Running towards a Rainbow: Recovery is a long process

Playing in the toy room

If I know anything from my experiences as a heart mom and a runner, it's that recovery is a long process. It starts when you become less critical and are discharged to the floor from the CICU, but doesn't really pick up until you get home.

Sleeping peacefully in our new room

I was pretty surprised we were discharged to the floor the Monday after surgery. I really thought we'd be in the CICU one more day. Reya was so weak and seemed so fragile. She was a shell of herself and almost unrecognizable. But she no longer needed the one on one care the CICU provides. We would be with her 24/7 and could perform much of what she needed ourselves. We got a decent room - a large shared room, on the window side.

Watching "beast"

When we came out of CICU, Reya looked really bad, as I stated in my previous post. She was down two pounds. You could see every bone in her body, especially her shoulder blades. She had dark circles under her eyes. She was weak and could barely sit up for 30 seconds, and definitely couldn't stand. She seemed so fragile, I was afraid to hold her. On Thursday, a nurse practitioner walked in that I had never met. Susan. I really grew to like her. She treated me like a peer with respect for the knowledge I had on my child. She looked at Reya and said something like "She does not look very good at all" and asked me to see a photo of her well. I showed her a picture from the night before surgery and she gasped and her eyes welled up. Dr Friedman had also stated how bad she looked earlier in the week.

Still really skinny, but a little more color in her face and less darkness under her eyes

The one thing we were most worried about was her vocal cord. She had been listed as NPO, meaning we were not allowed to feed her by mouth. She was to receive all feeds by gtube. This was really hard because we had hit her really hard with diuretics to get all the fluid off of her, especially what was in her lungs. She was all dried out and so thirsty, begging for a drink. We learned we could not drink in front of her because when we told her she could not have our drinks she dissolved. Some of the first words she said when she could finally speak again on day 6, were "cup", "milk", etc. Having her vocal cords scoped was the first thing we asked about when we got to the floor. The Nurse Practioner that day rubbed us the wrong way when she shot it down immediately, not taking our expertise in our daughter into account, which is unusual at BCH. She told us it was a matter of wait and see and the scope was not necessary, but as we saw it, it would give us answers and help us make a plan to proceed. The next day, Tuesday, we were able to convince the NP on duty to ask Dr Baird, her surgeon, if we could do a scope. Dr Friedman, her cardiologist was on board. Dr Baird came by on Wednesday afternoon to check on her. We discussed the vocal cord and he was positive she'd be a candidate for the vocal cord medialization injection and that we should definitely have her scoped so that we could move forward. This was exciting news! Finally, we were able to get a scope Thursday. We had been asking for a week. The scope confirmed our fears and more. Both cords were compromised. One was fully paralyzed, the other was not fully functional. Her epiglottis was also not fully closing. All of these things were problematic, and made her not a candidate for the injection, at least for now. That was a real bummer.

Watching "Beast" again

Our stay on 8 East was mostly productive. It helped a lot that we had the same nurse for three days. Day time is when most things happen, and when you have the same nurse, is it even easier to be productive, as you don't have to repeat yourself when the nurse comes in the next day. Kayla was our nurse Tuesday, Wednesday, and Thursday. She was one of our very first nurses when Hope came to the floor many moons ago. She was training when we had her with Hope, but we liked her then too. Reya was not as wary of her as she was of a lot of people who came in the room, as she had grown familiar with her and trusted her, at least minimally. For two of the nights, we had the same nurse as well, Katie. She was pretty good and possessed ninja skills, important for a night nurse. Then we had another Katie who was also good.

Sleeping warrior

Looking so grown up after all she's been through

Motoring

Playing in our room

Shopping

The question always is whether you're safe to go home. This is not something the doctors and nurses always get right either. Sometimes you get sent home, only to bounce back a day or two later. We experienced that when Reya was a newborn. There were moments when I thought we were going to be there forever this admission. It took her 8 days to come off of oxygen completely. She was weak and her sats were lower than I expected them to be. I was feeling pretty certain we would still be there on marathon Monday. Both Chris and I were targeting Tuesday, April 17 as discharge day. But everything can change in a minute. On Thursday, a couple of things happened that made me think we might be getting out of there sooner rather than later. We have been around the block enough times that you can sense when discharge is near, even when it doesn't seem your child is well enough to go home. First, the NP, Susan, asked me what we were thinking in terms of discharge. It caught me off guard that she was asking my opinion on this matter since I am not a medical professional, but again, we have a lot of experience, and we know our daughter well. I told her it really depended on ORL and what they saw in the scope. I knew that if she were a candidate for the injection, it would be easiest to wait it out and have it done during this admission. We would be prioritized and wouldn't have to deal with insurance approval. Dr Baird wanted it done ASAP if she were a candidate. I said if she were not a candidate, I thought home was the best option because with each day that passed, Reya was more and more miserable and more and more depressed. She would not let anyone work with her, did not want to move around, did not want to play. She was on the same page as I was. The next thing that happened was Lisa Perry, the case manager on the cardiac step-down unit walked in. Everyone likes to have Lisa visit their room. She only ever comes into your room if discharge is imminent. She said she wanted to make sure she had everything lined up in case discharge were to happen over the weekend. We were going home on formula, and since it had been medically prescribed, she had to order it through our medical supply company, New England Home Therapies. All this had to be done before the weekend, especially since it was a holiday weekend and a lot of people across MA would not be working on Monday, Patriot's Day. Lisa is incredibly good at her job. She is on top of everything and doesn't want any one to get stuck in the hospital for a couple extra days because she didn't take care of something.

Starting to feel better, but still no smiles

I decided to leave on Thursday night, leaving Chris to stay with her. I wanted to go to the SRR pre-marathon pasta party at Casey's, because it was still marathon weekend, I was running with a club number, and life goes on. I had also decided to go in to work on Friday. I really needed a change of scenery and thought it would do me good to go to work. By the time I left on Thursday, we had all made a plan. We would do a swallow study Friday afternoon. If ORL thought they could perform the injection within the next few days, we would remain inpatient until that happened. If they could not, we would likely go home late on Friday. So I went off to Casey's and then home. It was odd being at Casey's and I definitely shed a few tears when friends asked me how we were doing. Then I went home to an empty house, the first time I've slept alone in my house in 9 years. My emotions finally got the best of me and there were a lot of tears. Same was true at work - each time someone asked how we were doing, I teared up. But it was good to be there. I was texting back and forth with Chris. He had managed overnight, but he did not have a very good night. I was not in class yet when Dr Friedman came by, so Chris put him on speaker. The plan was the same. ORL had said no, so we would start the discharge proceedings after the swallow study. He would stop in to talk to us after the swallow study. I only stayed until lunch, and then I took off and went to the hospital.

Starting Thursday, Reya had become quite uncooperative. She only wanted to watch "Beast" on repeat or go for walks around the hospital. She was not interested in playing or engaging with anyone. She had a visit from pet therapy. She hated it, despite loving dogs outside of the hospital. She had refused to work with the physical therapist and the music therapist on Thursday. The PT was pretty used to this, but the Music Therapist, James, was pretty defeated. He said he could almost always get through to kids with music. We were set for the swallow study between 2-3 on Friday. We went down shortly after I arrived, so 2ish. It is not overly surprising that she refused to cooperate. They were able to get about 4 swallows out of her. It was enough to clear her to have purees and yogurt, but nothing else. This unwillingness to cooperate was her ticket home. She was miserable.

Therapy dog Zumi

Dr Friedman came by, as did Susan, the NP. Reya's numbers were not perfect. They would have liked to have seen less fluid in her lungs. But there was nothing they were doing at the hospital that we couldn't do at home, other than a chest x-ray every 48 hours. So we all agreed she would be better off at home, where she could recuperate in her own environment. Dr Friedman warned us we might not stay home and went over what we should look for. He told us that if we were first timers they would keep us, but they trusted we knew what to look for and what to do. Susan went off to prepare the papers. Lisa Perry came by again to tell us our order would come on Monday and she had asked nursing to send us home with enough Pediasure to get us through the weekend. We also discussed the Visiting Nurse again, which after thinking it over, I realized it was a good idea. Lisa encouraged us to have her come at least once, stating if things got better we could discontinue it.

Discharge!

The ride home was not overly smooth. She fussed for the first half, then somewhere near Harvard Square, she vomited, aspirating on the vomit. We took her out, let her finish, and cleaned her and her car seat up. The rest of the ride, we were on edge. She was still pretty fussy. I expected her to be pretty excited to get home, especially since Hope was finally home, but she was so weak, sad and probably still in pain, she only perked up a little. She did walk around a little and played with some toys. The next 24 hours, we were all on edge. Her sleep was noisy due to the stridor caused by her vocal cord injury. When she cried, it was so weak that we couldn't really hear it in our room. I got up multiple times to check on her. I checked her breathing - it was still pretty heavy. In the morning, she was not much improved. I considered calling the pediatrician and having them check her. I even considered taking her back to the hospital. It was a rough 24 hours. But around dinner, she was smiling again, and it seemed she was turning the corner. Saturday night was better.

A smile!

Home! Watching “Beast” again

Sunday morning, Chris' brother and girlfriend came for brunch. His parents were coming for dinner and we thought it better to not overwhelm her with everyone at once. It was nice. Both Rob and Tiana checked her out. Rob is a firefighter and EMT and Tiana is a home health aide, so both have medical expertise and know what to look for. Mireya was definitely feeling better and was happy to see them. Everyone loves Uncle Robbie :) She was much improved by Sunday, but it was still reassuring to have them look at her. That afternoon, the visiting nurse came to check her out and get a baseline. I love this service. It is just another person to lay eyes on your child and offer you reassurance that everything is ok. We had a visiting nurse from when Reya was 3 months until she was 11 months. I learned so much from her nurse, Jayme, and her colleague, Tara, so I knew having them back was a good thing for us. Reya was not doing great, but she was doing much better. The nurse made a plan to come back at the end of the week. She told me the order was for 2-3 visits a week. When we had the visiting nurse the first time, she only came once a week. This is how borderline Reya was in going home. We saw a ton of improvement as the day went by. She was looking better and better with each hour. By the time Chris' parents got there. She was in pretty good spirits and clearly feeling better, but still not perfect. They went off to dinner and I put her to bed shortly thereafter.

There she is!

The next week was mostly quiet recovery. Monday was the marathon. Tuesday- Friday Hope went to school, so it was just me and Reya resting at home. The weather was not real good, so we mostly stayed in. We saw her pediatrician on Wednesday. She thought she looked good. We discussed everything Reya had been through. I told her Reya had vomited and had a pretty massive blow-out the night before. We decided to keep an eye on it. The nurse came on Friday, and we also discussed the vomiting. I spoke to Dr Mahony (our pediatrician) on the phone that afternoon. Again, we decided to keep an eye on it. We thought she potentially had enterovirus, which can cause GI symptoms as well as upper respiratory stuff. Crazy, because we had not gone anywhere.

"Eating" on the go

Cute little backpack (she's not a fan)

By the end of the week, it was clear she was not ready to go back to daycare. Not only was she not ready, but we had follow-ups scheduled for 3 out of the 5 days. The vomiting continued. In fact, she is still vomiting, almost 4 weeks post-op. Only once a day and without the diarrhea. It's a mystery as to what is causing it. I've wracked my brain trying to figure it out. There is no consistent pattern, though it seems to mostly be in the middle of the night due top coughing or in the morning. My first thought was that we were running the feed too fast. I slowed it down, and that seemed to help at first, but then it restarted. Things we've discussed that it could be: reflux, intolerance to the high-octane formula (30cal per ounce, which is a lot!), being too full, congestion....
I don't think it is reflux, mostly due to it not being consistent and there being no other symptoms.
It could be intolerance, but she handled it fine for the first week she was on it.
Congestion is definitely a possibility - we've all had colds.
My current thinking it that she is getting too full, getting a full feed on the heels of her continuous feed. She gets 400mLs (about 13oz) continuous feeds at night, and three 110mL bolus feeds through the day. It has started to happen almost every morning. So I've decided to back off on the morning feed and add volume to the afternoon and evening feeds to see if that helps her.
I've also been thinking back to previous open heart surgeries. After each one, both of our kids vomited a lot. For a couple of months post-op. So it could just be heart surgery.
None of her doctors seem overly concerned, so while it is stressful and confusing, I'm trying not to be too concerned. She does not seem overly bothered by it either.

Last week we had our first visit with Dr Hseu in the voice clinic. She was very kind. She is a young doctor and is a specialist in vocal cord injury. She evaluated Reya and scoped her again. She has right vocal cord paralysis. The left, which was the previously damaged cord, has shown some improvement. This improvement means she is now a candidate for the injection. She wanted to prioritize her, and we've scheduled it for May 23rd, with the hope of a cancellation. It could be worse, we could have to wait 3 months. She will scope her one more time before the procedure, to be sure the left has recovered enough to make it safe. The injection is Restylane, so Botox, essentially. It fills in the vocal cord, allowing for safe swallowing. It is not permanent, but the idea is that the vocal cord will have healed by the time the body resorbs the Restylane. If not, they will perform another injection. This gives us a ton of hope because her not being allowed to eat / drink has been really hard. Almost as hard as having a baby who does not want to eat.

Feeling better at ORL's voice clinic

Getting familiar with the chair

On Wednesday we followed up with Dr Friedman. He was mostly pleased with her progress and cleared her to go back to daycare on Monday. Her chest xray still showed some fluid, but there was improvement. Her weight was up, her sats and color were also better. She is currently satting in the high 80s- low 90s. Personally, I would have liked to have seen them higher with the closure of the vsd, but the fenestration is so big that there is still a fair amount of communication between the chambers. Her incision looked good to him, and he snipped a bit of suture that was being pushed out. He was happy to see her back to her impish self, walking all around the exam room. She was happy to see him, which was also improvement - she didn't even want him in the room on the last day of our admission.

Thursday, we had our follow-up with the cardiac surgery team. This is a virtual visit, done through an app similar to FaceTime or Skype. Mainly they want to check the incision and go over any precautions. She said by next week, she'd be clear to be submerged in the bath again. Sternal precautions for 3 more weeks (this means she can not be picked up under the arms, and is really hard at this age!)

The rest of the week, we went for walks, rested, and recovered. The timing was good for me. I needed to recover from the marathon, so I guess we've kind of been recovering together. We are all getting over colds, which hit me like a ton of bricks late week. Each day is a little better for both of us, though it certainly has not been smooth. It has been pretty stressful and at times, I have been pretty down in the dumps over it. Tomorrow we go back to school for two half days, then if that goes well, we will do full days the rest of the week. Then back to normal. Or as normal as one can be 4 weeks post open heart surgery and 2 weeks post monsoon marathon. This is the final stretch and then it will be summer. We are hoping for a quiet, restful summer, recovering from everything we have gone through in the last 4 years.