Dr. Stock had a chance to review all the information from our cardiologist, Dr. Rosenthal, at Stanford (transplant hospital). He too is a bit overwhelmed with the idea of giving Owen 20cc's of Captopril, three times a day. Dr. Stock is cautiously optimistic, along side myself, that we will get Owen to his maximum dose of medications saftely. We both trust that Dr. Rosenthal is the expert in heart failure and that is exactly what Owen needs right now. We all know that the need for Owen to get a new heart is just around the corner. We are all praying to get at least another year out of the heart he has. Only time will tell what Owen's plan is.... meanwhile.... we celebrate in how well he's doing today!!
His sats were at 83 today on 3/4 liter of oxygen. When I try to wean him off he drops down into the 60's.
So we will keep these lovely green tanks as a permanent fixture indefinetly. They add a charm to our dining room and a little color against our white walls.
This feeding pump isn't going anywhere as it is the only way Mr. Owen is even close to 23.5 lbs. Someday he'll eat... someday.
This is the medicine counter in our kitchen. We have an endless supply of syringes and six compounded medicines. Not pictured... our 3 pill cutters and crushers for his daily dose of asprin... I can't figure out why they don't make that in a liquid form?
It may seem like a lot of "stuff" for our home, but without it Owen wouldn't be alive. We are grateful to have all of this equipment and can't imagine a life without it. Actually, I could imagine my life without the 50 ft oxygen cord that tangles itself up on everything in it's path. We'll leave that for another post.
20 comments:
Aww~what a good little guy and so BRAVE! I'm so happy to hear everything went well and hope the medicine issue is resolved soon. He's looking awesome! :)
Always praying for and thinking about your precious boy and family. (((HUGS))) G'Ma~rella
So glad his appointment went well! I thought of you lots when I was tripping over/untangling her oxygen cord this past week...luckily, she's close to her "norm" again so we ditched the oxygen. Plus she was hating it since she hadn't worn a cannula since she was 4 months old.
You can have asprin compounded!!! We did this for Maddie for her first 4 months or so...just need a script and letter from your doc stating the necessity for compounding it and find a pharmacy that can do it, at least that's how I went about it. Our insurance didn't cover it though so it was spendier. You may want to check into it since I'm sure you're SICK of crushing it! Maddie eats her 1/2now, thinks it's candy :)
Anyway, glad your husband is doing better and so happy your little man checked out fine today.
He is such a brave and strong little boy-def. an inspiration to me! If a baby can get through these hard times, I can most def. get through my own struggles. God is so good!!! He looks amazing!!
Always praying-Love and Hugs-
Tiff
Glad his appointment went well. Still praying for your family.
Absolutely...it is worth every bit of it! What a miracle you have in Owen and how incredibly blessed you are to have him! I love his little shirt and I'm amazed at how he takes everything in such stride.
By the way...I think the oxygen tanks add a nice glow to your house :)
Continuing to pray for your family!
Your appointment sounded like it has gone well. We are praying for Owen and your family.
Can I ask, why they haven't given you an oxygen concentrator and something to moisten the oxygen as it will dry out his little nose. Some places say they cant do it until he is at 1 liter but that is not the case just FYI. It makes life so much easier having the consentrator as you don't need all the tanks and so many home deliveries.
Praying
Terri
Mommy to angel Corbin HLHS
Glad to hear that Owen is hanging in there. He is so smiley and a happy kid! I wish him only the best! I have enjoyed your summer updates! We hit the craft store too for my 3rd, almost 4th grader! She is into beading...making bracelets and necklaces. Kamryn may enjoy that as well. It's a nice quiet activity that my daughter loves! Hope you keep enjoying your long, fun, lazy days of summer!
Jill
What a sweetheart and he is so brave. What a true inspiration. He is just adorable. I am glad his appointment went well. He is a true blessing. I will pray for him everyday. Enjoy just having him home. Big hugs for Owen!!
Great to hear such a wonderful report. Thank goodness for modern medication and medical help!!! I continue to pray for your and your family every day!!!
So happy that Owen is doing well, what a little man! I love his Curious George feet, it's like he has 4 hands :) So brilliant!
Kamryn is cute, I love that she watches The Bachelorette with you, Grace watched it with me on Monday too, and I was answering the same questions :) I love having a daughter!
Andrea, I think all of that "stuff" is fabulous as well since it is keeping Owen with us until he gets his perfect heart. Years from now it will all be just a memory as he won't need anything soon. I pray for you all every day that his heart will come so soon. You are still such an inspiration to me for how to make the very best of the moment. Enjoy the not so hot, hot summer days right now. I can't even get in a pool as I'm such a wimp with the cold water!
Love, Keisa
What a cute, cute, fun family with a positive outlook on life! Owen is THE cutest little guy, with smiles abounding...how can he possibly be sick?! He glows with love of life. And Kamryn is beautiful! Soooo patient with her little brother! Glad she has a brand new baby cousin to share all her lovin with--those photos are so cute! (That one of Owen when you were holding the baby made me laugh out loud!) Glad your hubbie is healing and you can settle in for a loooong summer stretch.
Wow how that kangaroo pump and meds are way too familiar. No one can truly understand the importance of all those meds until you have a child whose life depends on them. I will continue to keep sweet Owen in my prayers and for you to have a peace about this whole waiting for a heart. The boat we were in is totally different than the boat your family is in, but it all boils down to wanting the absolute best for your baby. I pray hard that he will get a healthy new heart soon but until that time, for Owen's heart to keep on pumping!
Enjoy each day and cast all your worried on God! He can handle them!!!
Just wanted to say we are praying. Glad to hear the appointment with the cardiologist went well. We will pray that the captopril dosage level is achieved easily without incident. God bless!
It's hard for me to imagine what your life is like every day, but I know that everything you do is for your kiddos. I love the picture of Owen next to the air tanks.
Sigh. I love you guys. Your house reminds me so much of my house. :D
That toothy grin makes my day everytime I come here. Thanks for your comment and for being honest.
I love honesty. It's such a good trait to have.
You are in our thoughts and prayers more than you know.
Oh and another thing I have never figured out, if they can land a man on the moon, how come they can't make an IV form of Tylenol?
Things that make ya go hmmm... eh?
Wow... so many memories. We were lucky enough that even as bad as Ky's heart was she was still ALWAYS at 90% o2 or better.
Owen certainly is adorable! Its amazing to think that even 10 years ago our kiddos would have had little to no chance. I look around at all the wonderful medical advances and am SO thankful for my daughter and for so many other kiddos whose lives have been saved!
As a side note... hooray for Owen being at a rate of 120/hr! Holy crap I would cry if I could ever get Ky that high. Her GI system sucks. Anything over 60/hr makes her puke.
Hugs and prayers!
Amber
I'm a physician who randomly stumbled on your blog. To answer your question about liquid aspirin, the issue is Reye's Syndrome -- where kids developed potentially fatal brain and liver problems after taking aspirin. There are very very few real indications for aspirin in children, and they are mainly for cardiovascular diseases (like Kawasaki's). So, why create a form of the drug that would be potentially fatal (adults can swallow the pills) if the market is so ridiculously small for it? I'm sure you can get it compounded though. Good luck.
Modern medicine is a wonderful thing.
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