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!

Worries

Never a dull moment around here.

I got a call at work yesterday morning that Emily was screaming out in pain saying her belly hurt. Her Dad wanted to know what to do, so I told him to give her a Prevacid and watch her. Later in the day, I got a call that she had been throwing up green liquid but that it eventually stopped. Poor kid! I felt so bad for her, but by the time I got home last night, she was fine. Great relief.

Then early this morning, she started screaming from her bed again. Being known for her bedtime puking abilities, I immediately assumed I'd find puke, especially after yesterday. I was very pleasantly surprised to find a bloody bed instead (only mom to a kid with DGE would say that!). Poor Emmers had a bloody nose and the sight of blood had scared her half to death. Got the bloody nose cleaned up, and she is fine in that regard. Well, not really. The doctor has told me a few weeks ago that her nose is in very rough shape, and we are doing nasal washes for that. But at least she isn't bleeding. Emily can't stand the sight of blood.

Then there is the breathlessness. How should I tackle that? Truth is, there are no easy answers. We do exercise, we do oxygen, we do inhalers, and nebs when needed. It is sad to think that this might be as good as it gets with her. Huge improvement from her baby days, but still, there is room for improvement! At her request, we tried to wean her oxygen last weekend, and we failed miserably. Her sats stayed pretty good, but her respiratory rate went way up, and she cried for about ten hours straight on Sunday. She's just not ready, and at almost 5 years old, I must admit that I am starting to fear she might never get there.

The belly thing worries me a lot right now too. Her abdomen is still really big in proportion to the rest of her. She is a good eater, so I am sure some of it is just that, but I'm not convinced that is it entirely, especially after all the liver issues in the spring and now the belly puffing back up again and the green puke. Guess I will watch her. Not much else I can do.

It is just so frustrating because I don't really feel like we have a doctor to turn to for reassurance for all this. I feel in my gut that there is more to it than the doctors know but feel powerless to do anything about it. I could take her to the pediatrician, but they would look at her smiling face and say there is nothing wrong with her. She could be breathing 80 or more breaths a minute and puking all over, and she'd still smile at the doctor...that's just Emmers. The only doctor I used to really trust with my daughter's life...I hated him, but I trusted him because he was very smart and knew how to handle Emily (but was an incredibly arrogant pompous ass, her former pulmonologist)...one day all that changed and he stopped listening and took her oxygen away without looking at the whole child and refused to hear what her father and I were telling him...now I don't trust him anymore. It is just unfortunate.

On the bright side, I look at this child and laugh and laugh at her antics and adore her sweet nature. She is happy, smart, funny, active, all the things I feared she would never have a chance to be. For that, I am so thankful.

Below is a pic of my two middle kids, Ryan and Emily, taken on vacation.

Fabulous Trip

These are pics from our trip to Florida for my sister Miranda's wedding. We had a beautiful trip, and Emily actually went 2 whole days in Florida without her normal breathing difficulties which was amazing to see. Of course she did return to normal after a few days, but it was still nice to see Emily get a vacation of sorts from her lung disease. All in all, a fabulous trip! Congratulations Miranda and Jason!

Some Good Results

Bronch results are very good so far. We are still waiting on some results concerning her immune system, but no idea when they'll be back in. But the big news is that there are no nasty bugs growing (some bacteria but nothing that needs treated), and no sign of bleeding this time! Fantastic news! We can now leave those fears behind us and move on toward better things-- like my sister's upcoming wedding and our trip to Florida! So excited! Now if only I could keep Emmers out of the packed suitcases!



Bronch results are very good so far. We are still waiting on some results concerning her immune system, but no idea when they'll be back in. But the big news is that there are no nasty bugs growing (some bacteria but nothing that needs treated), and no sign of bleeding this time! Fantastic news! We can now leave those fears behind us and move on toward better things-- like my sister's upcoming wedding and our trip to Florida! So excited! Now if only I could keep Emmers out of the packed suitcases!

Bronchoscopy

Emily had her bronchoscopy today. We had to starve her all morning for anesthesia, but she was such a trooper. I actually kept her up late last night so she would sleep this morning while I took the boys out for breakfast and dropped them off with my mom. Then I came home and dressed her and took her to the hospital. She was none the wiser about food having ever been offered to anyone else, and she did much better than I had expected.

When we got back in the pre-op area, the doctor came in and talked with us before the procedure. Then they came and doped Emily up on Versed, and I think they expected her to lie down, get drunk, and relax. Not our Emmers! She was singing "Bringing home a baby bumblebee" so loud that everyone could hear her! That's our girl!!! She got drunk for sure, but she did not chill out. She is a very loud, singing at the top of her lungs, happy little drunk! It was very hard to keep her from falling out of her bed because she kept wanting to stand up in it and dance along with her singing. I wish I had a camera!

Then they came and took her for the bronch. The doctor came back a few minutes later to say that things went well and that her airways looked pretty good. There was a little bit of redness in one area and also some visible granulation tissue deeper into her lungs, but it didn't appear to be blocking her airway. She also has a weird variant of fewer than normal number of airways in her right upper lobe, but we were told that the last time and is nothing at all to worry about. Overall, things looked fairly normal. Of course we didn't expect that part of her lungs to really look bad. Her issue is deeper down in her lungs, in her bronchioles and alveoli, and a bronch doesn't go that deep.

They did collect samples for tests which was the main reason for doing the bronch, and results should start trickling in next week. They will be looking for hemosiderin and/or lipid laden macrophages (especially the hemosiderin as she has a history and we really need to be sure her lungs don't have any bleeding, even on a microscopic level), cultures for infections, and also looking at her immune system by checking her t and b cells in fluid from her lungs.

Although things went so well, it did take Emily about 3 times longer than they had anticipated for her to wake up. She was a sleepy little girl, and she woke up a very very drunk little girl. Denny and I had joked that the first words out of her mouth would be asking for food, and sure enough, after lots of grunting and groaning and jaw quivering (which they said was just a really odd looking side effect from anesthesia), she looked at me and said, "Let's go get a Happy Meal from MissDonald's." (She always says miss, never Mc.) Had to laugh at that!

We eventually did escape the hospital and Emily got her happy meal (which, holy cow, she ate every last bite of!!!!), but she is still so drunk. We got home in time for the Regatta parade traffic, and determined not to miss anything, drunk little Miss E is looking out the window watching what she thinks is the parade (which is really just a never ending stream of cars, LOL).

All in all, a long, tiring, but very productive day. Thanks so much for checking in on our girl. I will update again when results start trickling in.