I cleaned my house before we left for California. It was spotless! Today, it looks like a tornado came through. How does this happen?
We went to cardiology at 7:30 am this morning. Dr. Stock hadn't heard from Stanford yet and had no idea of our plan. We are going to get Owen up to 20ccs of Captopril a day... that's ALOT of Captopril (heart function medication). I'm increasing his dose today, then again next week. Side effect... dangerously low blood pressure. I am to keep an eye on him, give him more fluids, back off his meds as I see fit. I really should be a Dr. by now.
We should hear back from Stanford regarding his antibodies somtime this week. Then we'll start that "protocol".
I know, it's all boring stuff. I welcome boring with open arms.
Now, to answer a couple questions.
What brand of tape do I use on Owen's cheeks?
I use Medipore tape. Ugly, white, sticky... but it is the only tape that doesn't irritate his cheeks, dampens in the shower so I peel it off easy and change it, and it sticks well so the tubes don't slide around.
Why isn't Owen immunized?
I do believe in immunizing my kids. Kamryn is up to date on all her shots and Owen would be as well, if he were perfectly healthy. It has been agreed upon to wait on Owen's immunizations for now. He has bigger issues right now. I also agree with parents that choose not to immunize their kids. It's something that should be researched and parents should go with their gut on this one.
What medications is Owen taking?
HA... do you really want to know?
Captopril (heart function med) 15ml's a day
Sildenafil (viagra for hypertension) 6ml's a day
Lasix (diuretic) 3ml's a day
Aldactone (heart function med) 3ml's a day
Digoxin (heart function med) 3ml's a day
Asprin (blood thinner) 1/2 tab a day
These are all set to go up steadily in hopes to put off transplant a bit longer. Have I said that I am thankful for modern medicine???
That's all I have for now. My house needs some TLC. I'm working on a little something for later.
Tuesday, May 19, 2009
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13 comments:
Please give Owen hugs from all of his blogger families! He is such a cutie and you really do inspire me! Thanks for keeping us updated. Have a great day!
Many Blessings,
Amanda
Gosh I remember those days. I would pull all the meds for the week on Sunday and sort them into baggies so all we had to do was pull a baggie and they were all ready. Our house looked like a pharmacy! I am sure yours does too!
As a side bar... Ky missed her flu shot this year because her intestines were busy shutting down during flu shot time and her ped nearly flipped out on me... I was like... uhhhh... do you not remember we were trying to keep her intestines working at the time? Bigger fish to fry sister... bigger fish. Ky was life over limb for so long I don't really remember what the "normal" schedule of stuff was... other than her synages NONE of her vaccines were on time... don't feel bad!
I had to laugh about the viagra for the hypertension! You sure put a lighter note on this medical mumbo jumbo! Praying for Mr. Owen and hoping that he has a GREAT day!
~Elyse
15 cc's of Captopril?! I bet you are lovin' that NG tube when you pull that syringe!
I'm so glad you guys made it home safe and sound, even a messy home is better than being away from home! Thank you so much for keeping us updated, so many people are thinking of and praying for the Simmons Family! Lots of love to you!
What would Owen's symptoms be if his bp did dip too low?
Jesse
I just stumbled on your blog. My youngest was born the same day as Owen, and we're in Phx too! crazyness! :)
andrea, this is great news. i truly hope the new med works along with the increase in the others. i just love his smile! thx for posting the pics. overall it looks like the trip was awesome! til next update. i hope you got your house clean and some good ol' rest. xoxo to little dude. continued prayers for lil man.
You are going up to 20 cc's of Captopril???? That is crazy! Have they mentioned switching it over to Enalapril? I was told it is basically the same, only stronger so you can get away with a lower dose. That's what Josh is on right now because when they expected me to give him 6cc's of Captopril at a time I told them there was no way that was happening. Anyway...glad you are home & get to be there for a while!
Andrea, thanks for the update. I enjoying checking each day to see how Owen and your family are. I look forward to see how Owen upped dose of meds do for him. I will keep checking in. Our prayers are with you.
Many hugs to Owen..You have a great blog...I enjoyed my visit. Stop by and visit me when you have some time and read about our latest Disney adventures....Grandparent trips are the BEST...and every comment enters you for the May giveaway.
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It only takes a few minutes after a trip for the house to be messy again but hey at least you are home and Owen is there with you...after everything else that is all that matters! :) Praying still!
i just wanted to say a quick hi. i stumbled upon your blog through another one, and i realized i had seen you guys when you were at the ronald mcdonald house! i definitely remember thinking how adorable your son, owen, is. =)
anyway, my daughter has been in the cvicu at lpch now for almost seven months, and hopefully, we are almost on our way home soon.
but, i will now be adding owen and your family to my prayers.
sincerely,
victoria
www.momentswithmoriah.blogspot.com
I have enjoyed reading your blog.
I am new to the blog world, but have seen the miracle of the blogging community and prayer in the last two days. Hope you will stop by my blog and pray for little Maggie.
Glad you made it home alright and that you didn't have to stay. I understand the feeling of having a clean home, then suddenly a disaster strikes! I continually pray for your family!
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