words bubbling to the surface each day. Incidentally, "bubble" is one of them! We took a walk up to the drug store and bought some special bubbles (in ice cream cone shaped containers, scented like...well, ice cream!) and Gracie blew bubbles for the first time! This is good for her speech as this teaches her to feel the air moving forward and out of her mouth (cap over trach, of course). Seemingly little moments like blowing bubbles, a sneeze, giggles etc are a whole new adventure and experience for Gracie! So here's the big moment:
http://youtu.be/NQSsBEd3wiM We also like to color and she is SO smart that she can name some: http://youtu.be/3BdWLok9Ixw And not to be outdone, Ben is smiling, cooing and gurgling, much to our delight! We never had a baby who could make noise so this is a really cool experience. And Gracie loves to imitate his sounds :) http://youtu.be/QbaQyS5PxMQ Ramsey and I have observed that Gracie is transitioning away from her signs to some extent. She still uses them, but often times it is in conjunction with saying a word. But then she says words that she never learned a sign for. It's just a cool and interesting process and we feel that her signing has been an invaluable asset to her receptive as well as expressive language skills. In other news, Gracie's next airway scope has been officially scheduled for May 30th. FINGERS CROSSED! And last but not least, this video is just for fun because it makes Gracie and I laugh when we watch it :) http://youtu.be/SHVxoK_7QKY Hi all!
I just wanted to quickly share that Gracie has been wearing the cap over her trach all day, every day! Even when eating and drinking. This is an awesome sign! We will be scheduling her next airway scope for late May/early June. Fingers crossed that things look healed, open and healthy! If so, then I will update you on the next step....but one thing at a time :) Also, we have been working hard with our SLP (Speech Therapist) and Gracie continues to acquire new words. I won't lie- it can be challenging. Especially when I see her getting frustrated. It's tempting to just ask her a yes or no question so she doesn't have to struggle, but that won't serve her in the long run! Especially because she is super smart and totally capable. So I am putting on my patient pants and we are all helping her through it! New words this week: Mama (instead of abba) Duck Truck Help Cap Go Two and three word sentences: More up! (when playing with Daddy) Go Mama! (pull the wagon!) More Truck! (She REALLY likes to watch the garbage truck come by) More please! Help Mama/Dada or even better, Help PLEASE Mama! Music to my ears! Hey everyone! Gracie has only had a few sessions with her new speech therapist and we are thrilled to share her wonderful progress! She is now using simple, two-word sentences and also likes to combine words with signs to form longer sentences and thoughts. It won't be long until this chatterbox takes off with her new found skills! Enjoy! PS- please note Ben and Grandma's cameo appearance :)
http://youtu.be/oJ0SqEJ6ntM http://youtu.be/fjgEjDPX3uk |
AuthorLauren, a Yoga Teacher, Choreographer, Director.....and new Mom!! I hope to add "tube slayer" to my list of credits. Archives
March 2014
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