Friday, July 23, 2010

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!















Friday, July 9, 2010

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!

Friday, July 2, 2010

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.