Thank you, thank you, thank you all the powers that be -- Jamie's heart is normal and looks perfect. It was a very long weekend of waiting, a sleepless night last night, and an interminable wait for Dr. Johnson to come in after the echo ... but it's all good! She even got a lovely picture of her heart to take to school for show-and-share and was only mildly disappointed that it wasn't "heart shaped" a la Valentine's Day.
Annie's heart, as expected, did not show any improvement but it did not show any progression either. That is the small victory for the day today. And she was 10 lbs. 13.6 oz. on their scale -- up about 21 ounces in 14 days. Dr. Johnson said her weight gain is "spectacular." All the blood work from last week (taken here in NH) to check her electrolytes and some other things came back normal, too.
Last night we noticed Annie's breathing looked off. She seemed to be working more than usual to get a breath. Dr. Johnson noticed it late in our appointment today as I was holding Annie in my lap just wearing her diaper. He said it indicated some fluid in her lungs, so we are increasing her dose of Lasix to see if that will help. It's all a balancing act of the right meds at the right levels to give Annie the best chance to rest her heart.
I will be trying to connect with Dr. Smoot's office today to touch base and see where we are for scheduling the cath. For now, we will be going back to see Dr. Johnson every two weeks as well, with echos each time we go. (We'll probably skip seeing him in two weeks since we'll more than likely be doing the cath in Boston around that time.)
I have jumped in on the list serve for the Children's Cardiomyopathy Foundation (www.childrenscardiomyopathy.org) and introduced myself and Annie to the group. I have asked for some input and have received several e-mails back so far. It seems like a very supportive group! There are some great stories of kids with DCM doing well (seeing improvement in the heart function) after they started taking beta blockers. So, I am going to ask Dr. Smoot about that today, too. When can we expect to add in a beta blocker?!? I spoke to Dr. Johnson about it today and he said that the idea is not to introduce too many meds at once, which makes sense. We'll continue to see how she's doing on the Lasix, Digoxin and Captopril for now. Hopefully, though, she's doing well on these meds and we'll be able to move forward with a beta blocker soon.
Thank you everyone for your positive thoughts and prayers for both our girls today. My worry for Annie is not lessened, but there is a huge measure of relief to know that Jamie's heart is perfect! Have a great week!
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6 comments:
Hi, I emailed earlier about Sydnee. She was diagnosed with DCM at 13 mo. and was placed on Digoxin, Captopril, Lasix, Spirolactone, asprin right away. Then after a very short time the Coreg/Carvedilol I was telling you about followed.
Thank God for the good report about Jamie's heat! I know you will sleep better tonight.
Annie is really gaining weight now and that too must help you take a breath of relief. We will continue to pray. There is still a long way to go.
Hi Ross-
I'm so, SO glad to hear that everything looked great with Jamie, and that Annie seems to be doing well right now. I read your post about getting a negative comment, and I'm sorry that you had that happen. Sometimes it seems like no matter how difficult your life seems, someone has to make it seem like things are worse for them. You and Scott are doing a great job, and don't think for a minute that you're being too selfish about anything. It's a tough road you're traveling on, but just remember you've got friends who love you and care about you. We're here for you if you need anything. Take care- Amy, Jake, N&C.
Oh that is good news. W really believed Jamie was all right but that nagging worry still reared its ugly head. I've passed on the info to Lori and Pete and know Beth will check the blog and tell Mark. Love you guys and hope you'll get some sleep tonight. Mom and Dad
Hi Ross and family,
I just wanted to let you know that I have been reading your blog about Annie and your family almost daily. You all have been in my prayers and I said a silent "hallelujah!" after hearing that Jamie's echo was normal yesterday. Just wanted you to know that your family is in my prayers and I send Annie healing energy. In fact, I dedicated my yoga practice, during a class, to her a couple of weeks ago. I'm so sorry that you have had such a roller coaster ride, both medically and family-wise, but the positive energy coming your way will certainly encompass you. I will continue to read the blog...love seeing the photos. take care, Daria
Dear Ross and Scott,
I echo the halleluyah for the WONDERFUL report back on Jamie's heart. So relieved for all of you to read that.
Continuing to keep you in my thoughts and prayers,
Anu
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