Owen was up all night... sad. I checked his sats... high 60's. It wasn't awful considering he was upset. I changed his gauze because his gtube was bothering him, gave him some Tylenol for pain, some extra water, and a little yogurt with milk to fill his tummy. He woke up tired.
We took Kamryn to her last day of school.
After we came home I was excited and said, "let's play and watch Elmo!"
To which he replied "NO! Bup... Biiiii... Ni-Ni" (translation: No, I want to go upstairs, I want my Binki and I want to go night night).
He's not sleeping yet, but just cuddly. The same way he has been most of the month of May. I keep thinking he will wake up tomorrow and feel great! It hasn't happened yet.
I called Dr Stock to get him in sooner than June 22nd. He said to call anytime and he will get him in. Darn it. He went on vacation today. We set up an appointment for June 9th, and if he doesn't have a good day soon, I will take him to another one of the cardiologists that knows him well.
I call it momma's instinct, but something isn't right. It may just be that he needs an increase in medications. We haven't increased his medications since May 09. Between May 09 and Oct 09 we increased his medications by a lot! He has gained about 5.5 pounds in the last 8 months and so that usually would require an increase in doses. We haven't been able to make that change because his blood pressure has been way too low.
Besides... look at these doses...
Captopril 20mg - 3x day -- treats heart failure -- lowers blood pressure
Sildenafil 5mg -- 3x day -- medication for pulmonary hypertension (which O. doesn't have)
Aldactone 10mg -- 1x day -- used to treat fluid retention in heart failure -- maybe heart function
Carvedilol 5mg -- 2x day -- beta blocker used in heart failure patients and can lower pressures
Digoxin .005mg -- 2x day -- treats heart failure -- slows down the rhythm of the heart
Lasix 10mg -- 2x day -- diuretic to keep the fluid off
Asprin 1/2 tab -- 1x day -- blood thinner to avoid clotting
I just don't know where we go from here. We'll see Dr Stock on the 9th. I'll notify Stanford at that time if there is no change, or sooner if he gets worse.
He is just SO happy, even laying around all day. I'm hoping he'll perk up tomorrow with Kamryn home all day!!
Thursday, May 27, 2010
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12 comments:
Sending HUGS to sweet Owen! I wish he could have his energy up and just play! Praying for your little guy!
~Elyse
You don't know me, but I've commented a few times before, and I read your blog regularly. I'm also a heart mama, but I don't have a blog for my son.
I'm so sorry to hear that Owen is feeling yucky. I know it's sad when even Elmo won't perk him up. My own son is totally addicted to that furry red monster. He's 20 months old. I'll say a prayer that Owen regains his spunk soon!
Chrissy
Owen is always in my prayers but I will take a few minutes right now and pray for him... And you...
Happy Summer Kamryn!!!
So sorry Owen's still feeling weary. Poor little fellow. There's almost nothing worse than that sinking feeling you get when you know that your little one is brewing something. Even if everyone else thinks they look fine, there's that inbuilt mother's instinct that just nags away at your insides. Really hope that tomorrow will be the day when Owen wakes up and feels great. Love and hugs xxx
I am sure Kamryn will lift his spirits, but in the meantime I was wondering if maybe he has a little G tube infection or maybe clogging? That would be where I would begin to look and the usual ear inspection. It just doesn't seem like it would be his heart, especially since it occured right after vacation when his routine was interrupted. Is he constipated at all? In the meantime know that he is my prayers to be back to his cheery self for summer fun.
Just love this little guy!
how do you find time to do anything other than meds & feedings? Seriously Andrea, I remember when Josh was fed every 3 hours & on 8 meds (mostly 2-3 times each) and that seems like a cake walk next to Ownen's daily med/feeding routine. My goodness. Well like I said yesterday, I really hope he perks up. I'm sad for you guys.
Andrea,
Wanted you to know I am thinking about you & Owen and saying some extra prayers.
I hate the uneasy mom gut feeling, I just hate it.
*Holding you close*
with Hope,
~ Chris A ~
oh andrea, I am so sorry for the rollercoaster. Praying for a more perky Owen and in the meantime try to enjoy all the cuddles you get from that cute little man!
It's a sick feeling, I know. You are Owens biggest advocate. Don't second guess that intuition! He's so lucky to have such a wonderful momma.
Praying for answers....and peace for you until you get them!
I hope he starts feeling better, sweet kid. We'll keep saying our prayers.
I'm a regular reader from California...I hope Owen is feeling better. It's scary when they're so sick, but your instincts are kicking in. Hope he (and you) can hold out until June 9th and that Kamryn is all he needs to perk back up.
Wow thats a lot of meds! I can't beleive how much lasix he is on! Kylie is now on 1ml at bed time to help the night cough! ? how do you give .005 of dig? Kylie is on 0.8 I hope I have it right??? Phew for the g-button Kylie yells at me no dig no dig and runs LOL I have been mixing all of them in her bottle, hope it's not a bad habbit???
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