Yesterday was a summit, and today was a valley. And that’s ok; That’s typical Fontan recovery. Sunley woke up just not feeling herself, and has barely eaten all day. We were planning to do 2 or 3 walks today, but our morning one was put off while she took a huge nap. We scheduled PT to come by at 12:30, since Sunley was scheduled to have her IV Toradol at noon. Unfortunately, noon meds came and after about 3 minutes of administering it, we noticed Sunley’s hand was sitting in a puddle of Toradol — Her IV had gone bad. After surgery, Sunley came out with four IV’s - two in her hands, one in her leg, and the central line in her neck. But since then, we’ve gotten down to just the one, so we had to take it out and call the VAT team to come replace it. At lunchtime. On a Saturday. Sunley had to wait for three and a half hours to get her Toradol. She wasn’t in too much pain at first (we think a little bit of Toradol must have made its way on board), but after a while it started to show. We gave her some extra Tylenol, but finally at about 3pm, she started screaming out of the blue, “My heart! My heart!” and grabbing her chest, so it was time to get some oxycodone. She hated taking it so much that she tried to convince us that her heart wasn’t hurting, but we finally got her to take it. We were still going to try and go for a tricycle ride, but as soon as PT came, VAT finally showed up so we couldn’t go. PT had already stayed late for Sunley, but when she saw Sunley, she suggested we just let her rest if we felt like that was best, and we did. We asked to keep the tricycle for later, but liability. And I get it. Today was just not our day.

VAT was super apologetic, and did a really good job getting her IV in on the first try — not easy when the kids is on diuretics and barely eating. Since we had just given oxy, we’ll just go back to our regularly scheduled Toradol. Sunley fell right to sleep with some Momma snuggles after getting the IV, and we’re calling it a day. When she wakes up, I plan to try to convince her to blow bubbles and play with some toys, but I’ll be honest — If the girl asks for a movie, Imma say yes today. And I might watch one, too.

On top of all of that, Sunley’s right chest tube actually increased its output. Although, I don’t think that’s necessarily a step back; It could just mean that the diuretics we added yesterday are working. And on that note, we were supposed to start chlorothiazide (Diuril) yesterday, but had a clerical error, so that’s now on board today. So even if output increases again, I won’t worry too much.

We are trying to wait and pull both chest tubes at the same time to save at least one instance of trauma, but the left one is pretty obviously done, and it is the one causing her so much pain. I’m gonna let surgery lead the way on that decision, but I won’t be surprised if we have to pull them separately after all.

It is really heartbreaking to hear Sunley try to reason with us about her meds and pokes. She definitely doesn’t understand why this has to keep happening, but I’m just continuing to tell her the same things, and being really consistent with what we’re doing as far as rewards and lots of extra snuggles. Derek and I are both emotionally drained, but we also find a lot of purpose in days like this. It’s hard to explain, but even the bad days aren’t only bad.

Praying for a summit tomorrow instead of a valley.

On the plus side, I wrote a new song tonight while trying to entertain Sunley:

I am feigning all this interest

In my least favorite of all toys

I wish that they would market these

As only for the boys

I hate legos

They are really not that fun

They’re basically Ikea

Except the prices are so dumb

I don’t understand

What the hype is all about

If you didn’t love them all that much

I’d for sure just throw them out

Now let us take a moment

To evaluate the truth

These toys are LITERALLY designed to break

And the pieces will be strewn

We’ll never find them all again

They’ll never be the same

If you’re really being honest

Yes you’ll say that these are lame

I hate legos

They are really not that fun

They’re basically Ikea

Except the prices are so dumb

I don’t understand

What the hype is all about

If you didn’t love them all that much

I’d for sure just throw them out

…I’m fine guys.

One last win for the day:

I went to Starbucks to get our little warrior some chocolate milk and a cake pop — I thought surely she’d at least eat the cake pop (spoiler: she didn’t). The lady at the counter asked whose birthday it was, so I shared that Sunley was in the hospital, and she immediately canceled my order and paid for it herself. Her name is Monique, and I’m pretty sure she might be an angel. I’m hoping we can meet her when we get discharged. Small acts of kindness, always.