Heart Day...New Developments

One year ago, Aubrey had her heart surgery. I have thought of it often lately, with our recent stay and the ongoing lung issues (and today, was no different). I had grand plans for all things heart and celebrations, but Aubrey had other plans...

This morning, she was a little stuffy and working to breath, so I fed her and then did some saline drops and went on with her first nebulizer and thought that would help. It did a little, but not much so I gave her a bath and then got her dressed in her heart sweater, to mark the day. Still not better, so I followed the "short of breath" regiment on her plan. One whole vile of xopenex, if no change, .5 xopenex and 1 whole pulmicort, if still no change repeat last doses and call the office. So we did all that (4 treatments in all this morning) and then called the office when there was no change. She hasn't been using oxygen during the day at all, and I had her on almost 1 liter.

They don't see patients on Wednesdays but the nurse was there and she said that we should go to an urgent care and have them take a listen and do an x-ray and report back. I really didn't want to start over with some strange new doctor, so talked her into letting us go to the pediatricians, whose office happens to be at a hospital, where they could do the x-ray. At least he had a baseline for her since he had just seen her last week for her well visit.

So off we went, to the doctor. They are so wonderful over there and sent us right down to radiology, and kept Ella entertained in the office. It made for a little bit easier time. It is the cold and flu season, so they were busy and it took them awhile to get to us, but they did read the films fast and he had the results just as we got back up to his office.

It appears that she has some haziness in her chest again. I didn't get to see them this time to verify whether it was better or worse, but it is definitely still there. The radiologist wrote it as possible pneumonia, but they don't think it is. Looks like maybe just more "goop"! The other possibility was that the antibiotics that she is on are not strong enough, so they gave her a antibiotic boost shot and then were going to talk with the pulminologist Dr. Rembecki. Stay the course on everything and wait to hear.

I didn't even get in the door at home and they were calling! He wants to see her in the morning. Keep doing everything, but if she has fever, shortness of breath (that isn't fixable) or needs more than 1 liter of oxygen, we are to go to the ER.

So no answers today, but very reminiscent of her post surgery. Every time we thought that she was almost off oxygen, she would have a setback. It was such a roller coaster, and it feels like we are back on it, but at least we are home this time. Will let you know what we hear from him tomorrow...

Does anyone out there have any similar experience with the cold that never goes away or excessive need for oxygen? I'm all ears and eager to have some suggestions or help.

We continue to be humbly grateful for all of your prayers and support. She is a bit of a mystery to us, but the Lord knows her well and has a special plan. We turn to him and trust in him and await the good that he promises "In all things, God works for the good of those who love him"

Hymn 415

Be still, my soul; the Lord is on your side;

Bear patiently the cross of grief or pain;

Leave to your God to order and provide;

In ev'ry change he faithful will remain.

Be still, my soul; your best, your heav'nly friend

Through thorny ways leads to a joyful end.