Yesterday I took Olivia for her INR blood test. Olivia rocks and they love her there!
In the afternoon I got a call from Karen. Olivia INR level was 1.54. :::Sigh::: It’s just so confusing because we’re giving her the correct dosage. The plan is now to give her 3mg daily (1.5ml).
The good news is that we’re less than a month away from saying “good bye” to Coumodin! June 24 is our last day taking it. Karen said we have one more blood draw – which we’ll do on June 10.
Our Little Hearts picnic is this weekend so be sure and stop by early next week for some updated pictures!
Here are some pics:
The actual day
“Dress Rehearsal” – making sure everything went together.
Greetings from Waltham, MA. I’m here for training this week and of course one of the girls has to be sick when Mama’s away!
The unlucky child this time is Maddie – our child with the immunity of steel. She started a fever on Saturday afternoon right after making her first communion. Sunday it was up to 103. Monday she was ok but not 100% so Arnie took her to see Dr. Friedman at 4:15pm. She was diagnosed with a sinus infection. Today she’s feeling almost 100% but woke up with a slight fever so Arnie stayed home with the girls.
Olivia had her INR level tested on Friday and it came back at 2.1!!! PERFECTION! We have to go back on May 30 for a retest. What a relief!
Prayers are needed for two of our heart friends.
First is our friend Sammy who is having his fontan tomorrow in Boston. Ironically I’m here in the Boston area so I’m going to try and get over to see them either tomorrow or on Thursday. Erika’s been a wonderful source of support for me and I’ll be happy to return the favor.
Second is for our friend who is having some issues with lower than expected O2 levels post Fontan. His doctors have decided he needs to have his fenestration closed. A fenestration is a small hole that was created in his heart during his Fontan surgery. (Note: Olivia doesn’t have a fenestration as Dr. Mello does a different type of surgery than they do up here in Boston). His mom Ruth describes it better than I do.
Please stop by both websites to offer your support and prayers.
Please keep both families in your prayers.
After the last blood draw I emailed Dr. Heller to make sure we’re not missing something. We were at 2.02 at one point and then it dropped off after going to a compounded formula.
Dr. Heller and I emailed back and forth and then at her suggestion I called Beacon Pharmacy (where we have her meds mixed). I spoke with the compound pharmacist who said the meds are good for 3 months in the fridge. We’re going to make sure to mix the heck out of the meds before giving it to her so we’re hoping to have better results from the blood draw on Friday.
Now on to the “Things “Normal” Parents Don’t Worry About” file:
Monday morning Olivia fell out of bed in the morning. We woke up to a thud and a scream at 5AM. Scared the you-know-what out of both of us. Arnie got her back to bed with her music and I fell back to sleep. She came into bed around 6:30am complaining about a headache. And she fell asleep on the way to Diana’s.
Now anyone else wouldn’t have to worry but we have to … we have to worry about bleeding in the brain from the fall, etc. I called Diana three times yesterday to make sure Olivia was fine. She was fine but it’s things like this that remind us that even though life is amazing … it’s never “normal”.
We’re at 1.64. Still not where she should be.
Upped the coumodin to 3mg 5x a week and 2mg 2x a week. Followup blood test will be May 16.
It’s been a couple weeks since I last updated so here’s a condensed version:
Olivia: Doing GREAT. She’s seriously amazing. I cannot express in words how great she is doing. She’s running, jumping, acting like a NORMAL KID. It’s a beautiful thing! I joke that when people ask me how it’s going I say “it’s like puppies and kittens and newborn babies and roses” LOL. Life is THAT GOOD now that we’re past the Fontan. She’s showing us she can draw. She drew me a fish and a bird and a Mickey Mouse this past weekend. I’m amazed at her artistic ability but then again she gets that from her daddy.
Olivia’s going for bloodwork tomorrow regarding her INR level. Her last draw on 4/22 showed a level of 1.4 which is lower than they want. They increased her coumodin to 1.5ml 2x a week and 1ml the rest. We’ll get an update on her levels later tomorrow.
Maddie: She’s LOVING the spring weather. She started softball and is definitely naturally athletic. She plays on the Rockhounds which is part of the Farm league (one step above t-ball but they use pitching machines). We’re still working on getting her biking without training wheels. She did really well but she is afraid of falling so … baby steps … :). It’s hard to believe she only has one month left of second grade!