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!
Thursday, September 23, 2010
Wednesday, September 22, 2010
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.
Tuesday, September 21, 2010
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!
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!
Thursday, September 16, 2010
9-16-10
Yikes, I'm not going to delete my last post, as that is how I was feeling, but after reading one of my usual blogs on another special kiddo, I am heart broken to hear what they have been through, with their little guy being sick, and then having more issues happen to him in the hospital by a person who made a very bad choice. Oh, my heart hurts for them, and I once again am reminded how good we have it, as we are not in the hospital, and instead I hope to have a relaxing evening, sleeping cuddled up next to Quinn, just to make sure she keeps breathing calmly. I send prayers to that special family, and ask us all to be thankful for our health and remember not to take things for granted!
9-16-10
Well, I think I do a pretty good job working through my stresses, but when I’m sick it is so much harder. Over this last week, I have been sick, and Quinn has been sick. Quinn’s breathing has not been great by any means, so I’m so thankful for Chrissy watching Quinn during the day, with her loud breathing, as she did not make it to school at all this week. I almost feel like going to work has been my stress reliever , as the last few nights have made me so crazy nervous. I’ve missed my Better U meeting and a number of workouts. I found out our house has radon, and it’s lots of money to get it fixed, but we will get it fixed! Then I find out I have to skip another meeting today to take care of Quinn. Talking to our banker, it’s going to cost us more money for the building then I planned while we are renting, probably! I’ve started looking at apartments, and it’s not very fun, in fact it’s stressful too. So today was my final straw. I get home, after staying late at school for a meeting, getting to Handprints late to pick up Quinn late, luckily Mary was willing to watch her, and is so good with her. Quinn had no nap and was tired and breathing super hard, and I got my treat of French fries to eat when I got home. I pull into our driveway and go to open the garage, and it does not open. Quinn is freaking out in the backseat, and I am exhausted, now the garage door does not open. So I go into the house through the front door, and find that our second Radon guy that was going to give us an estimate locked the garage door on the inside, and since I was not aware of that and pushed the open button on the remote, now I can’t get the door unlocked because of how the door is partway open and stressing out the metal where it is locked, it will not close or unlock. So now my one treat for the week, is cold, Quinn is still freaking out, and I loose it! Ironically a friend at school today just complimented me on being so calm and under control, yet I have a hammer and I’m pounding on the garage door, I call John and swear on his office machine, and I hardly ever swear. I then call his mom, and start bawling on the phone, and have a complete melt down. Quinn and I having a double melt down in our driveway is not fun!
Well, I called the Radon guy to ask why they would have locked the garage door, and they have not called me back. I have to say I was crying on the message I left, because that is who I am, not that I like it, but I was. I did get the garage door fixed on my own, and did not even break anything. I got Quinn into the house and into bed and she is asleep and sounding much better, and it’s not even 7:00, and I’m going to bed shortly. I only had a couple fries, as they were cold and not all that great of a treat, but that saved me some calories, and throwing a fit had to have burnt a few calories too.
After loosing it, I have to say I’m still so fortunate! We are still planning on building a house, with a great support system. We will find somewhere to live, we have a few guys willing to help us move. We have made it through the hardest part of our colds, (I hope and pray) I did not have to take any time away from school. John has been very supportive, and I have the most amazing little girl resting comfortably next to me. So no matter how stressed I get, I need to take a few deep breaths and remember – I’m only handed what I can handle! – and I’m pretty lucky! Just look at my sweet little girl!
So I pray we continue to rest and feel better! I pray that her breathing calms down, and she figures out how to breath through her mouth when she has a cold, that would fix so many breathing issues she has. I pray that I feel better, and continue to stay calm and cool, rather then stressed and freakish. On that note, I’m going to get some sleep, as I know that will help everything!
Well, I called the Radon guy to ask why they would have locked the garage door, and they have not called me back. I have to say I was crying on the message I left, because that is who I am, not that I like it, but I was. I did get the garage door fixed on my own, and did not even break anything. I got Quinn into the house and into bed and she is asleep and sounding much better, and it’s not even 7:00, and I’m going to bed shortly. I only had a couple fries, as they were cold and not all that great of a treat, but that saved me some calories, and throwing a fit had to have burnt a few calories too.
After loosing it, I have to say I’m still so fortunate! We are still planning on building a house, with a great support system. We will find somewhere to live, we have a few guys willing to help us move. We have made it through the hardest part of our colds, (I hope and pray) I did not have to take any time away from school. John has been very supportive, and I have the most amazing little girl resting comfortably next to me. So no matter how stressed I get, I need to take a few deep breaths and remember – I’m only handed what I can handle! – and I’m pretty lucky! Just look at my sweet little girl!
So I pray we continue to rest and feel better! I pray that her breathing calms down, and she figures out how to breath through her mouth when she has a cold, that would fix so many breathing issues she has. I pray that I feel better, and continue to stay calm and cool, rather then stressed and freakish. On that note, I’m going to get some sleep, as I know that will help everything!
Saturday, September 11, 2010
9-11-10
A picture is coming, we are in process of packing again, and wanted to get something on here, if it does not totally make sense, it's because I'm multi tasking!
This week is kind of like our garage, going from being full of stuff we really don’t need, to being empty and ready to be inspected for terminates. Well, I guess that might not be a perfect example, but I feel like we are finally getting our ducks in a row to figure out how to get things done, clear out some clutter in our lives and pay attention to the things that we should.
Quinn had a nice long Labor Day weekend, she was not feeling great, but by Tuesday she was great again. We kept her home Tuesday, and will always keep her home Wednesday’s until she can handle more. So instead of school she supervised the moving of the stuff. Grandma Vicki brought the stock trailer down, and with the help of Grandma Martha, Grandpa Harold, John, Chrissy, and Quinn (just to give myself a bit of credit, I worked from 6 to 7:15 until I had to go work at school) all worked like crazy to pack up stuff that we won’t use while we are in the apartment. Thanks so much! It’s so nice to have a good support system! I keep thinking if we can do without it for a year, we probably don’t really need it, but most of it is artwork that goes on walls or decorates the house, and I don’t want to get rid of that, but I should downsize, it would be good for me and who ever else gets it from where ever we end up taking it. Well, back to Quinn, both grandma’s got to see Quinn ask Chrissy to go potty, and follow it up by going potty! YEAH! I have not seen it yet! I don’t know why she is not doing it for me, but as of now, it’s not something we have shared! I honestly did not know if we were ever going to see Quinn potty trained, I keep hoping for the best, but I don’t know what the future holds, and to have Quinn working so hard at it is just amazing! I’m also excited for her to understand holding it and feeling agitated, and relaxing, to go, and feeling calm and loose, that will help with every day life too. Sometimes she gets agitated and can’t calm herself down very well, so when she figures out how she relaxes to go potty, that can hopefully carry over into other areas of life and relaxing! Nothing like a little potty talk hun? Now to start getting a special potty chair for Quinn to use, as I’m not as good as Chrissy as holding her on the potty for very long amounts of time.
Talking about potty training, one more story. Quinn was jabbering and jabbering at Chrissy’s and was getting stuff together in the kitchen and comes out to see what Quinn wanted, and Quinn had both hands up showing Chrissy she needed to potty – NOW! Then she did! Wow, I am loving hearing this stories!
So Thursday was her first day of school this week. Chrissy got a call around 10:00, it was not a panicked call, but she went to Riley to talk to Quinn, as her breathing was loud and hard. Chrissy got there and started talking to Quinn, and again everyone there sat in awe of what Quinn will do for Chrissy, as she still is not talking to anyone at school, and Chrissy finally figured out that she wanted to go home with Chrissy and play. I have to admit that although that is not a good behavior at all, and I’m so sorry that she freaked a few people out, and is still building trust with the Riley teachers and staff, but she is 3 and testing her boundaries, as to what she can get away with, I’m still proud of her testing her boundaries. Well, Chrissy said that it’s school time and she is there to learn and her naughty behavior could send her to the safe seat, and I hear Quinn was pretty sad hearing that, but made it through the rest of the morning without Chrissy. Sadly for Quinn when she got to Chrissy’s to play, instead of playing, she promptly fell asleep and slept all afternoon, so there was not much playtime with Chrissy on Thursday. There are just not enough hours in the day. Actually I wish I could throw a fit and have Quinn and Chrissy come play with me at school, because I feel like I’m missing out on so much of her excitement, but I’m sure thankful to hear about it, and more then thankful for the awesome people in her life, so willing to love her up and help her be successful!
On that note, have you checked out the Better U page, where I am trying to get healthy! You can sign up to get healthy too! Read our blogs about what we are doing, and learn a few things to help you get healthy too! Check it out at: http://www.1011now.com/betteru and if you want to see our commercial go to facebook and join the American Heart Association – Lincoln group and go down to August 20th and you can see our commercial. I think we look great, and better then that I’m feeling great! I’ve got a long way to go, but I’m getting there!
This week is kind of like our garage, going from being full of stuff we really don’t need, to being empty and ready to be inspected for terminates. Well, I guess that might not be a perfect example, but I feel like we are finally getting our ducks in a row to figure out how to get things done, clear out some clutter in our lives and pay attention to the things that we should.
Quinn had a nice long Labor Day weekend, she was not feeling great, but by Tuesday she was great again. We kept her home Tuesday, and will always keep her home Wednesday’s until she can handle more. So instead of school she supervised the moving of the stuff. Grandma Vicki brought the stock trailer down, and with the help of Grandma Martha, Grandpa Harold, John, Chrissy, and Quinn (just to give myself a bit of credit, I worked from 6 to 7:15 until I had to go work at school) all worked like crazy to pack up stuff that we won’t use while we are in the apartment. Thanks so much! It’s so nice to have a good support system! I keep thinking if we can do without it for a year, we probably don’t really need it, but most of it is artwork that goes on walls or decorates the house, and I don’t want to get rid of that, but I should downsize, it would be good for me and who ever else gets it from where ever we end up taking it. Well, back to Quinn, both grandma’s got to see Quinn ask Chrissy to go potty, and follow it up by going potty! YEAH! I have not seen it yet! I don’t know why she is not doing it for me, but as of now, it’s not something we have shared! I honestly did not know if we were ever going to see Quinn potty trained, I keep hoping for the best, but I don’t know what the future holds, and to have Quinn working so hard at it is just amazing! I’m also excited for her to understand holding it and feeling agitated, and relaxing, to go, and feeling calm and loose, that will help with every day life too. Sometimes she gets agitated and can’t calm herself down very well, so when she figures out how she relaxes to go potty, that can hopefully carry over into other areas of life and relaxing! Nothing like a little potty talk hun? Now to start getting a special potty chair for Quinn to use, as I’m not as good as Chrissy as holding her on the potty for very long amounts of time.
Talking about potty training, one more story. Quinn was jabbering and jabbering at Chrissy’s and was getting stuff together in the kitchen and comes out to see what Quinn wanted, and Quinn had both hands up showing Chrissy she needed to potty – NOW! Then she did! Wow, I am loving hearing this stories!
So Thursday was her first day of school this week. Chrissy got a call around 10:00, it was not a panicked call, but she went to Riley to talk to Quinn, as her breathing was loud and hard. Chrissy got there and started talking to Quinn, and again everyone there sat in awe of what Quinn will do for Chrissy, as she still is not talking to anyone at school, and Chrissy finally figured out that she wanted to go home with Chrissy and play. I have to admit that although that is not a good behavior at all, and I’m so sorry that she freaked a few people out, and is still building trust with the Riley teachers and staff, but she is 3 and testing her boundaries, as to what she can get away with, I’m still proud of her testing her boundaries. Well, Chrissy said that it’s school time and she is there to learn and her naughty behavior could send her to the safe seat, and I hear Quinn was pretty sad hearing that, but made it through the rest of the morning without Chrissy. Sadly for Quinn when she got to Chrissy’s to play, instead of playing, she promptly fell asleep and slept all afternoon, so there was not much playtime with Chrissy on Thursday. There are just not enough hours in the day. Actually I wish I could throw a fit and have Quinn and Chrissy come play with me at school, because I feel like I’m missing out on so much of her excitement, but I’m sure thankful to hear about it, and more then thankful for the awesome people in her life, so willing to love her up and help her be successful!
On that note, have you checked out the Better U page, where I am trying to get healthy! You can sign up to get healthy too! Read our blogs about what we are doing, and learn a few things to help you get healthy too! Check it out at: http://www.1011now.com/betteru and if you want to see our commercial go to facebook and join the American Heart Association – Lincoln group and go down to August 20th and you can see our commercial. I think we look great, and better then that I’m feeling great! I’ve got a long way to go, but I’m getting there!
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