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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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 the pleasure of seeing Dr. Heller yesterday for a checkup. It turned into a half day affair with blood work, etc.

Olivia weighed in at 14.7kg and is 39″ tall. She’s grown 1.5″ since February :). Her oxygen saturation? 96 - 98%!!!! BP was 87/57 and heart rate is 120.

Dr. Heller did an U/S of Olivia’s heart. Heart function looks great. There was a bit more mitral valve reflux (back flow) - more so than before surgery. Dr. Heller isn’t worried about it at this point. She noted more fluid in her chest area so we’re increasing her lasix with a a followup xray on Friday.

I was able to convince Dr. Heller to call Beacon Pharmacy and have Olivia’s coumodin compounded.

Meds:

Amox 2x day
Enalapril 2x day
Lasix: 3x day - up from 2x a day
Coumodin 1x day (1ml = 2mg compounded)

After we headed to the Lab for blood work. This became a production because the lab couldn’t find us in the system (helps if they enter her last name correctly). Finally they did a blood draw after about 45 minutes of paperwork and running around to Registration (our first time there in almost 4 years!) Olivia didn’t have the EMLA cream on but didn’t cry at ALL when they stuck her. She’s a brave cookie!

Her INR level came back as 2.04 which is exactly where they want her to be. No blood draws for two weeks and we go back to see Dr. Heller on 4/22 at 9AM.

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…

After 4 years of tears, of heart ache and fear…
After 3 heart surgeries, 1 stomach surgery
After 28 days in the hospital…
Countless stitches and blood draws…
After watching Sleeping Beauty 109x in the last 8 days…
1 pkg of M&Ms to use as bribery for medicine taking…

I got to walk out of this hospital. With a beautiful healthy, rosy cheeked little girl who now has pink fingers and toes and a gorgeous complexion. While I knew she was “blue”, and they told me I’d be amazed, I am FLOORED at how gorgeously pink she is.

Her spirit is still intact. She cries when they poke her and yet says thank you when they are done. So many people have complimented us on what a great job we’ve done with her. I don’t believe it was us … it was all God’s doing. She was meant to be here and we just gave her a chance to live.

We used to think oxygen levels of 80 - 83 were high. Today the monitor was beeping … why? Because she was hitting 100%. HA! To have it complain about 100 … who’d have thought it?

God is good. God is GREAT. My beautiful child, the one I was told to terminate because she would be so sickly and have all these problems … she’s came home today 9 days post surgery and she finally belongs to us.

Last night Dr. Heller stopped by and hugged me … I got choked up when I said “Thank You” because it really isn’t enough to say how grateful we are for her. There aren’t words available to say how grateful I am to that woman. How do you say thank you for the gift of your child’s life? I mean really … Thank You is nothing.

I haven’t really cried yet. I thought I would lose it pulling into the driveway. I got choked up when Maddie walked in the door and hugged me “I missed you so much!”. We’re a complete family - today is the first day of the rest of our lives!!!

And that’ s no joke!

It took ALL day (until 9:30PM) but we finally got the tube out! It had really stopped draining and we now know why … it was twisted two times over right near her stomach! (eek!) Katie took it out and after I asked if Dr. Mello would have removed it anyway. She said yes.

So tomorrow is the big day. Release day. We get to go home and live our lives forever and always … without anything hanging over our heads anymore.

Sorry for no update today but I kept waiting so we could post this.

We walked and walked and walked some more today. I think we did at least 7 laps today. She was cracking up the nurses because they would hear her coming. A lot were very impressed with how mobile she is but then again, this is our Olivia we’re talking about!

Even Katie commented on how frequently the fontan kids lie in bed for 2 weeks waiting for the chest tubes to dry up and then they forget how to walk … Olivia’s been cruising the halls since she came up here. Plus I believe it’s been really good for her to drain while being up. She didn’t nap long today and was WIPED out by bedtime. By 9PM she was snoozing away. Woke up at 10PM to pee and then immediately back to sleep.

Kate was our nurse today and she pretty much gave us free reign to walk. We were disconnected for hours today which allowed us to come and go as we pleased. We still had to use the grocery cart to put her chest tube drainage chamber in (and at one point even the IV pump for her antibiotics) but it was well worth it. Olivia really enjoyed the change of scenery as well.

Eating today was almost normal: She had a blueberry waffle and bacon for breakfast; blackberries for snack (yummy); a hotdog and ice cream for lunch; popsicle for snack and then she picked at dinner today (spaghetti with sauce, chocolate chip cookie, shake).

She has been fighting us (well, me) on taking medicines - even TYLENOL. So we had to start bribing with M&Ms. The coumodin has to be crushed and we finally found the magic potion — apple juice in a syringe. We told her it was in there because I didn’t want it coming back out.

No blood draws or chest xrays today. It was pretty much a mellow day. The cardiologist covering the floor, Dr. Salazar, didn’t see a point in sticking her today to check her INR levels since somehow she got less of a dose than was originally prescribed (we were supposed to be given 1.5 - up from 1.0; she was given 1.25). No need to check it since it wasn’t the right dose. I like her thinking :).

Olivia’s back to acting like Olivia. Sweet; shy; loving; giggly. There is nothing more beautiful than hearing her sweet giggle which she shared with me all day. We sat and watched Chicken Little and she giggled away. Oh I love this child!!!

Poor Maddie was really praying we’d be home tonight. She was angry that she couldn’t come up to see us but after school, drama club practice and homework … there really wasn’t much time. Add to that Arnie coming in late and she’s dragging in the morning. I told her we’ll be here at least two more nights because I cannot break her heart again :(. Hearing her cry made me want to cry. It is tough because it’s “crash” week for the drama club as their opening night for their play is Friday night. Tomorrow night they’re practicing until 8PM so she’s going to be wiped out still.

So that’s where we’re at. I’m hoping tomorrow is “the day” … but if two more days guarantees me that we don’t have to come back in because it was too soon, then I’ll wait. I’ve not got cabin fever just yet ;). Olivia and I are just craving home - the food, the comforts, our beds, our Maddie & Daddy.

I’ll post again tomorrow to let you know what’s up!

Olivia drained a lot yesterday so it looks like we may be here for one more day. BUT she’s doing awesome otherwise.

She’s making the laps around the floor - walking the entire floor. We did THREE laps today already before spending a good half hour in the playroom. She uses the toy grocery cart to store her chest tube chamber and away she goes!

Olivia is insistent that she will be able to take home the chest tube. She’s not looking forward to having it removed.

There’s still a slim possibility that we’ll be discharged this afternoon but it’s more likely than not we’ll be here another night.

Update: we’ve drained 90cc since 10:30am (when we walked around). So it’s 99% likely we’ll be here one more night.

It’s been a GREAT day. And you know what? Tomorrow might even be BETTER because there’s talk that … WE.MIGHT.BE.COMING.HOME…TOMORROW!!!

Dr. Mello came in to find Maddie & Olivia in bed together. Maddie was playing with playdoh and Olivia was drawing with markers. Kind of looked like this:

but with markers and playdoh. Note: this was taken yesterday

Dr. Mello is VERY pleased with Olivia’s progress. Said if he weren’t so conservative we’d be heading home today! (insert a fainting smile right here ;)). But he anticipates we’ll be out of here either tomorrow or Tuesday at the latest!!!

Olivia and I had a good night. I got her to finally sleep around 9:30PM. She woke up around 4AM and after peeing and drinking more she watched Sleeping Beauty twice while I “snored” according to her ;). She ate mostly fruit for breakfast and then ate half a grilled cheese sandwich for lunch. Progress…

We went to the playroom after she walked about half the floor. She’s having a great day. Took a nap while Arnie watched the UCONN game. Now is watching Garfield with Maddie and just hanging out.

So we’re almost done. ALMOST. And I cannot wait to bring my baby girl home from the hospital for the final time!!!