Here’s a video I took tonight of the girls – Maddie learned the song “the devil in disguise” at school of all places (LOL) and taught it to Olivia. I didn’t even know they knew the song until Olivia started singing it at the hospital today!
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 met Dillon’s family the day Olivia had surgery. His aunt and I first chatted while waiting in the PICU waiting area. Then I met his mom and dad. Then gramma.
Dillon had a rare type of cancer that apparently was too much for his little body. Dillon passed away this morning at Boston Children’s Hospital, less than a week away from his scheduled bone marrow transplant.
Please pray for Dillon’s family as they go through this horror. No parent should have to deal with what they are dealing with right now.
Olivia’s left chest tube site has become infected. It’s been red for almost a week.
Arnie mentioned it to Katie at the appointment on Friday. She gave us an rx for keflex to keep on hand but felt at that point it just looked irritated and not infected.
Today I took a look and it didn’t look any better – if anything it was worse. My mom also didn’t like the look of it. So I first tried Dr. Friedman – she’s on vacation this week. Next: Dr. Heller. Also on vacation today. Next up was Katie, Dr. Mello’s PA. I left a message for her since they were in surgery. And I emailed her a picture of the area.
She called back and recommended we put her on the Keflex. Stop the amoxicillin for the time being. She made a comment that if we weren’t such responsible parents she’d have us come in for a follow-up (awww – we’re responsible!). But I mentioned that we’ll see Dr. Heller on Tuesday, April 22 so we’ll follow up then. She said there’s nothing to culture at this point but if it were to start to bubble with puss under it, she wants us to call the office and make an appt so they can culture it.
The good thing is it’s not bothering Olivia at all – she’s acting normal and not complaining about any pain. No fever either. We’re noticing her appetite is definitely coming back as yesterday she was PUTTING the food away like nobody’s business! She must have had 3 pieces of cheese in the afternoon and then ate all her dinner PLUS some of the pizza I made for myself. Life is good 🙂
Olivia had a followup xray done this morning. She sat nicely for the xray and Arnie said she did awesome. They then went up to see Katie with the report. Due to the reduced fluid in Olivia’s chest, we can go back to 2x a day Lasix. According to Katie, there’s a “tiny bit of fluid left” so we’re in better shape than last Friday. It helps that Olivia has been running around all week at Memere’s. Katie also listened to Olivia’s lungs and everything was clear 🙂
Arnie had Katie take a look at the spot where the left chest tube had been. It is a bit pink and “ugly”. I wanted to make sure she took a look. Katie wasn’t too concerned about it but gave us an RX for Keflex in case it turns red and angry. We won’t fill it unless things change.
So we’re all set for two weeks until we see Dr. Heller on April 22.
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.