11-11-10

SMILE!





Well we are settling in and starting to feel good! Quinn, as you can, is feeling good! She is sleeping so much better then she was at the hospital. She started back to therapy today, and did great! We are meeting with nurses and staff from Riley tomorrow, another visit with Home Health, and then as long as all goes well, I start back to school Monday, and Quinn will start back as soon as everything is in place for her. We are still working on controling mucas and drool, but past that, her color is better, her breathing is better, her spunk is better, the brightness in her eyes is even more sparkly. We are looking forward to a nice relaxing weekend, and getting back into the groove of life! Phew! I'm sure thankful for LPS giving me the time off I needed, and I'm thankful for all my colleagues for being so supportive and being willing to share their vacation days with me. Again, so often I am humbled at how amazing the people in our lives are. We are so fortunate!

11-10-10

We are home and doing well, over all! I'm so tired, it's all caught up with me and I'm having issues pulling up words. We have had mountains of supplies delivered, so I'm trying to dig out and figure out where to store supplies. Quinn is doing well. She is figuring a few things out. Chrissy came over today to play with her, and she said Chrissy with her new talking valve! AWESOME! We still have some stuff to figure out, but we are doing well. A few more appointments over the next few days and I'm hoping for a few naps and good nights of sleep! I've got some great pictures of Quinn smiling like crazy! Lots more stories, but right now I just don't have the words. Doing great, just tired!
blessings!
Susan

11-7-10

Well, we are stuck in limbo, to a certain degree. Quinn is doing so well in so many ways. Her cough is amazing and strong, she is smiling when she is feeling good, and kicking and moving so much more and that is wonderful to see. On the other hand, when she starts coughing, her trach seems to be rubbing against the back of her airway, and if she coughs for very long, it moves the trach back and forth against her airway wall, and causes it to bleed. Watching her struggle to cough for 45 minutes and have the last 10 minutes or so bloody, is frustrating, at the same time, it’s good to see her getting the stuff out on her own, so it’s such a mixed bag. So we are now figuring out if we need to do more of a custom trach that will not rub against her wall, or see if once things heal more, we won’t have this issue. It sounds like custom trachs are a pretty usual thing. So I’m saying some prayers that all the folks here can figure out what is best. After the bleeding, we are not sure if we are going home Monday or not, so currently we are in limbo. Over all Quinn looks great, and when she is not coughing, she is just wonderful, and we could party! However we still have some questions on what needs to happen before we go home. We are also going to do a swallow study before we go home, so we can feel comfortable feeding her by mouth, just a bit here and there for now. So we will see how that goes. I’m still more then grateful for tackling this surgery, it’s just hard to see, 8 days after surgery a smallish complication. It sounds like there are a few different things we can do to make this work, so we are just waiting to figure out what to do to fix this issue.

11-5-10

Here is her Passy-Muir Speaking Valve, the little purple thing on her trach, and she has been having fun with it. Smiles all day, or at least 90% of the day. She thought it was pretty cool to have her voice again, but it did freak her out with her breathing just a bit. It also made her start drooling, because she has not figured out she can swallow with it on. Well, after singing for a bit, the most fun she is having with it is: taking a really big breath, and blowing it off so it flies across the room, and mom has to go get it. This has been going on again and again. It is normal for kids to have to get use to it, and it's normal that they don't love it right away, so she is doing great wearing it for a good 10 to 15 minutes right away, and then she sucks in a nice deep breath, and the passy goes flying! Hey it's making for a pretty exciting afternoon, and that being a good excitement, nothing to crazy, just a fun afternoon of learning.


Well, is it to early to be thinking of halloween costumes for next year? We already have a great idea, this picture is the clue to what it's going to be. A sweet as can be little character, and she is precious and amazing, just like Quinn. Annette and Chrissy came to the hospital last night to do their first trach change, and it went great. In fact she is still coughing a lot, but she has not needed any pain meds yet today, so we are starting off on a great note!

11-4-10

Here is Grandma Vicki giving Quinn a massage after a nice bath.
Here are a couple shots of Quinn where you can see the trach better. It will hardly ever be open. During the day it will have a little valve that helps her airway so she can talk, or a "nose" that helps keep her throat moist. They are not her best pictures, but are good at showing our newest addition.
She is just as lovable as ever! In fact lots of nurses and doctors are falling in love with her, as she is pretty amazing!

Well, we are now 6 days out of surgery. Today was the best of times and the worst of times, ok, so maybe it was not that dramatic, but it was her worst morning, when she started coughing and did not stop for over an hour, and through her tears, she kept coughing. While you would never believe that this afternoon, as she was great, smiling, and resting and relaxing so nicely. That will change soon, as Chrissy and Annette get to do her first trach change, not that they will hurt her, but it's still scary for her to understand what is going on. John and I do our change on Saturday, and it looks like we will be going home Monday, to be met with Home Health to work on all the new machines. Then we have a few days with Home Health, doctor visits, and hopefully finding a great calm pattern that can continue for a long time. We will then see if we are ready to start school, or see if we need a little more time to heal up, we will see what the doctors and Quinn say. Sometimes not having a crystal ball is a very good thing. I am learning how to be thankful for every day.
Blessings!
Susan

11-3-10

Well, we are 5 days out of surgery today. The doctor changed her trach this morning, and she went from feeling nice and calm to turning into a tomato, even her ears were bright red. She has even figured out how to scream and cry, past the trach without any special valve. Wow, I have not seen her so mad, for a crazy long time. After about an hour she calmed down. She is doing good on less pain meds and I even caught a smile, as grandma Vicki was playing with her balloon and she was loving watching them bounce together.


You can still see humidity hooked up like a necklace but we are going to be getting off of it soon, at least during the day. With her trach, she did have a little bit of breakdown on her neck from the plastic holding the trach. So now we are keeping an eye on that. Over all we are still so glad this has taken place, that smile just shows us how much better she is doing. I'm hoping to get a nap in this afternoon, as I am exhausted, and while Grandma is still here, I better take advantage of the time.

Over the next few days, we are going to get a few of us trained. We have watched a video that is wonderful. It does not talk down to us, while at the same time does not talk above us, and the little girl in the video is wonderful and feisty, and so it was great to watch. I'm super comfy in doing the suctioning, and ready to do the rest with changing the trach and all, so feeling good about that. We are getting ready to use the Passy-Muir valve, to give Quinn a way to talk again. Even though she has always been very selective in who she will talk to, I'm ready for her to get her voice back, and thanks to this valve, she will, as long as she can tolerate it, and I'm praying she will. So after we both get a good nap in, we move out of PICU and back to the 5th floor, we will start working with the new valve, and we have finally been ok'ed to pick her up again, which is great! Honestly I have not yet, because I'm so tired, that I don't feel confident in doing that, because I'm so tired. So I'm hoping that by this evening, we will be rested, and working on talking, and just doing great!
thanks for checking in!
Susan

http://www.passy-muir.com/?gclid=CKifttSjhaUCFUS4Kgodw0iSPA

1-1-10

Wow, today was the day for visitors! Chrissy, Jen, Summer, Shelley, Glenda, Superman, ScoobyDoo, Snow White, the Evil Queen (who told us she was no longer evil), and the Cat in the Hat. It was a busy day, that might be why Quinn has chosen not to take a nap today! She has not wanted to miss anything, and any sound our bump has her awake and fighting hard to stay awake. She has been more snotty today, as to be expected, and so while she is doing so good coughing, her throat is hurting and each cough makes it hurt more. So all in all we are doing good, just a few bumps along the way. Well she did not want to sleep through the night either, and kept fighting it, so finally I gave in and crawled in bed with her. On the 5th floor it's no big deal, but in ICU it's a little more difficult, as so many more folks are in to check on her, but I'll do anything for her, even if it means I have folks smelling my bad morning breath, or reaching over me to help her, but after hours of her not falling asleep, less then 10 minutes of me in bed with her, and she was out, and slept great. I'm glad my mom is coming today, as I could really use a nap, but it was well worth it to have Quinn do such a great job sleeping, finally!

Oh, I had a moment yesterday, as I was walking down to take a much needed shower, there was a mom or grandma who ran out of a room, saying nurse, we need help, he is not breathing, he is not breathing, breath, breath! Wow, that brought me back to about 3 years ago, when we were on this same floor, one room away from where we are right now, and the feeling I felt. I sat on the floor of the shower room against the door, holding my breath, waiting to see if they were going to call a code. They did not, which means he started breathing again on his own. It's crazy how a similar even can bring back emotions from so long ago, that you pushed out of your mind. So again, I'm just so thankful for our calm stay this time, and that a code was not called on the other sweetheart in the ICU. I'm learning all kinds of things about trach's and how great they are. Quinn is just doing so well and it's wonderful to see! Thanks for the prayers they are working great!