We had another hard day today, but Sunley is still doing really well — we have had no real medical “hiccups.” The biggest challenge for us right now is her pain management — seeing Sunley be completely silent (except of course when she’s REALLY hurting) has been so hard. She is just emotionally totally shut down, and I don’t blame her! I have to remind myself constantly that it has only been 3 days since open heart surgery, and the kid still has two of her chest tubes hanging out of her, so of course she isn’t energetic yet!

We’ve started a 770cc/24 hr fluid restriction, which is typical for Fontan recovery. There was some miscommunication getting there, some on my part and some not, but it was all resolved today, and I was happy to see that we didn’t even get to 770 today. I think we ended at around 700 cc for the day, so Sunley is getting everything she wants, which helps her parents! The rest of her recovery will likely be centered around finding the balance of diuretics and fluid intake, and all of that hinges on her chest tube’s output. Once we get those chest tubes out, we’ve been told recovery usually speeds up big time. We are also hoping that after we remove them, breathing will be less painful, and her saturations will go up.

Last night, Sunley woke up around 4 am in a lot of pain, and due to that pain, she was desatting into the high 80s. This lasted for a few hours, so we did end up bumping her oxygen back up to 1 L. This afternoon, we took it down to .5, but now it’s back up to 1. Her RT came by tonight right before bedtime and said that her breathing does sound a little diminished, and her cough sounds a little worse, X-ray is just a tad hazy, but still no one is super concerned. Walking is the best medicine right now, and we hope that any little issues will be resolved by moving. This isn’t good news to Sunley, but it’s the only way home.

The walks are definitely the hardest thing right now for her. All the pokes, yucky medicine, etc is bad, but Sunley absolutely hates it when we tell her it’s time to get up. She was in so much pain today, but we really had to do a walk, so we waited until 11am because there was a “puppy party” with Bailey the therapy dog in the family room on this floor. At 11, we had Sunley sit up in bed, and it took her about 10 minutes to stand up. I was in the process of ordering Sunley’s lunch, so Derek and our PT worked on moving cords around, getting the pole set up, and getting Sunley ready to move while I was on the phone. I was on hold for about 15 minutes, and during that time, Sunley started desatting (again, just from pain), of course screaming, and then she suddenly cough/puked all over Derek and the PT. I’m sure you can imagine the chaos. I finally just hung up, we got the mess cleaned up, and Sunley fell asleep immediately, just leaning on Derek. After all of that, we realized it was 11:45 (at this point we had been trying to walk for 45 minutes), and so we got the wagon for Sunley to ride to the puppy party. When we got there, Bailey (who was wearing a yellow bow specifically for Sunley) gave Sunley some sweet snuggles and did a couple tricks for her. Sunley was totally shut down, but we invited Bailey to Sunley’s birthday party on Monday, and Adair, the trainer, mentioned that Bailey could wear a unicorn costume. Sunley immediately said, “Oh I love unicorns!” And I almost cried — it was so sweet to hear her happy voice again! That was one of only 2 happy sentences today, but she’s still in there, and I’m sure Sunley will be back to her feisty self soon.

We have had good nurses for this entire admission, and it has made such a big difference for us! They have really had Sunley’s back and put her first, and it is just really wonderful from a parent’s point of view. Sunley has such a big team here, and even the people who aren’t technically part of her squad on paper…they’re still on her team. The visits we’ve had from her past doctors here every day have absolutely filled our spirits, and those visits give us both the boost we need to keep looking ahead.

Day one I will sit in darkness

Until the light of your grace shines through

I will wonder where the light comes from

Until I forever shine with you

Day two I will gaze

At the openness above me

Waiting for it to fold open

Waiting for it to pull me home

Day three, amazed at what my eyes have seen

The beauty of all mysteries

Life about me, gardens abundant

Day four my God what have you done

The swirling lights are beckoning me

To come

Day five I will fly in the skies you have made

I will swim to you until my body gives out

Day six, oh day six

There is breath within me that I can’t explain

I will stay here until you call my name

I won’t rest until the days are up

Until the seventh day

I will work for you

Until the seventh day

I won’t find rest