Surgery Hangover

Surgery hangover

Written Apr 1, 2012 9:33am by Amber Gannon Medina

I forgot how difficult Mira's recovery period is. I forgot how everything that happened before crashes down on me, and the aftermath is almost as difficult as the surgeries. Maybe even more.

Yesterday was really rough. We went to the hospital tired and happy to see Mira and we left discouraged and feeling helpless. For instance, yesterday Mira didn't really want to be touched-by anyone. And when I talked she tried to wake up and would get really agitated (which sometimes necessitates drugs to calm her down). So you feel like you are doing more bad than good being there. Yet, the nurse said she calmed down better and faster when we were there to talk to her.....It's just so difficult to not be able to do anything for her, and to see her so sedated and when she is not sedated, to see her in pain. Of course, the worst part is not being able to hold her again....I end up pacing the room (and there is not a lot of room to pace) and feeling like I need to "break out". 

Before Mira and this experience, I had never really experienced serious stress. My parents had divorced, I had moved, I had gotten married-I had hit a few of those experiences on the stress continuum. However, for me personally none of those have compared to having to go through an open heart surgery with your infant daughter. I've found myself in new and uncharted territory, and my mind and body are finding new ways to survive it. 

For one, my mind doesn't seem to work "right". My thoughts either seem to go through this long conveyor belt-factory line before they pop out completely jumbled and slightly incoherent. Or they come out of my brain before I've had a chance to review and filter them. Either way, I sound confusing and out of it and I am sure if I was conscious, I would feel embarrassed.

I am finding that "being out of it" may be a useful tool in getting through this. I've always considered myself a somewhat grounded person and so finding myself floating through these days in a bubbly cocoon is somewhat disconcerting. Yet, I have the feeling that it is where I need to be to stay sane and to find relief. It is warm and safe there, and when I am in there I mindlessly play bejewled and let the kitchen dishes pile up. 

When I have to come out of that bubble its HARD. Even just having a conversation with a nurse or with a friend takes so much energy and brain power that I feel like I could take a 5 hour nap after. In fact, I feel like I could sleep an entire day and still feel tired. 

And so this exhaustion may play a role in why Mira's post surgery recuperation is so difficult for me. Going through this post op recovery and rehabilitation seems more daunting to me than the first time around. Knowing what I am in for makes it seem that much longer and difficult and sad. Really, if I knew how long and tiring it would be the first time around, I don't know if I could have gotten through it (so thank goodness I didn't!).

Each one of these is a hurdle we overcame the first time-and it was long and stressful and bumpy. And we have to go through it all over again.

1. Closing her chest (it took multiple attempts and a final very scary nail biting successful attempt before Mira's chest was closed the first time).

2. Removing her chest tubes. She currently has 4 chest tubes, and they are BIG. The nurses have told us that these are one of the most painful parts of recuperation. When Mira coughs or moves or even breathes, she feels them in her tummy and chest. The first time around they were in a very very long time. First she had horrible drainage. Then she had pleural effusions that forced the doctors to put tubes back in that had already been taken out.

3. EXTUBATION! Ugh, that was a tough one the first time around. It was months before the doctors even tried to extubate her, and the first attempt was a bit of a disaster. Yesterday, they warned us she was at extremely high vent settings and her lungs were pretty sick. We're in it for the long haul.

4. Weaning. Right now Mira is on A LOT of sedation. The handful I can think of right now are: Versed, fentanyl, morphine, ketamine, Ativan, dex, valium. Yikes. The funny thing is, Mira is still feisty on all those meds-she gets mad when they suction her and she wiggles and tries to wake up at various times throughout the day. I think an adult on all of those would be knocked out, but Mira doesn't want to sleep away the days. The weaning process the first time around was long and difficult. Methadone is not a friendly drug, and so using that to wean her off morphine is rough going.

Even with my poor thought processing (in fact, I feel like this post makes no sense) and feeling somewhat discouraged-First and foremost, I am so grateful and relieved Mira is alive and doing relatively well! Of course I realize all those things are a blessing because it means she is alive and struggling to get better and get out of this hospital. She is alive! So every step we take in this recovery, I will remember its towards leaving this hospital and not towards another surgery.