9-30-10

Here is what I woke up to this morning. Instead of her holding onto her ear, she is holding onto the side of her CPAP mask. I love it. You can also see her G Button, that she gets most of her formula through, but now that she is doing better we are going to get back to oral feedings, very slowly, but it’s good to feel like we can start again!

Here are Quinn and Amelia on the hammock at Chrissy’s. They are loving being together again, but not to close together, as they have both been in the hospital this last month, and need to get well! From what I hear they were pretty upset with Chrissy for not letting them snuggle up face to face!

If you could say some extra prayers for Amelia, this was taken a couple days ago, and she is back in the hospital, the pneumonia never totally went away, so we need Amelia to get better soon! On that same note, Quinn went back to school today, and I am a little worried that the germs are going to get to her. So prayers all around would be wonderful!

Well, getting back into the swing of things is such a good crazy feeling! Quinn is doing great, still has the snot, but past that we are thankful! Suzanne, her physical therapist, said that Tuesday was her best therapy appointment yet, and she did some talking for Stacie, talking about her fancy princess bracelets that Amelia gave her. Arial is the one she seems to always start with, so I guess we are going to have to be watching Little Mermaid more often. She is not really sleeping through the night, and then I get worried, is it the CPAP breathing machine, is she comfortable, is she snotty? Sometimes she does a good job telling me, and sometimes she is so tired, I don’t get her to say anything. So we are working on that. Actually last night was her first night to sleep, starting at 8:00 and sleeping all the way through the night, or at least she did not wake me up with weird breathing, or the night before last, she was awake and kept hitting me until I woke up. That is even a big deal, as she can move her arms, but sometimes does not have total control of them, but she got some good hits in to wake me up, and I’ll take each one of them. She was not feeling great that night!

One of the Children’s Home Health guys came and looked at the CPAP machine, and told me that it takes a few weeks for kids to really get comfortable with their machine, so over all I would say she is doing so good. We are both glad to be home, and sleeping in your own bed is oh so nice!

We are getting ready to move this weekend, if all goes according to plan! So it will be a busy few days. I sure hope that our stuff will help Quinn find a sense of home right away in our apartment. I’m a little worried that the move will be hard on her, but I’m going to try my best to be stress free, so she does not feel anything negative from me to work off of, as she does pick up how people around her are feeling and takes it to her heart so fast.

9-25-10

Here is Quinn and our respirtory therapist, working on her percussion, which is basically a heavy duty massager, to help keep her ribcage loose and relaxed, as well as help break up the mucas in her chest to get it out. We will be doing this at home now too. Three times a day or so for 10 minutes.
Look at how much better she is looking! Smiling and so content! I love it!
She finally got some much needed daddy time, and loved it as much as ever! She sang and sang with dad!
Looks like we are going home today! Quinn had a great night! She slept good, she is doing great coughing up that yucky snot. She is smiling, and when dad stopped by she sang and sang with him.

We are bringing lots of stuff home with us! We have new masks for Quinn's nebulizer, we use that to help her keep her throat moist and cough out snot, when we need to. We have her new CPAP mask and machine to help her sleep better. We have her new percussion wand, to help her stay loose, it's what the respiratory therapist is using in the picture above. Then we still have her suction machine, again to help with the snot, and all kinds of meds, chairs, pillows, shoes, braces, I tell you what, we work hard to keep things basic and calm, rather then hospital looking! Even with all the stuff, she is simply a little girl wanting to enjoy her life, and thrive and grow. that is what we want, so we are thankful for the stuff, to help her out when she needs it.

Well, over the next two weeks we are going to finish packing and get moved over into our apartment. We are going to get papers signed this weekend. It's not the perfect apartment, as it has way to much carpet, so Quinn can only use her walker in the kitchen, which is small, but at the same time, the apartment is small, and that means less cleaning, and I will be able to work in the living room and be right next to the bedroom for Quinn if she is sleeping in the bedroom, instead of her being upstairs and me downstairs, which was not ideal at all. So that will be a big plus! Basically I guess with anything, there is the good and not so good with anything! We don't have a garage, which I'm not looking forward to, as trudging Quinn around in the cold and ice is not fun, but again, it's only for 8 or 9 months, then we will have a magical "Quinn's House" if all goes well! :)

So Quinn still has a bit of mending up to do, but comparing now to when we came in last Monday, she is doing great, and we are looking forward to her continuing to improve and get back to her usual days of school, therapy, Chrissy time, and time with us at home. Oh, Chrissy (Quinn's super awesome caregiver) beware, we are going to have to pack a suitcase or something to carry her percussion wand, suction machine, sleep machine for naps, her chair, and regular stuff. So it's going to look like Quinn is moving in, hope you can find some room for all her stuff! She is turning into a little diva, needing all her special loot!

9-24-10

Here is Quinn with one of the respiratory folks, they have been amazing as well as her nurses! They work so hard to keep Quinn improving!

Well, it's Friday and we are still at Children's hospital. The word is starting to float around that we might go home today, but I'm guessing it will be tomorrow. Quinn is feeling better, as I find myself searching the internet more often, rather then laying in bed with her trying to comfort her. My Better U team of girls (http://www.1011now.com/betteru) sent Quinn a little glittery sea horse, thanks Ruth for bring it, and Quinn has been loving it. Her baby doll has been found at the bottom of the bed several times, but she is clutching her sparkly seahorse now.

I'm still thankful for all the doctors checking in on her, they have a few different opinions on what is best for her, and that does not surprise me, as she is a case all her own, and does not fall into any certain group where they can say, oh do this, then this, then this. Quinn makes them all work much harder to figure out what to do. She is breathing good. In fact she was off the breathing machine for an hour last night and did pretty good. She took a full feed this morning, and has been smiling at a few of the nurses. We are going to do antibiotics too, or that is the plan for now. We are still struggling with her secretions (snot), she just has so much of it, which gets in the way of breathing, we are sucking it out when she coughs, but there is just so much, and she is loving her pain meds, and when it's about due again, she is pretty tight and miserable. So we are improving, but not quite there yet. She is taking some good naps and that gives me time to do some stretches, and take care of myself.

One of the things I have been doing is searching the internet for different foundations to help us build Quinn's House. We have an amazing architect and a sweet friend heading up the project, and they have lots of folks on board to "pay it forward" by donate time and help with lots of different parts of the house. Our church is excited about being part of it too, as well as a few other groups. With all that help, we have been talking to the bank about down payments and construction loans, as our savings went to medical bills in the past, so I've been searching out organizations that might be willing to donate to our wonderful little Miracle Quinn, but I'm not having much luck on that front. So, if any of you have any ideas on fund raising or foundations or anything please let me know. I'm not great at asking for help, but we have such an amazing group of folks working so hard on this, that the least I can do is try to help out as well! We are hoping to have a mobile lift, track system, chair lift for the house stairs and car, and a few other things just to help Quinn be successful in her house. We don't expect it to all get done at once, but most things need to happen sooner then later, with Quinn growing and growing. So if anything pray that miracles keep happening, because what we have in place already is amazing, and humbling, but we invite prayers and support of any kind. I am so thankful to have her in our life, and remind us all, not to take our health for granted, and love each other up, as we all have our own obstacles to overcome, so just love each other up! Blessings!

9-23-10

We had a really good night. Quinn fought the machine for a bit after she did so well in the beginning, so I was worried about this morning, seeing how she would do. She did great!

We still have not really talked to doctors or anything, and will be here again tonight, maybe more meds, maybe more percussion on her chest, but even all the snot is drying up and going away! Yeah for that! She smiled yesterday and again today. She is not talking much, she tried this morning, but due to the cpap machine, it's a bit harder to control. So not much to report now, except we are doing better and it's working, and she is doing better, so good report, past that we don't know much, but I'll take her doing well for now and be content with that!

9-22-10

Well, it’s Wednesday, I think, and this is day three at Children’s Hospital. We are now in the PICU, Pediatric Intensive Care Unit, not that that should alarm you, or so I’ve been told over and over. It’s procedure to start kids on sleep apnea machines in this part of the hospital. In fact I just got done sitting in on her meeting with the staff and doctors, and they said that Quinn was one exception that probably could have been made to stay up on 5th floor, but honestly I am ok to be here, because they have lots of stuff ready if we would need anything, so we should be fine.

On a side note, walking through these halls here in the ICU brings back memoires, as I see the cribs in some of the rooms, it takes me back to when Quinn had her heart surgery and the next day where she coded and had so many things happen to her body because of that. I also see a few parents with their little ones in here, and they look so tired and worried, and I feel for them, as I remember that feeling like it was yesterday, oh, I did have that feeling yesterday for a bit, but we are doing much better now. As it’s not great to be here now, but thanks to time and understanding, it’s not as hard to be in the hospital, and at the same time, tonight is not as serious as some of the nights we spend here about 3 years ago. Don’t get me wrong, I know being here in general is not a fun trip, but I know how strong Quinn is, and I have faith in her and the doctors and staff here, and I try my best to give it up to God, to have him continue to help us in our journey.

Over the last day, Quinn has slept a couple great naps, and thanks to the nasal trumpet, she has been breathing great. This afternoon our good friend Chrissy stopped by to keep us company, and I even got a chance to get out and take a walk, and buy Quinn’s Halloween outfit! It’s pretty crazy cute. Now she has her Sleep Apnea Machine and no nasal trumpet and she is doing good, I keep hearing things beeping, which makes my stomach fall, but things seem to be going ok. She is hardly fighting it at all, and it’s a whole new feeling having air blown into your nose. She keeps feeling the tubing with her hand and moving her head around to try to figure out how the thing works, but we have had it on for about 30 minutes already and she is doing great with it. She still is figuring out exactly how to breath with it, and all the snot falling out of her nose, but over all she is doing good. That is a wonderful thing, let’s just pray it continues being a wonderful night.

Past tonight, I don’t know what the case will be, and I’m in no hurry to race home, as it’s looking like antibiotics and a few more steroids are in her future, and another night or two with her sleep machine. If anything it’s good for me to hear what she should sound like with it. Right now she is kind of loud, snoring, but I think more then anything, she is simply trying to get it to work. That is what the respitory folks keep telling me too. The first few hours are the hardest for her to just accept it and let it help her. As for me, I am so tired from the last few days, but I don’t think I’ll be getting much sleep tonight, but at the same time, knowing that folks are keeping such a good eye on her, who knows, I might be sleeping better then I think. So I’m asking for prayers for Quinn to continue to get strong and her breathing and airway to get back to feeling good and labor free.

9-21-10

Well, we went from a couple days ago, where Quinn was not feeling great, but yet not horrible. In fact when she was sleeping, she was holding her ear, which is something that will always be special, as she did that all the time when she was a baby, before our journey took a different path, down the road we are on. So seeing her touch that ear is just so calming and joyful for us! Also check out her chest, I can't take pictures of her chest forever, as that could get me into trouble, but her scar looks so good, so good in fact you can hardly see it!

Then we got Quinn’s new shoes that go over her braces on Thursday evening and Friday morning we were doing pretty well. In fact she wanted to pose for the camera in her new shoes.

We had an appointment with the Pulmonologist (breathing doctor) and I was worried about this meeting. Quinn’s biggest issues come from breathing, and that is a pretty big deal! Well, after talking to him, and crying, we came up with a plan. After Quinn gets better we are going to do another sleep study. We will look into different breathing treatments, a sleep apnea machine, and start looking into a trake, but this is still a long way off, as she does so well, when she is not sick, but we are keeping our options open, as we only want what is best for Quinn. Well, after dropping her off at Chrissy’s, I went to work for the afternoon, and after talking to Chrissy, honestly expecting Quinn to have had a good afternoon, that was not the case, she had a hard afternoon of breathing, and I could not take it anymore, so a call to Dr. Swishers office, and it was off to Children’s Hospital. At first I was not even sure we would get admitted, because they did an x-ray, which appeared to be ok, and blood tests were coming back ok, and her breathing was ok. They decided to admit her seeing that I was a mess, and not comfortable with her for the night, and so we were admitted, and I was not much use to anyone asking me questions, thankfully I’ve got a book with all Quinn’s information in it that they could look at, and after missing all of Dancing with the Stars, we were taken to the 5th floor. We did not have any treatments or anything and then it was sounding like they were going to dismiss us this morning, but decided to keep observing her just in case. Well our calm morning took a turn mid afternoon, as the breathing doctors PA was super concerned with her breathing, I did not think it was really that much worse then this morning, but she was worried, and she got a number of doctors in our room, then Quinn’s oxygen level dropped down below 90 and before I knew it, I was worried, and there was a room full of people in to assess Quinn and talk of intibating and ICU were being thrown around. I was bawling, and Quinn’s breathing was getting very shallow, and she was beyond pale, with a tinge of blue. It was not good.

We did a nasal trumpet, which is basically a big stretchy straw, that goes down her throat through her nose, and as quickly as she went down hill, she came right back to feeling good. She even gave me a couple big smiles, and promptly fell asleep! So wow, what a difference a couple days make. This piece of plastic has simply given her throat a chance to rest, so she does not have to try to breath through a sore scratchy throat. The next plan of attack is after she gets a nice long nap, we are going to go to ICU to get fitted for a sleep apnea machine. Lots of people have them at home; in fact Quinn’s dad does, so some night I’ll have to get a picture of both of them with their sleeping machines, if they don’t care. Well, we will get her fitted, and if she takes to it, that might be just what we need to get her through the hard weeks. I’m thankful for the quick work of the doctors here, and I’m thankful I got her here when I did. I’m more then thankful for Quinn! She works so hard! She works hard on everything she does, and if everyone had the work ethic she did, our world would be an amazing place. As we were getting ready to go to the ICU, I asked Quinn if she wanted to take a ride, she promptly said “no” between her hard breathing. Oh, that hurt my heart, at the same time, it is so good to see her struggling yet still not giving in, and focusing on what is going on around her! She is amazing and I don’t know what I would do if anything happened to her! Lucky for me I don’t have to go there! I will just hang out and sit in awe of her in all of her wonderfulness! I’m so thankful for Children’s, their nurses and doctors, and thankful Quinn made it through another rough patch, with her ump and passion showing through the whole time! Whew, I thank God for a crazy day with Quinn doing so well, being calm, and breathing so quiet and calmly now! Now I can breath calmly too!

9-21-10

Well we are back in the hospital, Children's to be more specific, and it's actually ok! I was exhausted, and Quinn was exhausted, and we both slept a little last night, so today is better then yesterday! Not sure what they are going to do, as they think Quinn has a virus, so we will wait it out for a bit and see what happens!