11-28-10

AS I was getting meds and supplies ready for the week, I thought it might be interesting to share. I am excited to make our home a home and not a hospital, with everything out of site. Right now, most of it is covered up, but not all of it, and that is the way it is, and it's worth every bit of time and effort it takes to keep it organized! So here you go. Supplies and meds that I have worked with this morning for the week.

So now we are set for the week, let's hope being organized with help us continue to heal up and get to school. Blessings!

11-26-10

Here is Quinn taking a nap, listening to her headphones. I love technology, and am already getting Quinn hooked on it too. She loves music and does such a great job staying relaxed when she listens to it. She loves toddler music, meditation types of music, classical, blues, and lately she has been loving holiday songs.


Blessed are those that can give without remembering and receive without forgetting.
-- Author Unknown

What a great quote, and our little family is trying our best to follow through on that. Especially now, with it being Thanksgiving! We have so much to be thankful for, and with being thankful, we also want to do just as good of a job sharing our love and talents with others. I’m looking forward to continue to pay it forward with all the love and caring folks who are involved in sharing their love, and talents with us.

Another thing I’m thankful for is snot! Yes, that is what I said. Wednesday we went to see Quinn’s ENT, and he said Quinn was looking great. I mentioned how I only had to use the catheter once over the weekend. We use catheter's to put down her trach and suck up the snot. Otherwise, with her cold, she was coughing up all the snot on her own, and Dr. Sewell, sat back and giggled. Quinn blew him away, because she is strong and doing great with her cough. She still is full of snot, and did not make it to school because of all the snot, but she is sure doing great at coughing it out! So I’ll be grateful for that strong cough, and Benadryl.

I’m hoping that she can start back to school on Monday, as every day she has gotten stronger, but she still has a good cough and is taking long naps, but we are getting there. So I’m also thankful for these couple days I have had where I can hang out with Quinn and love her up!

So Happy Thanksgiving and thanks so much to all of you for reading and sharing in our lives!


Gratitude helps you to grow and expand; gratitude brings joy and laughter into your life and into the lives of all those around you.
-- Eileen Caddy

11-19-10

We have posted a new video of Quinn, from 2006 to the present. We also posted a downloadable post on Quinn's history, medical and miracle moments! It's some of the info going into Quinn's House information, but still does a good job sharing her wonderful moments! If you want to check them out, or a few other things, go to:
http://isite.lps.org/sotte/web/quinn.htm

Here is Quinn a few moments ago, sound asleep, but she finally broke her fever and is sleeping nicely! I mention soon, how it is getting so cold, yet I have her in shorts, but it's because she has been so warm!

Quinn is such a trooper, she was not feeling great here, yet she still keeps smiling! We are so lucky to have a daughter with such a good personality! She is just amazing!
Happy Winter! It is getting cold here! Actually colds all around! It’s cold outside, and I have to say that our windows in our apartment are not great, as we sit 5 feet away from them, and can feel the cold air blowing in. I will also say they came to fix them, but so far, it’s not a huge difference. So it’s cold outside and sort of inside. Then to top it off, Quinn’s got herself a cold. She went back to school early in the week, and now she has a nurse with her at school. I’m a bit worried that we might be loosing an amazing Para, but I’m not sure of that, and so far I have not had a definite answer to that question, so I’ll keep hoping for the best. At the same time, Quinn’s new nurse seems very kind, so we will see what happens. It’s just so hard to loose folks when they have gotten to know Quinn and in turn she loves back.

On Wednesday, Quinn does not go to school, so she can have a bit of a break, as she works so hard when she is there, it’s nice to rest up for the rest of the week. Well, Chrissy took her to see our primary doctor for a follow up trach appointment. Dr. Swisher was very impressed with Quinn. In fact he said he shed a tear to see her looking so good, and Chrissy said she saw a bit of a dance he did for Quinn as well! Yeah for improvements!

At the same time, there are always setbacks, and today Quinn did not go to school, as she came down with a cold last night, and could not stop coughing. So we went back to the doctors again, and lucky for us, we did not have to go to the hospital, instead we got a new med, and she finally had a pretty good night sleep! Talking about sleep, I’m lacking it, and Quinn is too, so we are hoping to rest and relax this weekend and get better! We are missing out on our family Thanksgiving, missing out on spending time with my wonderful nephew Kaleb, and my new nephew, but once we get this cold behind us, we will get up to spend time with Grandma and Grandpa and hopefully the boys as well.

One more of our big celebrations is Chrissy, I know I’ve said it before, but she has taken Quinn to doctor appointments and put up with a hard day on Thursday, with Quinn coughing and throwing up. She also gave up some of her events to take care of her Friday. We have been fortunate to have amazing folks in our lives who have impacted Quinn in so many wonderful ways, and we are so grateful, but again, as I was talking to the Zeman secretaries about Chrissy, I was again reminded how good we have it! Thank God!

Again, a negative, is that we ask for prayers for Matthew! He is a little guy that we met through a few friends, and I am a devoted blog reader of theirs, and he is the one that was at Children’s when we were this last time. He is now in Minnesota fighting hard to survive and overcome this difficult time, He and his family are amazing. I pray for them and their journey, at the same time, they remind me, how thankful I should be, instead of being frustrated Quinn missed school today. I’m just grateful she is home and not in the hospital. Sometimes it is easy to feel sorry for ourselves, but I sure can’t go there, because I see what an amazing gift we have with our lives. We have our struggles, but we have it good!

We continue to find things out about our soon to be - Quinn’s House, and continue to have things going on behind the scenes. We have some angels involved in working hard to help us. I’m getting so excited to start sharing information, but just can’t jump the gun. Just to say again, that I’m grateful and humbled and so excited to be part of this upcoming experience.

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!