Monday, December 29, 2014
Sunday, December 21, 2014
Sunday, December 14, 2014
Wednesday, December 10, 2014
Sunday, December 7, 2014
Friday, December 5, 2014
Abby has had a pretty good past 48 hours - though she is still intubated and sedated. A common side-effect of surgery is fluid accumulation and retention, which Abby has been dealing with in spades. Her poor little belly has been puffed up to seemingly twice its normal size, which is putting pressure on her lungs and causing them to work even less efficiently. Before they can talk about attempting extubation again, they have to get the fluid off. This is a very tricky process because of her hypertrophy. Normally they would just administer a ton of diuretics and call it a day, but diuretics increase Abby's outflow obstruction - so they have to try a little of this and a little of that and hope the fluid comes off.
Normally, I don't have trouble getting through the days here at the hospital. I hold Abby and watch shows on the iPad or play with Abby while she's in the crib. We do tummy time and work on bottle feeding, and generally the days go by pretty quickly. Such is not the case at the moment. You can only stare at your unresponsive child for so long before it gets really really depressing, and there are only so many things I can do in her room to stay distracted - as Jameson would say, I think I have found the end of the Internet. I understand why she needs to be in the state she is, but it still really sucks. Which brings us to some thoughts from Jameson about our past week:
"Embrace the Suck...."
By Jameson Locklear
In the immortal words of Col "Curse" Platt (say it fast, it'll make sense), "embrace the suck, gentlemen." Usually delivered after getting news like "you're going to be working 14-hour days until we deploy for four months" or "we're going home, but we have an exercise for 72 hours right when we get there." In other words, it was a challenge to move past your frustration, anger, and embrace the terrible-ness of the situation you're in. It was also a tacit acknowledgement that what he just asked us to do was ridiculous and annoying and shouldn't be happening, which sometimes was all that we needed. And that's where we are now.
Aberdeen is super-fluid overloaded right now. So much so, that her mother and I have been hesitant to really take pictures, because maybe we just don't want to remember it. They are slowly getting her to pee out the excess fluid, but it is a painfully awful waiting game. She just looks so uncomfortable laying there intubated and huge with fluid, but she's getting better. Last night was really good and I'm happy about that.
I wanted to write about last Friday's "code" and its effect on me. Bethany was kind enough to comply with my request.
When she "coded" last Friday I had just dropped off my brother at the airport and I received a call from Bethany's phone, but instead of her voice it was a nurse telling me that there had been an emergency and Bethany needed me to get there as soon as possible. At the time, I was an hour away and with little information. What's the best thing to do when you don't know what to do? Make more people concerned and worried. So, I started calling people. Once all of my calls were completed I started thinking.
At least it's over and she's not suffering anymore. Maybe we can go away for a while. I wish that I had gotten to teach Aberdeen how to throw a softball. I wish I had known how she spoke and what she was interested in. I'm so glad that I don't have to keep going to the hospital all of the time. Please don't let her die...but if she's going to, please don't just torture her for the next few months and then have it happen.
I was overwhelmed. I decided to call the hospital and they got me in touch with Bethany. She told me that Aberdeen was still alive and that they had done chest compressions. That was overwhelming as well. I finally got to the hospital and saw both Bethany and Aberdeen. Then the physical exhaustion set in. I don't know if I've been that tired ever.
This Monday we found out that the chest compressions separated her sternum and she had to be opened back up. I was so angry. I thought someone had missed something. Turns out they didn’t, but it was the second most difficult day for me of Aberdeen’s life.
Now, I'm doing alright. I'm embracing the suck. This is not fun. It doesn't matter that it could be worse, this is bad enough.
All I want is to find out what Aberdeen's favorite movie is and why. What food she likes the most. What she believes about herself and her experiences... how has all of this affected her? Someday.