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.