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!

Sunley's First Day As a Four Year Old

Today was a great day, overall. We played in the playroom with child life, and went on multiple walks. Sunley’s demeanor is improving in just tiny bits each day. She loves doing PT, and the PT and Child Life staff is seriously fantastic. We absolutely love her team on this floor — they are so friendly, and explain everything thoroughly, and always ask us what we think and if we have questions. 

We are trying to convince Sunley to take off some of the stickers and bandaids she no longer needs, but she has so much fear about that, so we are letting her decide that. I soaked her feet in some warm water and was trying to massage her bandaid off from where her ankle IV was, but she didn’t fall for it and that’s ok for now.

I forgot to ask what Sunley’s BUN was today, but I know they are still cautious to give her too much lasix/diuril, so I don’t think it’s improved. However, her right chest tube output only SLIGHTLY decreased this morning, and they were really hoping for a bigger jump. So they decided to try just one day of upping her lasix, and revisiting the issue tomorrow morning.

We pulled the left chest tube (Sunley calls it her noodle) today, so we are down to only one now (she had three after surgery)! Pulling the “noodle” was pretty traumatic, but I’m so glad that we made that decision. I forgot how LONG they are. I could not believe how much tube was in there, looped around. No wonder it was hurting her so much!

Obviously, it is not funny at all when your child is in pain, but her phrase of choice while she was crying was, “Not the noodle! Not the noodle!” and I felt super guilty for holding back a smile under my mask. She’s just so cute, even when she’s mad. Don’t get me wrong — it was still terrible to see her in pain. But at least it was absolutely the means to an end, and that tube was her only source of pain the last few days.

Her saturations have been noticeably higher since we pulled the noodle, and I’m starting to let myself believe that for the first time ever, she is actually going to reach her saturation goals after surgery.

In PT today, she was finally talking to the therapists. They set up an obstacle course for her with some stairs, and asked her if she wanted the easy version or the hard version. She immediately replied, “Well, I’m four now, so we should do the hard one.” By the end of the session, her legs were pretty wobbly and tired, and she said, “OK, I’m outta here!” She rode a bigger bike today, and all the way back to our room, she was talking Hannah’s (therapist) ear off. “You can come to our house and sleep in my mom’s room. And we can have a slumber party and have popcorn and watch movies! You can totally come.” She is also going on and on about having Pho when we get out. She’s on a fluid restriction, so we’ll have to be careful and measure it out, but we are definitely going to make that happen!

Other than Hannah and sometimes Denzel, and her playroom friend Kaylee (the physical therapists and child life specialist) she really hasn’t spoken to the staff here. You can see her guard go up with anyone in scrubs. I’m so happy for her progress, but even what we have right now is such a muted version of the usual Sunley, and I’m so anxious to get her back completely. 

As I’m typing this, Sunley starting singing “Grow Flower,” a lullaby I made up for the kids. And I’m realizing this is the first time she has sung since surgery. What a special moment.

We have started forming bonds with other patients on our floor, and Sunley gave them two of her birthday balloons. They are beautiful little girls, and one of them just had her Fontan as well. It’s amazing to come here, and suddenly having a single ventricle heart isn’t uncommon at all. I had coffee with a beautiful new heart mom from Colombia, and it was so wonderful. It’s hard to explain how revitalizing time like that can be for my soul. We also got another visit from one of our favorites, Dr. Schlingmann, who always makes Sunley a priority when we are here. He even brought her a birthday present. Sunley is still pretty grumpy around doctors, but deep down she loves him as much as we do!

God is present everywhere, I know, but it is just so easy to feel with Him here. I always crave that focus and stillness found in the chaos of hospital walls. It really is impossible to actually explain.

PS- We just checked her noodle output, and it’s too early to really call it, but it looks considerably lower! Maybe just a day or two left with that. 

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.