Update for March 29

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.

Update # 2 for March 28

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!

Update # 1 for March 28

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!!!

Update # 3 for March 27

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.

Update # 2 for March 27

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.

Update # 1 for March 27

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.

Update # 5 for March 26

Olivia had a rough couple of hours this afternoon. She decided on her own that she wanted the foli cath (urine) out so that was removed around 6pm. We had a nurse from 3:30 – 7PM who needs a little interpersonal skill retraining. First nurse in 4 years like that but the timing was rough. We’ll leave it at that but my mom walked out to see my dad after visiting Olivia and said to him “I am SO glad Tom is on tonight because I do NOT LIKE that woman!”

Olivia got to sit up in my arms this afternoon. Sheer heaven for me, but she was uncomfy I think. Add a dose of potassium via IV and she was REALLY having a tough time. The potassium burns when it goes in and she was FLIPPING out. It broke my heart to see her like that.

She napped for a good long while this evening after the excitement of the potassium and is just waking up and looking pretty good. With Tom on the job we know she’ll have a great evening and all is well.

You’ll hear from me in the morning… :) Thanks to all for your comments and for reading. They mean the world to all of us.

Update # 4 for March 26

We have two less wires!!!

Dr. Mello came in and removed two of her heart lines – the one going to the Fontan and the other that was in her heart measuring her heart pressures. Olivia did AWESOME and it’s a great start to getting out of this joint.

He also said she can start EATING “anything she wants”!!! Watch out cafeteria … Olivia is going to start EATING!

She’s doing awesome and we’re well on our way.

Update # 3 for March 26

A slight change in the plan: Dr. Mello was contacted and he wants to wait until tomorrow to pull the chest tubes. Because she’s on lasix, he’d feel better not pulling them today since she is still draining a bit.

He’s going to be back in Htfd later today (he’s at Yale operating this morning) so he’ll stop in later to check on her and possibly pull the chest wires / ivs later.

Olivia is resting very comfortably right now. Maribel (our nurse) reduced her oxygen to 3 liters (down from 3.5) and Olivia is holding steady at 98% on her O2 sats. Also her respirations are fantastic at 32 – 35 breaths per minute which is SO much better than the 65 – 70s we were seeing yesterday (she was panting more than taking deep breaths). Blowing bubbles has definitely helped her out.

More information as we know it later today! :)