Captopril 4ml - 3xday
Sildenafil 1.2ml - 3x day
Aldactone 1ml - 2x day
Lasix 1ml - 2x day
Digoxin 1ml - 2x day
Asprin - 1x day
That's all of them!
Owen, Dr. Stock and I had a good chat as well. Owen promises to stay healthy and happy at home while taking his oral meds. Dr. Stock will followup with him on Wednesday of this week and very frequently thereafter, and of course, anytime! I am going to relax a little, stop worrying so much about Owen's outcome and just let things develop as they are meant to. Easier said than done.
As far as a hospital choice, I will wait for Seattle and Stanford to call us. I will continue on with plans to visit those hospital and then we will make a choice and stick with it. We're all in consensus to stop the antibody treatments for now until Owen is to a point where he NEEDS to be admitted. The chances of him getting a heart at home are slim to none, so there is really no reason to continue to treat his antibodies until necessary. Until then, we will wait at home and enjoy life!
Since Owen is feeling better, I figured we should do a little physical therapy play today...
This is what tummy time is like around here! :) Looks like a good time doesn't it? Owen has never been able to push up on his arms at all. I always blamed it on his big ol' adorable head and his tiny little body. Any guesses on when he'll start crawling?
Here is Owen working on bearing weight in those legs. The part you can't see is him hollering at me. I really don't torture him... I only have him work on this for a total of 10 seconds before he starts to scream! Then I stop.
I try to do a little bit each day with him... 4- 15 minute sessions is about all he can tolerate. I know that his motor skills are the least of his worries, but we still need to work on them. Don't let this little guy fool you... here's what he just figured out to do on his own. Can you say butt-scoot?
17 comments:
Owen is making me dizzy in that video!! I think he's a few months off crawling. The quality of his movements is great, it just seems he hasn't put it all together coordination wise (I'm a pediatric OT). Best wishes on your darling boy!!
Gosh that is a ton of meds. Yea for the NG tube right? Kylie is still so tiny her amounts are not too bad, she is on 5 now. I stopped the reglan and zantac, I took your advice and figured its not worth the risks. PT looks like no fun at all. Kylie starts on Thursday. She won't put weight on her legs either. Silly little heart kiddos. Glad he is doing well enough to stay home.
I found your page through Sofi's web page. Her mom is a friend of mine.
Anyway I just wanted to wish your son and your family luck with everything. Owen sure is an adorable little boy!!
Just love the butt scoot and the way he looks at you in the video. Great exercise for him too!
It's so fun to see the little man in action. I have a feeling he will be scooting around the house anytime now, but he may walk first. I was once told worrying helps nothing,only hinders. although I can't seem to stop myself
I will pass that advice on to you ;)
{{{Hug}}}
He is developing those motor skills alright. He looks like he is having fun! I am glad to hear that things are working out better and your mind can be put to ease - at least a little.
Eeee! I *love* the butt scoot!
Cxx
I think I have have seen all that therapy somewhere before:)Teagan hates tummy-time. I hope the oral meds can keep him home until you are at peace with where to take him.
HEART HUGS
I bet when you look at that meds list you say again, "Thank you NG tube!"
Andrea, our family is praying for yours. Praying for God to just fling open the right door, so that you will feel absolute peace about where Owen will get his new heart.
Have a great weekend ... I'm so glad you have a p.c. you trust. We do, too, and truly feel that has been one of the biggest blessings of this journey (although he may now regret giving us his pager number, hee hee).
Jesse
What a cutie! That video is precious!
I stumbled upon your blog tonight and couldn’t leave without posting a comment. I saw that Children’s Hospital in Pittsburgh was on your list. I can give them nothing but praise. I had heart surgery there twenty years ago. While it wasn’t a heart transplant it did save my life. My doctors have always been the ones that head up the transplant teams and I think the world of them. I now live in New York and it breaks my heart that I have to find a new cardiologist. I wish you and your family all the best.
I'm so glad you seem to feel a bit more at ease with everything tonight. The med adjustment may by just what Owen needs for the moment.
He is seriously ADORABLE in that video. Wish I could give him a great big hug. :)
Glad you feel alittle calmer and at east about things! Love the butt scoot....he is the cutest thing I've seen!!! Praying that everything stabilizes alittle and the increase in his meds will help him get comfortable!
So glad he gained so much weight and you can stay home sweet home!! Sorry about all the stresses. You are doing an amazing job and so is Owen. I know the Lord is over all the details. Maybe, just maybe little Owen isn't walking or running quite yet so that his body will use less energy and he will be be nice and heavy (in cardiac terms) for when his heart arrives. I think that we will see in the next life how so many small things we weren't aware of were going on to bless these little ones to the fullest. My therapist always reminded us that Tyler wouldn't go to school crawling and I know that is true for Owen as well. All our love and prayers.
This is Heidi, not Danny...I need to stop making this mistake'
I know in my last comment I said that Owen has got to be the best documented kid ever, but I am saying it again! Seriously, your blog is amazing and Mr. Owen is going to love reading all this someday. Great video!
He is so cute! With him taking lasix does he have to take any potassium replacement? That is usually what heart patients take with lasix, but I don't know if it is the same for infants. Anyways you have a very precious little angel.
Our Owen is *exactly* the same! No weight bearing in his arms, scared to death of the giant bouncy ball, and not even close to crawling. We have some success with the ball if we place him on it in front of a mirror. Still thinking of you and praying for you often!
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