Continued from Part One.

We were dreading the process of getting discharged yesterday, but it actually went very smoothly! The morning started with a roller coaster. Our PA on the floor that day (actually a friend of one of my old high school buddies!) came in and told us that her potassium was actually lower, so we knew that likely meant at least another day in the hospital. We had a big, long discussion about it — the benefits and risks of going home with low potassium. A few minutes after he left, he came right back in to tell us that the results we were looking at just hadn’t been updated yet with morning bloodwork! Potassium was in normal range! Back to our plan. The only thing that would keep us in at that point would be a bad X-ray. Later that day, we got our good X-ray and clearance to go home!

I bought a sweet little dress last summer for Sunley to wear home from her Fontan. She was very happy to put it on and show her nurses her light up shoes. We distributed a few gifts around the hospital, including an updated watercolor of her newly designed Fontan heart with the dates of all the interventions she’s had:

June 11, 2018- PA Band surgery

September 27, 2018 - Atrial septostomy via Cath

November 6, 2018 - Glenn and DKS surgery

August 11, 2021 - Collateral coil via Cath

April 18, 2022 - Fontan surgery

I made several to give one each to Dr. Heinle, Dr, Qureshi, Dr. Ayres, and our very special NP Meghan. I wanted to make more, but it feels impossible to include everyone who has made an impact on us. And of course I forgot to take pictures of all but one. I’ll probably make one for me too to frame alongside the one I did in 2018 of her original heart before it was changed. I like doing these watercolors of her heart. It makes me feel like I’m defending her perfectness — reminding anyone who sees it that her heart is not the broken thing in this equation. Her heart is beautiful, and this world is just too broken to sustain it as it came. Thank God for prayers. Thank God for angels. Thank God for the warriors that work in that hospital every day.

Sunley did a few walks around the unit with a little Instax camera, taking pics of whatever she wanted, and being just plain adorable. Before we could leave, we had to do one last unpleasant thing: take out the IV. Our nurse was liberal with the adhesive removing spray and got it off in no time. I don’t think it actually hurt Sunley much; she is just so scared of that part!

We had to switch our pharmacy from the local one by our apartment to the hospital due to a shortage of meds, but we got everything we needed, thank goodness.That’s yet another thing we were worried about last year — having to do the Fontan when all the crazy shortages were in full swing. While Sunley was super sick last summer and on oxygen daily, there was a shortage of oxygen tanks, which meant that she literally couldn’t leave the house until we had a tank (we used a concentrator at home). There’s been shortages in other supplies she’s needed, but we have always managed to stay 2-3 months ahead of what she needs, so the shortages never affected us, except the oxygen tanks for a short bit.

Discharge day is always pretty chaotic, even though there’s quite a bit of waiting. Compared to past ones though, everything moved fairly quickly and we got our outpatient appointments set up easily. We will see surgery again on Monday, and cardiology sometime after that. Of course, there’s a chance that we could end up back in the hospital, but we are hoping to finish recovery and tweak meds outpatient. We have a very loose plan to stay in Houston throughout the remainder of her sternal recovery (until about May 31st), but we may change our plan if we feel like we need to go home early (or later). Hoping for lots of slow-paced family time between now and then.

The first thing we did when we left the hospital was get that girl some Pho! We measured about 80 mL of the broth and she loved it! She had been asking for Pho during the whole hospital stay, but there wasn’t a nearby place, so we decided to save it for her celebratory dinner. Most of the staff had heard about the Pho and we assured them all that she would be getting it!

Today was our first full day out of the hospital. We were able to stay on her med schedule, and followed her fluid restrictions, measuring absolutely every sip she takes. The fluid restriction is MUCH more restrictive now that she’s in a more normal environment. She is asking for water all the time, and we just can’t give it to her. We got right to the limit of 770 mL today, but then when she went to bed, Sunley snuck a water bottle in bed with her and drank some before we caught her. Trying to explain that to her is very challenging, and doesn’t feel nurturing, even though it is part of our caretaking role now.

It’s totally heartbreaking and unnatural to limit her intake, and she doesn’t fully understand. She still struggles every time we do meds, and especially when we apply betadine to her wound sites. Unfortunately, tonight we had to take off the two large bandages over her fresher chest tube sites. It was terrible. She has a full-on phobia of taking off band aids and stickers, but on top of that, both bandages were stuck to the thick strings on her stitches, so I had to kind of push on the wounds just a tiny bit to detach the stitches from the bandage. I mean honestly, I’m kind of traumatized from tonight too, so I don’t blame her for screaming. I wouldn’t have been the least bit surprised if cops had been called to our apartment — that’s how bad it was.

We had a really good day together — we went for a walk and rode the train in Hermann Park, we rested, we played, we snuggled. No one there knew this kid just had surgery, unless they saw these tiny clues poking out around her neckline. Tiny little marks that tell a not-so-tiny story. What victory it is to see her be a kid again.

I noticed Sunley walking a bit hunched over today, so I think she had some soreness, but she won’t tell me when she’s hurting because she doesn’t want to take medicine. So I have to watch for it. The other 3 kids are very happy to have their sister home. Davis is very curious about Sunley’s scars, so we have to keep them covered or she’ll try and poke at them. Ruger has been really encouraging, and Hadelyn has been asking lots of questions. She noticed how skinny Sunley is right now, and is still pretty worried about her little sister. Derek and I are trying to find pockets each day to have one on one time with each kid.

Sunley is becoming aware of just how many restrictions she has, but she is doing pretty well with it. Our apartment is right beside the pool, so she was watching some neighbors in the pool, and asked, “When is my scar going to be white again?” And she’s asked a lot about going home to her rainbow room. She’s already pretty used to carrying her little lightweight stool around to get up on the couch, bed, etc. And she is definitely still getting tuckered out really quickly, and wanting to lay down quite a bit. All of this is a process, and healing will come in time. Her saturations when we left the hospital were typically around 94-95. We saw up to 99, and as low as the 80s, but they will eventually even out and we’ll know her new numbers. We are very much hoping for and praying for high 90s. But we will help her thrive wherever she lands.