Trick or Treat!!!

Had a fabulous night trick or treating! Lots of pics!

It was a beautiful evening for it, and Emily did very well! We were able to walk for almost 2 hours (at a slow pace, of course), and I only had to carry Emily a little while toward the end. Braylon also walked this year and was so cute as he was really just learning what he is supposed to do. The first house, he didn't want to go to the door, but once he did and he got 2 miniature candy bars in his bucket, he grinned really big and turned around and ran towards our house. He was ready to eat it right away! When he realized he got candy at every house, he really got into it. I tried to teach him to say trick or treat and then thank you, but most of the time he would wait until he was walking away to say trick or treat. Emily, Ryan, and Braylon also had to stop to pet every single animal they saw along the way. Oh, and they also chased a poor squirrel up a tree. They really had a blast though!

And a huge thanks to the Winters for coming along and making Ryan's night!

Emily's quote of the evening, "Bray-man, I have a really good plan. When we get home, we're going to eat candy until we fall asleep." Braylon was in complete agreement, of course!

And now for the pictures:

This first one is of the 4 kids together in their costumes. Braylon is Woody, Ashton is Peyton Manning, Emily is a princess, Emily's doll Emma is a fairy, and in the back, Ryan is a very enthusiastic cowboy!


Love the expression on Ryan's face!


My sweet little Braylon Case


Ashton, Logan, and a friend as Colts players.


Braylon and Emily


Love this one of Braylon!


Braylon and Mommy


Braylon and Mommy without the glasses


Emily and Mommy


Ryan and Braylon


Braylon with Ryan's drink. Shhhhhh....Wow, this stuff is good!


Ashton and Emily resting on a bench.


Cousin Eli, his friend, and Denny...2 nerd costumes and one natural!


Happy Halloween!!!!

Testing

Emily had her sleep study and chest HRCT last night/today. Sleep study was added on a little last minute, and it was a scramble to get the boys' homework finished, get packed, drop Braylon off with my mom, get Emily supper, and make it to Louisville by 7. I found out about the test at around 3 in the afternoon and was at work at the time (scheduled til 5:30). Home is 15 minutes in one direction, then 15 minutes in my mom's direction, then a good hour from there to Louisville, plus needed time to find the sleep center. Thankfully Bridget was able to get Emily showered and dressed before I got home, and my wonderful boss let me leave just before 4 or we never would have made it!


The test itself went okay I guess. I had some concerns with the way they did some things, but we won't get into those. Emily had concerns with all the wires (see pic above!!). I will say that I watched the little CO2 monitor, and the number I saw most of the time was 44.9. I also saw up to 46.9 (middle of the night) and down as low as 33.9 when she was laughing right before going to sleep. Her respiratory rate itself ran in the 30's most of the night and may have been a little higher on the O2 than off (they used mask oxygen and I don't think enough...again with the technique thing). Early this morning, she did have some rates in the teens off oxygen. Not sure what all these numbers mean or what they're going to say about them...Guess that's why we do the sleep study, so they can interpret this stuff!



The HRCT was done this morning under general anesthesia, which meant she had to be intubated. She did fine with it all until it was time for her to wake up and breathe on her own, and she couldn't seem to get her breathing in order. Even though in the end she did fine, it was still very scary for a mom to see. Pic below is when she was finally coming around a little.


She has a follow-up appointment on the 8th of November with her pulmonologist, so hopefully we'll get results then!

Called the doctor, and they have decided to put Symbicort down as one of Emily's "allergies" as she has tried it twice with the same response both times. Possibly not a true allergy, but she is definitely having some sort of a negative effect from it. So now we are back to trying to figure out if there is anything that can be done for the breathlessness (which seems to be getting worse the last month or so), other than what we are already doing. Next thing we are going to try is restart the Advair and also the Singulair that was stopped in the spring with Emily's liver issues. Honestly I don't see the Singulair helping much (never seemed to before), but hey, it's worth a shot. Only other thing I can think of that ever really helped at all was the Zithromax, but which also had to be stopped with the liver stuff. I don't expect Emily's breathing to ever be perfect, but I'd like to see her back to the point she was last winter and spring. If the Singulair doesn't help, I'll ask about Zithromax again, but I know they don't really want her on any macrolide antibiotics if they can help it. If there is any real risk to her liver, it isn't worth it. HRCT is next week, but insurance is being difficult so we are going to have to wait on the sleep study. :-(

As for Braylon, he was a very sick little boy last night when I got home from work. Weak, sleepy, wheezy, snap crackly popping rice crispies in his lungs, just pitiful. Took him to the doctor and it seems he has a bit of pneumonia. He is now on neb treatments and antibiotics and is already much perkier, although still quite wheezy. Poor little guy! Hate it when my babies are sick!

Other kids are doing well. We had parent-teacher conferences Monday, and Ashton came out with straight A's, and Ryan (who is still graded by number system) has all 4's and one 3 (which is basically all A's except one B). The 3 was because of participation points in Reading class, because Ryan is so quiet in class (seriously??), he rarely takes part in their discussions. Both boys have been behaving themselves in school, and their teachers describe them as "a doll" (Ashton) and "just perfect" (Ryan). Pretty amazing really! And we won't even get into test scores. AShton's math scores were so good, Denny and I are both speechless over that one! Proud of all my kiddos, but so proud of my boys for all their hard work. Now if someone could just bottle some of that good behavior for home!

I wish there was a way for me to stay home with the kiddos. They need consistency, and they need routine. They need me here for them when they are sick and to help them with their homework. There is just so much they do need from me really, and I hate that I have to entrust others with those things. And it really SUCKS that when I get home after putting in yet another 12 hour day with sick dying people who can't breathe, the kids are already in meltdown mode! When I'm home all day, they are on best behavior. It is when I've been working that they get out of hand. I'm tired of coming home to a house that's been trashed day after day. It's a losing battle! If there was some way I could work from home, I would! Or any other way in the world I could juggle their needs and still make money. We have to pay the rent, but I hate feeling like my kids aren't getting everything they deserve, and what they deserve most is a mom! I've got 4 great kids, and their life could be so much easier if I could only be here for them more! Yes, I'm always where there when it counts, but there are times when I have to leave them home when they are so sick, and I just have to pray they will still be there when I get home. Worst feeling ever! Okay, maybe it is just exhaustion talking (6 hours sleep in the last 62, and yes, I know my thoughts aren't flowing, and no, I'm not even sure anyone can follow them, and frankly I'm too tired to care right now), but there really has got to be a better way for families like mine!!!

Thoughts???

It has been less than a week since Emily started the Symbicort again, and as I feared might happen, she is coughing almost non-stop AGAIN. She was only on it about a week last time, and that is what happened then. She is also wheezing pretty bad. But then again, her brother Braylon is also coughing, so they may have just picked up a bug, BUT on the Advair, even with colds and illnesses, her coughing at least has been under control. Not true on the Symbicort. I am going to try to continue it (if we can) until Monday when the doctor office opens, then see what they want to do. I'm hoping all this is just coincidence, maybe just a transition period, and that she'll start improving. She sounds pretty pitiful though. I hate it when the poor baby is sick!

Pictures below were taken at Ryan's football game last week. Emily and Ashton chose to entertain themselves by tossing a football back and forth while Braylon played with dump trucks.








And this is a cute picture of Emily at Ryan's football game.


This is a picture taken at Emily's "birthday dinner" at Ponderosa (only a week and a half late). We asked her if she could go anywhere in the world to eat, where she would like to go, and she chose Ponderosa to eat macaroni, meat, bread, and ice cream. She wasn't lying either. She ate really well!




And then these were taken back at the football field when Emily was getting tired. She was too tired by the time Ashton's game was over that we went on home.




And then last but not least, I realized I have a pic of everyone but Ryan, so I'm putting in this one of him. This is of serious Rhino helping Daddy with a project for school. What a handsome boy!

News from the Louisville Appointment

Kids had a good pulmonology appointment today. We saw the nurse practitioner whom we really like! As for Braylon, I asked about his chest, and she said they see that in a lot of preemies and it is mainly just cosmetic. It is not as severe as Emily's and is not a worry. So that's good news. Otherwise his lungs sound good, and all his orders are staying the same. He did get a new nebulizer mask. And his weight is up 3 pounds! Thank you Pediasure!!!

And then there is Emily. They asked me to fill out the little asthma assessment to see whether her asthma was under control or not. Mainly due to her near constant shortness of breath, she scored that her asthma is not under control. I'm not sure how accurate that is considering that she has other stuff going on in her lungs, not just asthma (and she wheezes very rarely), but the nurse practitioner reccomended we try Symbicort for a few weeks and see if that makes a difference. She was on that back in November and coughed the entire time, so hopefully that was just coincidental, but if she starts coughing again, I'm to call her back right away.

Emily attempted PFT's today, but they were not consistent this time, although the best one was a little better than the one from the summer. That's good news. As for specifics, I did not see any numbers so don't really know, although I do know they aren't terrible. Her lung capacity is pretty good, I know. It's the other numbers that are usually "off."

The nurse practitioner also reccomended we get a formal sleep study done (1/2 off oxygen, then the other 1/2 on it) specifically looking for other problems such as her ventilation and also look for stuff such as restless leg syndrome or anything else that may be causing her problems during sleep. They are going to call and set that up.

Then the pulmonologist added that he really wants another HRCT scan of Emily's chest to see how things are progressing (or hopefully not progressing, but improving), which due to the fact that she has ILD and can't control how fast she breathes (and basically can't hold her breath at will), she will have to be under general anesthesia and intubated. :-( This will also help the doctors get the best images so that we can get the most information from the test. We've been through it many times before, but I always hate when they sedate her! This will be done October 29.

Otherwise, it was a great visit. No wheezing, no coughing, no crackles this time. The only other thing is that the doctor came out into the hall before we left and told me that no matter what the tests show, even if everything were to come out completely normal, he strongly advises against weaning Emily off oxygen anytime soon. So for now it stays, maybe just for the time being, maybe forever. Whatever it is, we can deal with it, if we could figure out if there is anything we can do differently for the breathlessness.

That is our only complaint right now, the frequent breathlessness, shortness of breath, tachypnea, whatever you want to call it. That and the tired moody whiney attitude it leaves her with. If we could ever reach a point when we can improve those things, we will be completely happy with where we are. Not that we are unhappy now, because we do know how far we have come and how bad things could be. We've been there, done that, so we will always be thankful for how far we have come, but at the same time, there is still room for improvement.

Wrestling practice tonight, then it's back to work for me tomorrow. *Sigh* Always something!

Interesting Logic

Wrestling practice went fairly well tonight. Better anyway. The boys looked great, and while Emily didn't do any actual wrestling, she did do a lot of her drills and played a few of the games. Much better than sitting in the corner crying!

After practice, she gave me a little chuckle. We were using the public restroom, and from the other stall, she called out, "Mommy, I think I'm going to quit cheerleading and just do wrestling all the time. Do you know why?"

"No Emily, why don't you like cheerleading?"

"You should know this, Mommy. I only love BOYS, not girls. You know that! I LOVE boys, and there are no boys at cheerleading, but there are lots of boys at wrestling. And at cheerleading, all the girls are all cute and pretty and stuff, but at wrestling, I'm already the prettiest one."

Didn't know what to say to that! Little chicky cracks me up!

As for if she is really quitting her cheerleading team or just all talk, we'll see. She is supposed to have practice tomorrow, and we're going to be there anyway for the boys' football practices, so we'll see....

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.