Day Ten

Day 10 in the hospital, 9 days post-op!

Another good day, with discharge on the horizon! Sunley woke up feeling terrible. She was super lethargic and pale, and had some tummy issues that were causing her a lot of pain. She is woken up each morning when it’s time for a finger prick, so that’s a rough way to start your days anyway. We had planned to do PT at 9 with Candace, and she was not having it today. She rode the bike a little bit, but didn’t want to participate in any games or play with any toys. Poor Candace has only gotten to work with Sunley on her bad days! Hannah and Denzel got the good days. We brought her back to her room, and she fell right to sleep for about 3 and a half hours. After that, though, she seemed to be much better, so I don’t know what it was, but it was relatively short-lived.

The biggest news of the day is that Sunley is NOODLE FREE! Surprising to everyone, her chest tube output dropped significantly, enough to go ahead and pull the tube. It was terrible, but it’s over now. The only thing Sunley has on her now is her pulse ox probe and her IV. Her chest Xray showed a little improvement on the tiny pneumothorax that they saw, so no real concerns there. 

After she started feeling better, we went on several walks, including exploring the skybridges, and played in the Child Life playroom for a bit. Our next door neighbor went home today, and we expect (loosely expect) to be closely behind. I guess we’ll just be watching her numbers over the next couple of days to make sure we go home on a balanced amount of diuretics. They will be weaned outpatient by her usual cardiologist.

Unfortunately, taking oral meds has become just a really difficult task. Sunley had to go back on potassium today, the worst oral med known to heart toddlers, and immediately threw up SO much when she took it. She has thrown up every single time she’s had potassium. So now, we are giving the tiniest bit every 20 minutes until the whole dose is up. And even that is such a fight.

This entire Fontan recovery has been so incredibly draining, and I doubt that being home will actually be easier at first. But we are so grateful that everything has progressed without any major complications. Sunley is ready to go home and be with her siblings. I’m ready to go literally anywhere for 24 hours by myself and sleep, but that won’t be happening for a while. Seriously though, I am looking forward to all four of my babies being in the same place again. Davis, the youngest, is especially having a hard time being away from her Mommy and Daddy. I recorded a looping video of me singing some of her favorite lullabies that G (my mom) plays for her at night to get her to go to sleep.

Derek and I have been switching off going home each night to tuck in the kids before coming back to the hospital to sleep. It’s been really great for the big 2 kids, but for Davis, I actually think it’s made it harder. She will NOT go to sleep when we put her down, and she’s been sleeping in a big bed with her sister or grandmother every night that we’ve been gone. Not sure how that’s going to play out when we get home.

Sunley’s saturations have been around 94 to 95 today, but she is still dipping towards the end of the really long walks. It will definitely take me a little while to get used to her new numbers, and to understand what’s ok for her and what’s not. It’s always overwhelming at first, but we’ll find our new groove eventually.

After her noodle removal, Sunley was finally able to give me a good, wrap-around, normal hug! It was so very sweet, but I also felt for the first time how skinny she has gotten. She definitely looks thin, but to feel the “lack of squish” was so sad. We added pediasure yesterday, so hopefully I’ll get back some of that baby softness.

This recovery reminds me a lot of her recovery after her first surgery, the PA Band (although that one was much longer, if things this time go as planned). The whole recovery was about finding the balance of diuretics, and Sunley lost so much weight, most of her hair, and just looked rough. Although, I didn’t really realize how rough she looked until months later, looking back at pictures. This admission is much worse, even if it’s shorter, because TODDLER, and because she has, ya know, real life outside the hospital to which she can compare!

Hoping for another good update tomorrow!

Post-op Day Seven

Day 6 post op, April 24th:

This was Sunley’s last day as a 3 year old! She had a good day. We stopped potassium (thank GOODNESS), and CAME OFF OF OXYGEN! Her saturations are still in the low 89-91 range, but everyone is very confident that once we take out the chest tubes, those saturations will come up quite a bit.

Her right chest tube is still putting out quite a bit, but it decreased again today. We expect a big dip tomorrow because of her diuretics regimen she is on. We are leaving the left chest tube in for now, even though it’s done, so that hopefully we can pull both. Who knows, maybe even by Tuesday? Sunley went on 3 walks today, including a tricycle ride, and all of that should be good for getting rid of those chest tubes! She’s barely starting to talk to just a couple select nurses, but is much less reserved with Derek and me than she was just a few days ago. 

We have planned a birthday party for her at the hospital tomorrow with siblings and two grandparents, so that should be fun! I also got to meet another heart mom for coffee today. Her son was just discharged from a few doors down after his Fontan, and it sounds like they are having very similar recoveries. He had surgery a week before Sunley.

Day 7 post op, April 25th:

Sunley had a great birthday. She got SO many gifts and visits, and I know she felt so special! She even got exactly the birthday cake she wanted, thanks to Madilyn Crouch, who lives nearby. She had balloons, streamers, and all the typical birthday things.

Our birthday party was certainly different than we planned, despite getting permission beforehand. There has understandably been a lot of miscommunication about visitor restrictions, since it’s constantly changing. When my parents and the kids arrived, even though we had cleared everything days prior, and over and over again leading up to today, the charge nurses wouldn’t let them in. I came out to the lobby to see why, and they told me that we could only have one person in at a time, and that the others would have to wait their turn, and couldn’t even stay in the lobby on our floor.

I felt like my reply was appropriately firm but still respectful:

“We cleared this beforehand so exactly this situation wouldn’t happen. And we will absolutely follow whatever rules y’all have in place. But just to be clear, if this is because of germ precaution, instead of everyone coming into one room and keeping everything contained, you would like us to go to the busiest floor to wait our turn, and use the elevator multiple times, which would put the germs everywhere and expose more people?”

They stared at me and said absolutely nothing. And for the first time in 4 years of multiple stressful days in the hospital, I finally cried in front of the staff. I apologized for crying, and told them I know they are trying to do the right thing, but I also said, “You HAVE to get everyone on the same page. Because they were fine to visit in ICU and literally no one knows what to expect day to day. Our kids want to be together, and we have no problem with the rules, but you have to tell us beforehand and stop just throwing it at us.”

I went into the lobby to break the news, and Ruger started crying, which made me angrier. Everyone else went to floor 3, the busiest floor, and I took Ruger into the room for birthday party #1. A few minutes later, the nurses came in and told me they decided Hadelyn could come in the same time as Ruger, but the adults would have to switch out. Fine, that’s what we did.

We had multiple shuffling, and trips to the elevator, and during one of those switches, the nurse came in while only my mom was with Sunley and stripped Sunley’s chest tubes. So I walked in as Sunley was crying and my mom was comforting her — not ok. It was done, so I didn’t say anything. We had a great day. Sunley felt very special and had a great birthday. And I LOVE TCH. But sometimes, yall. Sometimes.

We had visitors make a paper snowflake and sign it, and we hung them on the wall. Those are keepsakes for sure! We also have had nurses and doctors sign one of her hospital gowns, so we’re definitely keeping these things forever.

At rounds this morning, the team wasn’t really happy with her output in her right chest tube. It just hasn’t decreased as much as they’d like it to. Her BUN was up also, and so we can’t add diuretics right now. They’re hoping that the elevated BUN is from all of the Toradol we used, so that is gone now (and she seems to be doing ok pain-wise without it). We will pull the left chest tube tomorrow (Sunley calls them her noodles, and she does NOT want anyone pulling them) and revisit the diuretics plan to get her tubes to drain more. There was talk about going on a very strict no-fat (or was it low-fat) diet, but we aren’t there yet. 

When we told Sunley about the chest tube tomorrow, she seemed really sad. After a couple hours she said, “Mom, I don’t want them to pull out my heart!” Poor girl! No wonder she is so scared!

Sunley did fantastic with PT today, and was even a bit talkative with the (female) therapists. She is hoping to visit the playroom in the morning with the Child Life team. Sunley wore her biker jacket and new sunglasses on her ride today, and told the PT that she is faster than her brother, Ruger. 

She is doing really well. The older kids are being cared for, even though we deeply miss them. We visit them most nights to tuck them in (we switch off who goes home), and then come back to sleep at the hospital. We are INCREDIBLY blessed to have enough support that Derek and I can do this, together.

I met two other heart moms today, and I really can’t express how important those relationships are to me. I need those women in my life. One mom I met tonight is the mother of the sweet one who moved our surgery date. You could literally see the strength in her eyes, and I already feel so blessed to have met her. Heart moms are some of the fiercest people I know, and I feel stronger every time I am with them.

We also met a couple other patients on the floor, and we are all buddies now! One other little girl just had her Fontan on the 20th. They are from overseas, and came to TCH specifically for this surgery. I love that Sunley will know other kids with similar hearts (although we have yet to meet one with Sunley’s specific anatomy!).

This time of year brings back so many memories of my pregnancy with her, and our introduction to heart parent life. The photos below are of the Houston sunset, exactly four years apart on her birthday. Regardless of everything, there is evening and there is morning.

Happy birthday, Sunley Summit. I would choose you and your spunky biker heart over and over and over again.

Post-op Day Four

Today was a new day, thanks to Toradol. This blog post could be an ad for the stuff — We’ve been wanting to add it since surgery, but her platelet count was too low until late yesterday. And boy are we happy it’s on board now! We’ve been waiting for this corner turn for what feels like much longer than 4 days. Sunley woke up and said “I haven’t had breakfast!” and we knew it was gonna be better. She still isn’t eating enough, and has lost a little weight, but her demeanor is steadily getting better and better. Look at this smile she gave us this afternoon:

Sunley has 2 chest tubes left in her. The right one is still producing quite a bit, but the left one looks just about done. Surgery prefers to wait and pull them both at the same time, since removal is definitely traumatic, but if the right continues for a while, then we will probably decide to pull the left one before the right. Most of Sunley’s pain is coming from the left chest tube, according to her, “in my heart and in my back.” Massaging under her shoulder blade seems to help a little. The tubes are also sewn really tightly at the entry point, which is obviously necessary with a toddler, but it also makes dressing changes on them pretty painful (you have to slide thin patches of gauze underneath the tube, while trying not to move it). And of course stripping (emptying) the tubes seems to hurt maybe even more than the left tube placement. 

Sunley went on 3 walks today, and rode a tricycle around the halls. It was adorable, and she actually WANTED to get up and ride the trike! She was way more talkative with Derek and me, but of course still totally silent around the staff. Girl’s got major trust issues right now, and no one blames her for that! Tonight, while our nurse was stripping a tube, Sunley got so frustrated and looked at me and said “She’s hurting me!” It seems like no matter how much we explain it, the pain for gain concept is a lot for a 3 year old.

We tried to come off of oxygen today, but I really think that won’t be successful until we get the tubes out. The rate at which the tube will slow down is totally unpredictable, but I have said over and over, “We don’t care how long they stay in — the priority is that we don’t have to put them back!”  and everyone agrees, of course. 

We’ve added a bunch of lasix, tummy meds, and unfortunately Potassium. Several of the meds taste pretty bad, but nothing compares to potassium. She has thrown up twice after taking it. Because of all of this, we have spent hours convincing her to take any meds. How do you get a traumatized 3 year old to take oral medication when they are just flat out refusing? Wish us luck. Every part of recovery has its own unique challenges, and taking meds will probably remain a challenge for a while. Fortunately, Toradol and lasix, arguably the most important ones in her regimen right now, are administered via IV.

I have more thoughts, enough feelings to fill a book, but I’m gonna cap the update here tonight. I’m sure recovery will start moving at a faster pace now!