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!!!

Last night I went home with Maddie, thus no nightly update as Arnie didn’t do one.

BUT, our little Miss is doing fantastic! When I left last night she was heading down the hall in a wagon to take a ride around the wing. Then she went into the playroom (FINALLY) and got to play a bit with the puzzles and a few toys. She made friends with Abby, a little girl on the floor who has leukemia.

They both slept well last night and were woken up by xray. Katie stopped by and pulled ANOTHER chest tube (hooray!!!). So we’re down to one chest tube. AND she’s off the blow-by oxygen!! Her oxygen is 93% on regular room air (hooray!!!).

Olivia WALKED the floor this morning. She used a kid sized grocery cart and she took a walk up and down the hall. And then went into the playroom and spent a good amount of time playing.

She ate a decent lunch (most of a hot dog, a ton of strawberries). Breakfast she inhaled (eggs, bacon). She’s now watching Sleeping Beauty, nibbling a munchkin and talking to Auntie on the phone. Maddie was lying next to her in bed before but just got up to give Olivia another munchkin. All is well and we’re having as perfect a family day as you can have in the hospital.

Dr. Salazar says the only thing keeping us here is that last chest tube. As soon as it’s out we’re on our way HOME!

More info later if anything changes.

We’re up on the floor!

We have had a busy busy day. Olivia actually got out of bed and walked to the potty this morning in the PICU. I then got to hold her chest to chest and cuddle her up. It was sheer heaven for both of us.

Katie removed Olivia’s center chest tube this morning and they removed her atrial line (?) – the line they were using for blood draws. They can’t come out of the PICU until that is out.

Olivia rode a wagon to the new floor and was waving to her royal subjects ;). We’re in room 801. It is SO much quieter up here – even the chest tube machines are quieter up here (although we took them with us so it’s nothing “new” – the room just seems quieter).

Olivia is resting quietly after just going potty. She is using a bedside commode but with the chest tubes she was in a lot of pain. It’s hard to juggle everything and I felt terrible that I even accidentally hurt her when moving her around. She is wearing her pink pj’s (tops AND bottoms) and she looks GREAT. They just gave her some tylenol for pain and we’re going to head down to the playroom (next door) when she wakes up.

So all is well and now we just wait and heal and dream of dry chest tubes so we can come home. I’m heading home for the first time tonight with Maddie. Maddie has her communion retreat tomorrow and then we’ll head up here for the day.

Have a wonderful afternoon!

Good morning. Yesterday was pretty dang amazing. Olivia had a decent afternoon but wasn’t eating terribly much. then around 4pm her cousins Christopher and Cole came by to see her. We had to pull some strings to get them on the floor (no one under 14 unless a sibling is allowed) but Maribel said “yes”. Olivia was GLOWING when she saw them. It was the first time since she went down for surgery that she was giving out REAL smiles. They were exactly what she needed!

Unfortunately her IV blew in her hand and she got very upset so we cut the visit short. They placed another IV in the top of her hand which is giving her a lot more flexibility to move her fingers.

Olivia’s good mood carried through the evening to our visitors: Nana, Poppy, & Maddie; Fellow Heart Parents: Laura and Keith; and finally we got to meet Paul J. Paul’s mom Sasha works with Arnie and Paul just had his fontan last summer … at age 13!!!! It was so nice to be able to hug an older “heart child” and you can tell just by looking at him that he’s doing fantastic. He was a sweetie, telling me what hurts for Olivia and what I should discourage her from doing because it will hurt (such as using her arms to pull herself up in bed).

Tom was on last night and he said she as an absolute doll for him. She stayed awake until 11PM and is still asleep. We’re going to have to adjust her sleep patterns back when we get home but it’ll all be ok because she’ll be HOME!

So today is the day we move to the floor. Unless they want another fight, she’ll be moving to 8. I’ll post again after rounds to fill everyone in. I’m thinking we might lose the center chest tube this morning but I’m not positive that Dr. Mello is going to pull it. He’s very conservative in pulling them because he HATES to put them back in (extremely painful for patients). He did pull her pacer wires yesterday and she was happy to have those gone. One less wire = one step closer to home … FOREVER.

Have a great day!!!

Current score:

Mom to Olivia: 1

Director of ICU: 0

Olivia is staying in the PICU this evening. Apparently when Maribel came in this morning there was a “tx” next to Olivia’s name indicating she would be transferred upstairs today Then after rounds … it wasn’t there anymore. Maribel wanted to know if I had gone in and messed with their board LOL.

Olivia is having a great day She’s won Maribel’s heart “she looks and acts like an angel” (wub). Megan from Child Life came and painted with Olivia so she loved that. And she took a very long nap this morning but was interrupted by Dr. Mello who removed her pacer wires Woohoo. One less thing to worry about! He was so sweet and apologized to her about waking her up from her nap.

She’s not too interested in eating today … I’m trying ever trick in the book to get her to eat. She drank almost a container of chocolate milk for lunch but otherwise I could only get a bite of string cheese and two spoons of corn into her.

She was cute when I was trying to get her to decide what she wanted to eat for breakfast – she said “this is like a hotel”.

So we’re hanging in there and we’re hoping to have a great afternoon / evening to just round out a perfect day.

Well, it looks like we’re most likely moving up to the floor! I’m not sure how I feel about that.

Dr. Zucker (Director of ICU) and I butted heads slightly

over this. I feel she needs to stay in ICU one more day but he says I don’t have a say in it. I agreed as long as they move her to the 8th floor which is the “clean” floor (cancer unit). I will go kicking and screaming if they move us to 7 where it’s loud and busy and it’s the general population of sick kids. My “no spleen, cardiac” kid doesn’t need to go to a general floor. They agreed with me and asked if I wanted a job ;).

Her chest xray looks good and she’s sounding better on the left side. She’s on “blow by” O2 (no more in the nose stuff) and holding at 95% oxygen.

Her INR was 1.2 which is great (this is the amount of blood clotting stuff she has in her – they want it to be 1.8 – 2.5 but they were very pleased with the 1.2).

The plan otherwise:

* ICU told us Dr. Mello would be pulling two chest tubes. Dr. Mello says he’s not pulling any of them just yet. He will pull her pacing wires before we go to the floor though.

* They’re going to switch her to oral lasix as she’s peeing / outputting more than she’s taking in.

* They are going to remove the zantac since she’s eating now.

Speaking of eating, she ate a bit of eggs and bacon this morning before taking a nap. She’s still napping comfortably which is good. She’s peeing well and using the bedpan. Dr. Berning (cardiology) says they can probably get her a bedside commode for when we go to the floor which will make her more comfy I’m sure.

More information later as we know it.

Good morning.

We had a FABULOUS night until the fire alarm went off at 5:15AM. I woke up to noise and flashing lights. I couldn’t even focus and grabbed my purse, my shoes and what I thought was my sweatshirt.Turns out it was my winter coat …

No one had told us what to do so we did what any good parent would do … we went to our kids. The nurses weren’t sure if it was a drill but the fire dept was here and so I’m sure I’ll hear more later.

Olivia had a FABULOUS night! Tom said she was a DOLL. She had some OJ and an orange Popsicle. She wanted to watch Dora and we didn’t have any in our “bag of tricks” so Tom found some that they keep on the floor.

The most beautiful thing is that she’s holding her own at 98% oxygen … little stinker took off her O2 and tucked it under her chin. She’s only on 1/2 liter so I’m pretty sure that the oxygen is going bye bye this morning. She looks so pink and was resting comfortably when I went in to see her.

We had a visitor last night – Mike, Aaron’s dad, came up to see us. My longtime readers will remember that Aaron received a new heart last summer up in Boston. Aaron is doing fantastic and Mike was thrilled to see how with great Olivia was doing. Mike was shocked to know that we ICU parents have actual sleep rooms with showers here at CCMC. We’re in a separate little wing off the ICU with four bedrooms (very tiny with a chair, tv, tiny closet and a daybed that has a trundle under it). We share two bathrooms that have showers in them and a small kitchen with fridge, microwave and a small table with a couple of chairs. It’s very peaceful here and we appreciate having a quiet place to rest at night. I know our friends up to Children’s Hospital of Boston don’t have a separate sleep area so I am very appreciative of this.

Now I’m going to jump in the shower and get ready for the day. Tom said he hopes we’ll still be in the PICU tonight (as in we might go up to the floor! EEK). Tom is working so maybe I’ll push to keep her here one more night before they send us upstairs. Also, Tom was going to make sure we had Maribel today who was our nurse yesterday. Consistency is the key to it all imo.

Have a wonderful day and I’m sure I’ll update later when we have some news on the “plan” for today.