Catching up

It must have been week before last that I first noticed little changes in Emily. She wanted oxygen on more, was a little more short of breath than usual, and just not quite herself. Then on Monday of last week, I noticed little wheezes, which were treated with Albuterol and went away. Monday night, she had a pretty fair bit of trouble while she was sleeping, and I had to turn her oxygen up to keep her oxygen levels in the mid 90's. The extra oxygen helped a lot, and she settled right down. Tuesday, Emily returned to school, and as the bus driver dropped her off that afternoon, she told mom that Emily had been breathing very hard at school and had to use her inhaler. Mom called to tell me this but said she seemed okay to her. When I got home Tuesday night, Emily was coughing her head off and wasn't feeling well at all. As the evening went on, Emily's sats dipped lower and lower, and by bedtime, her sats were 90 on her normal amount of oxygen, and she was not moving much air at all on the left. When she did get air through, it would sound like a very long low-pitched moan, but most breaths, there was no sound at all, not even air moving. And her work of breathing was awful. Very scary!

I've seen this before, and it almost always affects that left side moreso than the right. Not sure why the left. It also responds very well to steroids. I immediately turned her oxygen up, gave her albuterol, and ran downstairs to get her some steroids. I had to dig through the medicine cabinet and combined the remains of 5 bottles to get a teaspoonful, which is what I gave. Within a short time, she was breathing much easier.

She stayed home from school on Wednesday and went to her pediatrician, where they determined that Emily had likely been exposed to the flu, which had set her off. They put her on prednisone and Tamiflu, and she is much better already. Still coughing a lot, and now suffering from steroid side effects (tearfullness, moodiness, anger, flushed face, hunger, stomach upset, hyperness, elevated pulse, etc.). She is miserable from steroids, but she is doing a lot better. We definitely have a steroid love/hate relationship. Love what they do for her, but hate what they do to her.

Yesterday was Braylon's third birthday, and also Denny and my 12th wedding anniversary. We celebrated last night with a little party for the Bray-man. Mom and my sister Michelle came over, and we all had pizza and cake. Braylon got a big wheel and a few little trucks, and he was soooo happy. He played with his toys while the rest of us played Wii. Had a great time!

Then, of course, Braylon didn't wake up on his own this morning. Fearing he might be ill, I woke him up at noon, and sure enough, he was wheezing, coughing, had a fever, and then as time went by, ended up throwing up. So I fully medicated him, and he is feeling much better now.

Pulmonology appointments for Emily and Braylon are scheduled for a week from tomorrow. Fingers crossed that everyone gets back to normal soon. We're so ready for warmer weather!!!

Happy Birthday Ryan!

Ryan turned 8 this week (the 24th). Hard to believe my little baby Rhino is getting so big! Happy Birthday Ryan! Love you lots!

It just so happened that Ryan was also "Star of the Week" at school this past week. Basically that meant this week has been all about Ryan. As I know it is hard on him being "the healthy one" and having to sacrifice so much attention to his brothers and sister, this was a really good thing for Ryan. I went to the school and ate lunch with him on Monday, he got to take in pictures of himself to show the class, he got to take in a collection of something special to him on Tuesday (he took his wrestling medals, ALL OF THEM!!!, LOL), and finally I got to write a letter to the class explaining what is so wonderful about the Rhino. I must have done alright with my letter because he came home beaming. Great to see!

In the above picture, Braylon waits to eat some birthday cake.

Above, Ryan and Emily give hugs to Mamaw's dog Dante.

And in this picture, Ashton and Ryan were having a little fun in the snow.

Otherwise, the past few weeks have been fairly uneventful. Well, in the comparison to what we are used to anyway. I've always said that if it weren't for bad luck, we wouldn't have any. My truck broke down a few weeks ago, and it still isn't up and running. Rear trailing arms (upper and lower) broke right in two on both sides, so basically the Expedition is ready to fall right apart. Felt like all the wheels were turning as I parked it, and steering was impossible. Thankfully, this happened as I was pulling out of my mom's driveway, and not on the way to the wrestling meet 2.5 hours from home that we were getting ready to leave for. Just so happens that Denny is buying me his mom's old car, and we thought it would be cheaper to put it in the shop to get the brakes done, then I'd have wheels. No such luck. It's in the shop alright, but the job turned bigger than ever, so it's going to be at least another week before we can afford to get it out. Meanwhile Denny was driving us up the hill to mom's house to have a good look at the expedition when his explorer blew up. So yup, just like that, we are down all 3 cars, and I've had to resort to bumming rides to work. Story of my life, but this too shall pass.

There has been a nasty bug going around at work, and I managed to get it a few weeks back and spent 4 days in bed with high fevers. I'm all better now except a little cough and head congestion, but now (of course) Braylon and Emily seem to be coming down with something. They've both been wheezy, pale, and moody for a few days, and Emily has been using her oxygen more often than normal, but otherwise, they seem okay. Emily did have one day of throwing up, which unfortunately began on the bus to school and gave her teacher quite a fright when Emily "turned funny colors and started gasping like she couldn't get her breath." She's over the vomiting now though, just the chest cold stuff. Fingers crossed that this is an easy bug for them to get over.

Emily had a parent teacher conference at house Friday morning, and that went well. Emily continues to progress with her pre-reading skills, and she is right on the verge of putting it all together. The teacher feels she will be reading before she starts Kindergarten in the fall, so that will be good. :)

Oxygen Helps

They say a picture is worth a thousand words. If that's the case, have a look at these:

This is Emily sleeping off her oxygen. We were watching TV, and she fell asleep on the couch last night.

Note how red her face is and the pale circle around her mouth and nose. She was really working hard to breathe in this picture, and her heart and respiratory rates were all over the place. Neck vein was also visibly pounding so hard, you could see it from across the room.

Now look at Emily sleeping about a half hour later with her oxygen on. Very calm, relaxed, heart and respiratory rates down, and just look at her color! She was sleeping like a baby!


Not sure what it is about that little bit of oxygen that helps her so much, but we are so thankful that we have it available to help her rest easier. We know the difference it has made in her life.

We are having problems with nosebleeds again, and from the amount of blood she's lost lately (soaked most of a towel Friday night), I'm guessing she might be anemic again. We've tried EVERYTHING for the nosebleeds, and they seem to improve for a while, then bam. Of course I know the ultimate answer to that is to wean the oxygen to minimize nose trauma, but with watching her work so hard to breathe every time we try, how can we do that?

As always, we're open to suggestions.

Merry Christmas to All!!!

We had a great Christmas with family, and the kids had a blast with all their new toys. I worked 5AM-5:30PM Christmas Eve, so by the time I got off, I was wiped out. I knew it was going to be a battle to get them all in bed so Santa could come, then be back up at the crack of dawn to get gifts open and get to my mom's by lunch, so we opted to have Santa come before I went to pick up the kids Christmas Eve. They weren't expecting that at all, so it worked out really well.

I came home and dealt with Santa right after work, then went and picked them up about 7. We drove out to Charlestown, IN to see their Christmas display (yes, in the snow).







We then came home to discover that Santa had gotten there early. Wow, were they ever surprised!














We opened gifts Christmas Eve, then were able to sleep a little longer Christmas morning before going and starting it all again.

We have a lot to be thankful for this Christmas. The biggest thing being that we've had no hospitalizations (knock on wood) this entire year for the first time since Emily was born in 2005. That is huge for us!

Hope everyone had a wonderful Christmas, and we wish you the happiest of New Years! I'll leave you with Emily's ear splitting performance. She says it all!

When You're a Celebrity

Emily had her school Christmas party last week. All the Head Starts in the area met at the Moose for a lunch with Santa, and they performed their Christmas songs all together there. It was a really good turnout, and the place was packed! Thankfully, as I was coming from work so showed up very last minute, my mom showed up early to help set things up, and in the process, she landed us a table right in the front row. Couldn't have worked out any better for us!

Emily was soooo excited about the whole thing! Every little bit, she'd think it was time to go sing, and she'd make a run for the stage (and I do mean RUN)! No stage fright there! LOL! The singing itself was very short and sweet, and then it was time for lunch and then the long awaited meeting with Santa.

Does Emily believe in Santa Claus? Oh yeah! She could hardly contain her excitement in line and could not wait to get on his lap for her picture. Of course, it was supposed to be a quick picture for the school, but Emily was sure to place her "order" as well. :-) She quickly smiled one goofy grin for the camera, then turned around and started in on him. It was all just too cute, and the newspaper was there and started taking pics.

After they managed to get Emily off Santa's lap, the newspaper man chased her down and asked her what she had been discussing with Santa, her name, and her age. I kind of wondered if she'd make the paper, but of course out of the hundreds of kids there, what were the odds they'd go with that picture? Well, of course, this is Emily we are talking about, so I should have known! Emily made the big picture right on the front page! She was soooo excited, and everyone has been teasing her about being a "celebrity." I hope this link works.

http://madisoncourier.com/main.asp?SectionID=178&SubSectionID=961&ArticleID=60017&TM=38140.95

In other news, we seem to have a tummy bug floating around the house and a nasty cold as well. I've been sick for over 3 weeks now with sore throat and sinus stuff and am hoping I'll get over this soon. Ashton had a really bad asthma attack last week, and I almost had to call 911 for him at 4:30 AM the other day. His airways got so tight, he couldn't even get out the word "help," but he came out of it with 6 puffs of his albuterol inhaler, a neb, and a dose of steroids. That's the good thing about Ashton, he comes out of it quickly. Emily and Braylon have the cold as well, and we've been doing Albuterol nebs on them all week, and Emily has needed extra oxygen. They are still wheezing, but they are holding their own. Nothing a doctor would do any different right now anyway unless we wanted to do steroids, and I don't think we are to that point yet.

Christmas is approaching quickly, and I think we are getting a tree today. We've never been able to do a real tree since the kids have been born, but we are feeling brave this year. Denny was up all night doing homework and is sleeping now, but when he wakes up, he promised to take the boys to cut down a tree. This should be interesting. :-)

Kids are getting ready now, even vaccuuming for me in anticipation of making everything Christmas perfect! They are too sweet!

November 21, 2010

I came to the realization today that Emily measures time by number of days with Mommy, meaning my days off work. Wow, that really makes me feel like a heel! I hate leaving the kids anyway, but to hear her tell Ryan, "You need to get ready for school. This is the last day with Mommy, and that means you have school." Well, it's actually not my last day before going back to work, and the boys obviously don't have school on a Sunday. I have one more day off this week, but she was certain that she had counted right. Her whole plans for the day had revolved around this being "Mommy's last day" which to her meant my day with just her and Braylon.

Instead, Emily, Ryan, and I went downstairs before the others got up to make cinnamon rolls. Ryan and Emily took Daddy breakfast in bed, and the other boys got to enjoy theirs when they got up. Very sweet morning with my middle two kids. And very yummy cinnamon rolls too. Just what my diet was missing, right??? LOL.

We've all been passing a nasty bug around the last couple weeks. First was Ryan sick for 2 days, then Ashton for 2 days, then Ryan for 2 more. Then we had a couple good days and then Denny got a fever and sore throat for 2 days. Several days later, Braylon came down with a fever but no other symptom. He ran 103+ for 2 days, then got okay. I wasnt' so lucky. Wednesday at work, my throat started hurting. By Thursday night, I was running a fever and was barely strong enough to drive myself home. By Friday morning, I had nasty blisters in my throat, could barely breathe, and could do little more than sleep. Fast forward to Sunday....I'm finally awake! Throat still killing me, but I finally feel like I'm joining the real world.

Only one who hasn't gotten it yet is Emily. Well of course she went to bed early last night claiming she wasn't feeling well and then woke up this morning coughing her little head off. I hope this isn't a sign of what's to come! Keeping my fingers crossed! She can't afford another lung infection.

The pictures below are of Braylon and Ryan taken last night after Emily was in bed. Braylon won these little tops from the school fair a few days ago, and he stood on a kitchen chair for hours last night trying to spin them. He likes them so much, he even slept with them! So cute! And then the other picture is of Ryan and our cat Miss Oreo. Ryan and his cat are nearly inseparable, but this might just be taking devotion to a whole new level!

Results

Emily had an appointment in Louisville yesterday to get her recent test results. All in all, a really good appointment!

HRCT scan showed the usual chronic changes but overall some improvement from the last one done a year ago. Sleep study didn't show much of anything which is also good...no obstruction, no CO2 retention, pretty good oxygen levels. And last but not least, Emily's PFT's were also up! So it really looks like things are continuing to improve, albeit very slowly. It's been 5 years now since we brought home our little tachypneic bundle of oxygen tubes and cords, and at that time, we had hoped she might be weaned off oxygen within 6 months. And here we are, 5 years later....

Her doctor stressed that he does not yet feel Emily is ready to wean the nighttime oxygen, even though everything else is improving. As we're the ones who live with Emily, I can honestly say this is a good thing as well. While I'd love if we could get rid of it once and for all, I don't want her weaned until she is absolutely ready. Emily still has the shortness of breath, and when she's been off oxygen too long, she still gets very breathless and tearful. And if anyone has doubts, I challenge you to spend 72 hours with Emily without oxygen! She does still need it despite what tests might show, and she will let you know in a very loud, ear-splitting kind of way! And combined with her history and the fact that she is actually improving now, it just doesn't make sense to rock the boat. We are continuing things as is for now. Advair inhaler 2puffs twice daily, Singulair 5 mg at bedtime, and 0.5 liters oxygen at bedtime or when she otherwise needs it. Compared to the huge list of very harsh drugs she was on as a younger child, we've come so far!!!

On a very bright note, I want to offer my hugest thanks to Emily's pulmonologist for actually hearing what we say! That is so huge, especially as we've had issues in the past with other doctors not hearing our concerns and refusing to see Emily as Emily, and instead only seeing the figures and numbers instead. Yesterday, Emily's doctor had another doctor following him, and that doctor did not relate to us very well. He kept asking the same questions over and over like he was reading them from a script, and he just couldn't fathom why Emily was still on oxygen and why we say she gets so short of breath when she looked so normal sitting there on the exam table. When Emily's doctor came in, he attempted to put into words Emily off oxygen versus Emily on oxygen. God love that man! He's never had to listen to her wailing at the top of her lungs for oxygen, and he's never seen her first hand puking in her bed and crying herself to sleep because her belly hurts so bad from essentially no stomach motility. He's never seen her lying on the ground crying at cheerleading because it is too hard to breathe and cheer at the same time when it is hot outside! He's never seen her try so hard to do things other kids do with ease, just to have some sort of normalcy. He has never lived with the real life Emily, but still he can look past the numbers and the figures and the test results and see Emily for who she is, a kid who uses oxygen to help her make the most of her life. I think he really GETS IT, and I REALLY appreciate that!