 |
| Playing in the toy room. A shell of herself. |
(Catching up)
It's been over a week since we handed Reya over to her surgeon. A long week. A week full of the ups and downs of any long admission. It seems she is finally on the road to recovery, or so we thought.
Since my last post, there have certainly been a lot of down moments. As I was finishing up that post, we had decided we needed to reintubate. Shortly afterwards, the breathing tube was put back in. The next day, Thursday, was a quiet day of rest, allowing her to heal from having to be reintubated. Chris and I went in after rush hour, stayed through lunch, and went home before rush hour. We had been at the hospital really late the night before, she was stable with no chance of anything exciting happening (good or bad), and heavily sedated. It was like watching the grass grow. To be useful, I swapped out her gtube button. Our nurse, Rebecca, was impressed. She told me that they needed a special training to be permitted to swap out gtubes and that she had never done it. GI had taught me at our last visit. I explained to her it was kind of like changing an earring. You prep the new button, take the old button out, pop the new button in, and blow up the balloon with sterile water. It takes about 5 minutes, if that. However, it is much easier and much more pleasant to do on a sedated child. At this point, we had watched two kids come and go in the room next door. It was kind of discouraging, but I kept telling myself, they were a lot older than Reya, making the recovery process much faster. We got home form the hospital around 3:00. We were both out of sorts and didn't know what to do. I went to the grocery store so that I could cook us dinner at home. We ate dinner in front of the TV, watching Jeopardy, and reminisced about the days before kids. After dinner, we called to check in with our nurse, Molly, to see how things were going.
 |
| Sleeping peacefully. |
The day after that, Friday, we spent most of the day waiting to extubate. Danielle, from the first day post-op, was our nurse again. Kayla, one of our favorite nurses from Mireya's first two surgeries, was next door. I decided to run in that morning so I could get there bright and early. I ran with a backpack, and went to the gym across the street to shower before heading upstairs. I had done this the day after surgery, too. It saves me time and kills two birds with one stone. I was able to get there in time for rounds and did not have to wait for rush hour to be over. Chris came in after rush hour, especially knowing I was there already. As I went up the elevator, I realized another woman in the elevator was a person I had been communicating with through the BCH Facebook page. Her daughter was the newest patient in the room next to us. We chatted a bit, then made our way in to the unit. Shortly after I got there, it was time to pull the first chest tube. I was relieved this was going to happen while she was sleeping... chest tubes are super painful and one of the things I was dreading most about this surgery. This is where things got interesting. As they were pulling it out, some bloody tissue came with it. The nurses, while not frazzled about it, were not happy. They said it looked vascular and was something called omentum. I had never heard of this before, but Danielle explained they would need to get a member of the surgical team to clean it up. The surgeon arrived a few minutes later and we chatted. He gave me a lesson on omentum. It is actually an organ, and it is not 100% clear what it does, but they suspect it has a part in healing and preventing against infection. He told me that they often find extra omentum in patients who have had appendicitis but did not have an appendectomy. He said that sometimes when they pull chest tubes, the omentum gets attached to the chest tube and it comes out. It made sense to me that Reya would have omentum, being this was her third open heart surgery and a lot of healing had happened in her tiny little body. Anyway, he cut it off, and stitched it up and said it would be like it never even happened. Chris arrived shortly after that. Extubation was set to happen after rounds. We hung out a bit, then decided to go to lunch while waiting for extubation. It didn't actually happen until about 4PM. It went fine, and the plan was to continue to keep her mostly sedated overnight, so we went home that night. On our way home, we decided to stop at Tango for a drink to celebrate the day's progress. It felt like we were gaining momentum.
 |
| Extubated, again. |
At first, after the second extubation, she seemed to do great. When I called Saturday morning, the nurse said we were ready to go out to the floor. I was really surprised. Well, once again she had other plans. Right before I spoke to the nurse, Maura, she had given her Tylenol by mouth. She aspirated and choked, causing her to vomit. She desatted, and never really recovered, getting worse and worse as the day went on. As Chris put it, it was a solidly mediocre day. She had made it through extubation, but only just marginally. Her breathing got worse and worse as the day went on, and when we came back from dinner, they had decided she had declined enough that she needed some positive pressure airflow, so they put her on bipap while we were at dinner. When we left, she had looked pretty bad. While we were at dinner, the nurse called to tell us they had put her on bipap. Her lungs had collapsed and she was having trouble inflating them all the way. Carbon dioxide had built up, making it an uphill battle. When we got back, we were amazed at the improvement. She was alert and reasonably calm. I decided to spend the night. Brenna was our nurse, and she was good. Reya spent a solid 12 hours on bipap before they switched it to cpap on Sunday. From there, we were able to work down from 10L high flow down to 3L low flow. Finally, by Monday, 6 days post op, we were down to 2L and ready to go out to the floor.
 |
| Not feeling so great |
 |
| Struggling |
 |
| Bipap |
 |
 |
| Sitting with Dada |
 |
| Sitting with Mama |
When we came in Monday morning, 6 days post-op, our nurse, KK, was giving her a much needed bath. She was a shell of herself, unrecognizable. She had lost 2lbs, and at 18 lbs, she did not have much to lose. She had dark circles under her eyes and was so weak she could barely hold her head up. But this was better than Saturday, when she had the muscle tone of a 16lb newborn. K.K. said she had been in great spirits that morning and that we would definitely be going to the floor. While we waited, the feeding team came by and we were finally able to try and give her some food by mouth. She had been asking since coming off of bipap. She was so excited to see food, that she lunged for the pudding the feeding specialist brought her and practically fell over. Unfortunately, it did not go that great. She sputtered, coughed, and eventually vomited. She was declared NPO (Nothing per oral). Fortunately, we still had the gtube, so we were able to start feeding her and getting some of that weight back on her.
 |
| Off of Bipap / Cpap |
 |
| Music Therapy |
 |
| Music therapy with our friend James |
 |
| Pudding |
We waited most of the day for a room to be ready and when it finally was, we learned one of our old nurses had us. It was Annie. Annie is a funny story. We had Annie during our first admission when she was training with one our favorite nurses, Stephanie. She was terrible. Her inexperience was clear and there was a lot for her to learn. We often got her at night, and she was NOT what I like to call "a ninja nurse." She always managed to wake Reya up. She also had a thing for giving babies baths at 4AM. We seemed to get her a lot, but we also got to watch her grow as a nurse. She's actually pretty good now, but I was happy she was not our night nurse.
The biggest low of this admission, other than failing her first extubation, is exactly what we feared would happen. It was pretty clear after the aspiration incident on Saturday and the feeding trial on Monday - her vocal cords had once again been compromised. The last collateral that needed to be unifocalized was higher up, closer to her neck, and therefore closer to her vocal cords, making it more likely. We spent much of the time in the CICU asking for them to scope her so that we could know for sure. It was not on their priority list, so it did not happen until we went to the floor and even then not until Thursday, but more on that in the next post. As we transitioned to the floor, there were a lot of questions. How long would we be there? With the feeding issues, this was really uncertain. Then there was the oxygen, which she was clearly having a hard time weaning from. And then her overall weakness... It felt like she was going to be there forever and I started rethinking long term plans, especially for marathon weekend. We had already postponed Hope's return until Friday. It became clear it was going to be a day-by-day thing and that we were just going to have to wait.
No comments:
Post a Comment