Three months ago today Olivia had her fontan. Three months ago…
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I’m behind in the updates so I apologize for this being all over the place.

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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!

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.

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!

Olivia saw Dr. Heller this morning.

Our first stop was the lab to get her INR level checked. I brought along a candy necklace for distraction sake and we did the blood draw without the numbing cream (yay!).

Then on to see Dr. Heller who was wearing scrubs! I don’t think I’ve ever seen her wearing scrubs so it was a bit shocking to me :). She looks cute!

Olivia is the same weight and height as two weeks ago (14.7kg - 32lbs, 39″). Dr. Heller didn’t bother with the EKG today - she just listened to Olivia’s lungs and heart. She commented that her chest tube scar looks really good (the one that was infected). We still have a scab on it but it’s looking much better.

Next was an EKG - the backflow is still there but no WORSE (or better) than it was post surgery. On a great note, it appeared there was NO more fluid in her chest (wooHoo!). To confirm we headed down to xray.

Xray was pretty quick and then back up to Dr. Heller’s to verify the xray looked good. She had me into their conference room and we compared the xrays from today, two weeks ago and 3/10 (our pre-op appt). The xray looked AMAZING. Interestingly enough, Olivia’s diaphragm on the left is a bit higher than on the right - it’s just the way she is made.

So the “plan”:

I got a couple pics of Dr. Heller with Olivia that I’ll post in the next few days.

Of course we cannot go too long without talking to Dr. Friedman - Olivia must think that she’ll be jealous that Dr. Heller’s been dealing with us alone LOL. So tonight I noticed her cheeks are red and bumpy (great). We first called Diana to confirm Olivia didn’t eat anything new or unusual today. Then I called Dr. Friedman’s cell and we both came to the conclusion it’s an allergic reaction to the Keflex. So we gave her a dose of benadryl and we didn’t give her an antibiotic tonight. Tomorrow we’ll start back with the amoxicillin.

Never a dull moment!!!

Olivia started back at Diana’s yesterday. And it is so NICE to have things back to normal again. She’s feeling GREAT; running around and life is just SO GOOD. The first three months of 2008 was sheer hell waiting for the surgery and now … it’s just perfection.

And now I’m going to share a secret with you all that I ask you do NOT share with the girls as this is their joint birthday gift. We’re taking the girls to DISNEY WORLD in August! We were going to wait until next year but honestly, we just need to get away and be a normal family again in our favorite place in the World! For us, there’s nothing more enjoyable than Disney together. We’ll be there for our 12th wedding anniversary.

We had our first post surgical appt today. We had to go in and have a chest xray done, then meet with Katie. Finally we went to the lab for a blood draw.

Olivia is doing great. Katie was pleased with her xray - there is still a bit of haziness in the bottom of her left chest area which could just be the tiniest bit of fluid or maybe her lung hasn’t fully expanded from surgery, etc. We’re just going to keep an eye on it.

Katie removed two out of three of her chest tube stitches. The left one is still in and they’ll remove it on Tuesday when we go see Dr. Heller.

We weighed her while there and she weighed in at 15.6 kg - gaining weight in the hospital! Wow! The xray was uneventful now that they allow her to sit or stand for it. Bloodwork - Katie put the EMLA cream on her ahead of time. Olivia just cried because she knew it was a blood draw and she didn’t want it to be done.

Katie called later in the day to let me know her INR level (clotting) was 1.92. Which is exactly where they want her to be. So we’re to continue with the 2mg coumodin.

Now a question for all the heart moms out there. Olivia HATES the coumodin. They do not compound it so it’s in a pill form. I need to crush it up, then mix it in something. Olivia gags on it regardless of what we put it in. We’ve done yogurt, pudding, apple juice. HATE.

Tonight she threw up ALL her meds while we were giving her the coumodin mixed in pudding. We had to call in to cardiology to find out if we should re-administer all the meds she had previously taken. Dr. Lapuk called and told us to not give her everything and to start fresh in the AM.

Suggestions on getting her to take this stuff? It’s going to be a LONG three months if we cannot figure out a solution to this…