And there is no night two....

Emily did pretty well last night sleeping without her oxygen.

That is unless you count the twitching and jerking all night long. I don't think she rested very well, which is pretty typical of what she does without oxygen. I really wish I had a better understanding of why, but I don't. But anyway, her sats stayed up (93-98, mostly in the 94-96 range), and she never really appeared to be in any acute distress.

This morning she got up for school without problem, got dressed, and I even asked her how her breathing was. "My breathing is pretty soft," was her reply. "Soft" meaning the opposite of hard which is how she describes it when her breathing gets bad. Respiratory rate was mid 30's, so I sent her off to school where she remained for 5 hours.

At 12:20, she returned home. Crying screaming tantrum girl had taken over! Spent the next hour listening to her wail because she wanted milk, I put it in the wrong cup, Braylon was looking at her funny, Ashton was supposed to be at school (he was home sick today), she didn't want to stay with Aunt Bridget (I had an eye appointment), that I am HER Mommy and it isn't fair that she never gets me to herself. And then she admitted it, "My head hurts, my belly hurts, I feel too tired, and I need my oxygen." I think pic below says it all!


I carried her back upstairs with her little arms clinging around my neck, checked her sat, and it was 97% (very good), but her heart and respiratory rates were up
(170's and upper 50's), so we put the oxygen on. She cuddled up on her bed for only about a half hour with her cat and favorite doll, and she was happier almost immediately. Then Bridget came over with Daisy and Lilly, so the oxygen was off again.

I did take her to cheerleading tonight, which went better than last time. She cheered for about 5 minutes, then stopped and pouted on the ground. She cried most of the way home and fell asleep right after supper.

I went ahead and put her oxygen on her tonight, and she looks much more peaceful. Her respiratory rate is 22 breaths per minute, her pulse is 82, and her oxygen saturation is 98% on 1/2 liter oxygen. And none of that twitching jerking stuff, she's out like a light!

I wish I had a better understanding of the physiology of what is going on with her and why she can keep her sats up without oxygen, but at the expense of everything else. If you recall, during the time Emily was off oxygen at age 3, she barely spoke at all, was weak, tired all the time, vomited multiple times day and night every single day, and was just not well. That and she practically lived with "pneumonia." A little oxygen turned all that around for her, and while I would like it if she could get rid of it, I just don't know when or if that will ever happen for her.

So our little oxygen weaning experience has failed yet again, this time even quicker than the last. But last time, she spent several hours wailing, and I didn't want to push her that far again...not sure my ears could have standed that! At least we did try, and now I know what to tell the doctor on Monday when he asks.

Night 1

Night 1 of sleeping without oxygen:

"Emily, are you going to be able to do this?"

"Yeah, I think so. My belly hurts, but my breathing is okay."

Relaxed resting in bed (but awake) respiratory rate was 34, pulse 118, O2 sat 98. Looking good!

She kissed Mommy goodnight, lots of giggling with Braylon, then off to sleep.

Midnight, went in to check her, and she still looks good, but she is starting to show little signs of what she does. Respiratory rate down to 25, pulse 98, and O2 sat is 94-96. Still pretty good. Thing is, everytime the sat drops to 94 (about 3 times per minute), she jerks her hands and legs (a lot like a baby with the startling reflex) which increases her pulse to the 110 range and increases the sat to 96.

Otherwise, she looks good. Not sure how well she is resting with all this jerking, but she looks good. Fingers crossed!

Cooler Weather at Last!

This is a picture of Ryan and Emily taken when Emily was supposed to be cheering. Note she is on the ground playing trucks instead, and in this pic, Rhino is actually saying, "Emily if you aren't going to do it, then I'm going to take your spot." And he did too for a couple of minutes, til Dez ran him off by kicking him. Gotta love the Rhino!

This is a picture of Emily and her cheerleading team. Emily is the shortest one in the pic, 4th from the left.

This is a picture of Dez and Emily getting ready to cheer in their first game.

And this is Emily's favorite part of cheerleading, making posters! Maybe I'd be better off to enroll her in an art class instead! :-)

And yeah mom, sorry, but I've just gotta include this one! This is an adorable picture of Braylon kissing his Mawmaw through the fence at the football field!



As you can see, it's been an exciting but busy month! Emily had her fifth birthday and Ashton had his tenth birthday all within six days time! Wow, hard to believe how fast my babies are growing up! Emily's health is stable right now, for which we are very thankful. She is still breathing fast and hard (as she always has) and still has issues with pretty bad breathlessness during activity, but she's stable. The other kids have had recent ups and downs (mainly asthma related stuff and viral illnesses), but we are getting through that as well. Ashton and Ryan are both doing amazingly well at school this year which is wonderful to see! Emily is also very happy to be back in school and is doing well, having only missed one day so far this year, and that was just because she refused to get dressed for her dad because she said she had bad breathing that day. So just an "off" day, not a real illness. Knock on wood, hope the good health continues!

Braylon and Emily have an appointment with their pulmonologist next Monday, and wow, I'm already getting nervous about that! I know it sounds silly to get so nervous about an appointment that is basically just a check-up, but it seems like I never know when "just a check-up" is going to turn into something much more stressful, and I feel like there is a limit to what I can say at the pulmonologist's office also. A misunderstanding between the doctor and me just about led me to a nervous breakdown a few years ago. (No, I'm not exaggerating either.) So for back-up, I'm bringing Bridget to help me handle both Braylon (and Braylon's super loud crying) and Emily so hopefully the doctor and I will be able to hear and understand each other well, and also hopefully Bridget will give me a little extra backbone. Don't know why, but I always need a little extra in that department when dealing with specialists. :)

I'm on vacation this week, and since we are still having insurance issues and apparently don't qualify for any additional help either, and since the cost to continue to rent her medical equipment is so much, I am hoping against all odds that since the weather has cooled down to a more comfortable range, maybe this might just be the time when we will finally be able to wean the O2, right now before flu season hits. She's five now, and if it is ever going to happen, now would be the time! And if not, then at least I'll have it documented in writing exactly what happened when we tried to wean her, and it'll be recent enough (since her appt is Monday) that maybe the doctor will be able to help us line up something else. So that's the goal...no, I don't see it happening, but we're going to give it our best shot and see how long we can go, and document vitals AND behaviors along the way, starting tonight! Wish us luck!

Other things I hope to gain from the pulmonology visit...Braylon's chest is beginning to look a whole lot like his sister's, with the protruding sternum, sunken ribs, then flaring ribs at the bottom. If Emily's grew like that due to her lung disease, then what are the odds that Braylon's is also growing that way due to lungs. Right now, he has a diagnosis of chronic lung disease of prematurity, which has always seemed a bit odd to me since other than mild retractions, he never had respiratory issues at all until he got RSV at ten months old. He was a 3 pound preemie and was only on the vent 1 day and on oxygen 1 day and always had an oxygen saturation of 99-100% even throughout being severely ill with NEC as a young baby. He was always fine til the RSV, and only then did he have to do oxygen for a while. The pulmonologist wanted to do an IPFT a few months back, but it was cancelled due to illness, then wasn't rescheduled because he seemed to be doing so much better. I'm kind of wondering if we maybe should consider rescheduling that, just to be sure. He has become quite the fast breather lately as well, although probably still not fast as his sister. Also there has been recent worries by the ped that Braylon has fallen off the growth charts despite very good eating, so we are giving him Pediasure to help that. He has put on a couple pounds since then, but why would his growth have halted after finally having some good catch up growth?? I mean he was tiny for a long time, but once he did catch up, shouldn't he have held to the chart? Of course that may just be some excessive mom worrying. I'll admit it, I do worry about my babies!!!

For Ashton's birthday, we surprised him with the thing he has been wanting, the DSI. Probably the last kid his age in the county to have one, he was soooo happy! But with a perfect progress report, how could we not reward that??

And our little Emmers wanted a baby doll that looked like her! She ended up choosing her own...a brown haired brown eyed doll that she named Emma Lee. Imagine that! :-) That's our girl! I'll put pics from birthdays on as soon as I get them onto the computer.

Until next time, thanks for checking in....

But she doesn't look sick!

This month will mark a few milestones for Emily. First of all, the child who was not even expected to survive her newborn period will be turning 5 on the 29th. I can't even begin to put into words how special that is. When Emily was a baby and was not doing well, we were not given much hope that she could survive. Okay, that is putting it a little mildly. To rephrase, the doctors had everyone, including me, convinced that Emily's survival was virtually impossible. I mourned the milestones we would never have while praying the doctors could somehow be wrong. After days of that, I even resorted to bargaining with God to let her have just some of those milestones and we would fit all the living we could into whatever time we had. At that point, it became about quality of life more than just quantity. I think we have done a fairly good job with that, encouraging Emily to live life to the fullest and to never be afraid to try new things. And we've been so blessed in that she has done better than anyone ever could have predicted. Her lung disease is now stable, and while she is not exactly normal, she is not going to get worse and is going to grow up and live a full life, just one with obstacles. Obstacles, we can deal with! We feel so blessed!

Other milestones, Emily started a new sport last night...cheerleading! No kidding!!! (See pic above.) Our little wrestling tomboy is now a cheerleader! BUT don't let that fool you, she is still first and foremost one of the boys. I must say that I am so proud of the way she handled herself last night! After practice, we were waiting for Ashton to finish with his football practice, so she went a few feet off to play with some of the other little girls. Definitely the smallest and youngest in the group (other girls were in the 6-8 year old range), she was a follower for a little bit, but then she surprised me. When the group of girls started picking on a little boy because they thought he was wearing a diaper, Emily turned on them and actually pushed the girls off the boy with Ryan and 2 of his friends there to back her up. Not something I expected, but I was pleased to see this side of her emerge. Her explannation was, "I like to cheer with those girls, but they were bad to that boy, and that is not nice. They wanted to pull his pants down in front of everyone, and I was not going to let them do that. They are bad girls!" Could it be? Our little Emmers is well on her way to becoming a good person, taking up for someone else!

Then today Emily returned to her final year of pre-school (pics above). She was so excited! It was a really big day for her, and she met lots of new friends and saw a few old ones too. She got to play in her classroom, go out on the playground, get on the bus and look around, and even have a snack! By snacktime though, I think she was at the end of her rope and really could have used some oxygen at that point, but she suffered through it. About 2 minutes into snacktime, she burst into tears because one of the little boys (now get this) blew on her. That's right, he puffed his cheeks out and blew in her general direction, and Emmers cried about it.

Melting down over nothing...That is a pretty good indication that Emily needed oxygen! She also had those black circles around her eyes and that skin that screamed, "I've had enough." The thing is, we don't have a doctor's order saying she can have oxygen at school. Reason being, Emily doesn't always need oxygen during the day, and the doctor hopes she can get by with just an inhaler at school with the hopes that she will continue to improve. I am really thinking more and more that we should consider having it at school just in case, for times like these (and for times much worse than these when she's surely going to be treated for "asthma"). I am going to discuss it with her pulmonologist at her next appointment, but not really sure how that will go over with anyone.

Emily just looks so good, and I hear over and over from people who don't know and don't understand her lung disease that she doesn't look like there is anything wrong with her. But watching her breathe, I can't even imagine breathing that way for an hour, and she does it all day every single day. Attached video is of Emily just breathing last night. Granted, this is lots better and much much slower than it was in Emily's younger days, but this still isn't the normal way to breathe. This is 22 seconds of video. Look at her neck. How many breaths do you count? If I had to do this for long, I'd be crying for oxygen too! But "she doesn't look sick"??? Maybe not! We work hard at helping her not look sick! That doesn't mean her disease has magically gone away. It is still there, and over the years, we've come to view oxygen as a way to help her not have to breathe like this, as a way to help her feel more comfortable, not as a sign that she is somehow sicker. I just wish the rest of the world could see that too!

August 28, 2010

Pics above are of Emily taken a few weeks ago. She found a wounded butterfly and was attempting to love it back to health. Love the one with her hugging the butterfly! That's Emmers for ya!

I signed Emily up for cheerleading today, and she starts in September. Can't wait! Funny to think of my little wrestling tomboy oxygen princess as a cheerleader! Very exciting!

On the sign-up form, they made me sign that she was of "normal health," whatever normal is anyway.... I guess that other than her lungs and tummy, she's A-OK normal! I signed the form at any rate as I am fairly sure it is just a formality that I'm not going to sue them! Madison is a small town, and I know people know she has issues, and most people have seen her on oxygen. I guess we'll see how it works out. I can't imagine that she's going to get anymore roughed up than she does in wrestling, and it's not like I'm ever going to be too far away from her! If there is an issue, I'll just pull her out and put her oxygen on her, ya know.... I'm sure that's what asthmatic kids do, come out to use an inhaler. Well Emmers might have to come out to use oxygen. I don't think that's too different in the eyes of a lot of people, is it? Or maybe it is, but there is no way I'm going to tell her she can't be a cheerleader just because she has bad lungs when her doctor says that exercise is her best medicine! And there is no way I'm going to deny her oxygen if it comes up either, just to keep her looking "normal" for the people up at the complex. The heck with that!!!

I took the kids to the football field today for the jamboree. Ashton's team won both their little mini games which was great to see! Great job Madison White! In my haste to get 4 kids, water, the stroller, lawn chairs, diaper bag, and breakfast out the front door, I forgot the oxygen! Of course sitting up in the hot sun, Emily had a spell when she did need the oxygen. She got really out of breath and sat on my lap whimpering and panting for several minutes saying over and over that she needed oxygen, but she finally got okay. I am definitely going to have to be more careful in the future!

Tonight the kids have gone with my mom to Louisville for their cousin Aleah's birthday party. That should be great fun for them!

In other news, Emily is no longer anemic! In fact, her hemoglobin is now on the other end of the spectrum and is almost high at 13.8! It was almost 4 points lower less than a month ago! This doesn't really surprise me as it seems that we have finally gotten the nosebleeds under control, and also her hemoglobin has always been rather high due to compensation for her lung disease. Blood with more hemoglobin in it can carry more oxygen. Another way Emily's body works around having damaged lungs. Whatever works!

Emily will be going back to school soon, and she is soooo excited. She's already planning out what she will wear and who she will get to play with. She can't wait!

Other than that, not much to report. The boys are back to school, Denny is back to school, and I'm working as always, although I did get my hours cut a little! Braylon is doing well, a bit underweight so the doctor has me actively trying to fatten him up, but otherwise, he's doing great, jabbering up a storm always eager to learn new things.

All in all, life is pretty good right now! The usual worries, money, kids' health, etc., but (knock on wood) we are really enjoying some good healthy months! Thanks for checking in....

Got Milk????

Above are pictures from the fishing tournament last week. Ryan got the biggest fish of his age division at 9 pounds 6 ounces, and Ashton won his age division. They both had a fabulous time, and Emily and Braylon had a great time watching the boats from the river bank! Huge thanks to the Chelsea Bassmasters for all they did so that area kids could have such a fabulous experience!

I took my older boys to the doctor yesterday for physicals, and it was a total nightmare! I won't get into it (and the boys are fine, just bad behavior), but I'd have rather taken kicking screaming crying Braylon to the doctor. At least I am still physically stronger than he is. I am so embarrassed!!!

As for Emily, I am again convinced that milk is the source of her GI issues. We've tried her off milk before without much results, but maybe we were missing hidden sources of milk, I don't know. But anyway, what I do know is that yesterday when I got home from work, her belly looked great. It was so soft and normal looking, I couldn't believe it! We were out of milk and had been for two days. I went to the store last night, and by bedtime, her belly was round and hard.

Then this morning, she came to see me in my room bright and early to say that she wanted yogurt for breakfast. I looked at her tummy, and it did not look too bad (bigger than yesterday afternoon, but fairly soft). I gave her one of the little Scooby Doo yogurt squeeze things, and nothing else. Within a half hour, her belly was hard as a rock. Going to try her off milk again, and see how it goes.

She is still having nosebleed issues, but we are trying a new product (thanks Stefanie), and hopefully it is starting to help. About an hour ago, she told me her nose was hurting and felt like it might bleed. I put some of the gel up in there, and there was definitely blood in her nose, but it did not pour out like a faucet like it normally does. I am hoping that might be a little sign of improvement!

Today, we are taking the kids for a picnic (and probably a swim) at Hardy Lake. Emily is already breathing hard, so we will definitely be taking oxygen.

August, 2010

Not too much to update....just more of the same. Summer is here, and with it has come the heat and humidity. Heat index of 115+ degrees. Way too hot for normal healthy people, but Emily in particular does not seem to be handling the hot weather very well at all! A few minutes outside, and she is just so breathless. It is sad to see her struggle with this, especially as she wants so badly to just go outside to play.

We have had a few decent days, and we were even able to take her hiking a few weeks back (picture above). But with the super high temps the past few weeks, even short walks down the street are out of the question. I did give in and took her for a little walk on Monday morning, and we weren't a block away when she said her oxygen wasn't blowing hard enough. I turned her up, and she only made it almost another block when we had to put her in the stroller and wheel her back home. Her legs were shaking, and she literally looked like she was ready to collapse. It is just too much for her.

In other news, we did find out a few weeks back that our Emmers is anemic. She is now on vitamins for that. As for a cause, we will assume dietary (although Emily eats everything), but as she is having so many nosebleeds lately (several the past few weeks, another 2 today), I have to wonder if the nosebleeds could be contributing to her anemia. Makes sense that it could be anyway. These aren't exactly little nosebleeds.

GI stuff is still messed up too....no more puking but big belly (VERY big belly after meals), frequent undigested poops, abdominal pain that often leaves her screaming and shaking after she eats, and something yesterday that looked suspiciously like blood in her poo (hoping she just ate something red). The boys have their yearly check-ups at the doctor this Friday, so I am going to bring it up to the pediatrician again then.

Hopefully we can get her all straightened out soon because it is back to school in a couple weeks!