Remember back to English class when you learned about foreshadowing and how it will affect the rest of the story? For some foreshadowing has always been one of my favorite pieces of story structure. In college I wrote a paper on the numerous, unnoticed foreshadowing events in the movie Back to the Future (it was a riveting A+ piece of work). Yet, sometimes foreshadowing is so blatant it does not advance the storyline but rather tells the end too soon.
If anybody were videotaping JD’s pre-op on Thursday with the nurse practitioner (NP) then they would have seen blatant foreshadowing at it’s best.
During the pre-op, the nurse practitioner has the daunting task of pointing out all the small percentages possible risks for surgery. Very similar to how we handled those conversations while JD in the NICU I politely put my fingers in my ears and hummed to myself until she moved on. We are not being naive but rather keeping our brains clean of unnecessary worry. In the medically complex world that is JD there are a lot of “small chance” percentages in everyday life. If we listened to each potential challenge we would spend more time focused on possible negatives rather than enjoying the actual positives.
So as the NP was explaining the 1% chance of this or 10% chance of that I barely listened. Yet, one risk stuck out, one risk grabbed my attention, and one risk made me ask questions.
“During surgery there is a chance the thoracic duct could get nicked or stressed in which case he would have Chylous effusions where the fat drains into the chest. If this occurs he would have to be on a specialized, low fat/fat-free formula diet until the body heals itself. Another risk . . . “ NP said so matter-of-factly.
“Whoa, whoa wait, can we go back and talk more about that duct nicking thing?” I said with a bit of an edge.
NP: “Oh, of course. We do not see it very often but it is possible during surgery. It should not affect recovery but it is a risk we need to tell you about.
Me: “How often do you see the fat sacs nicked?” (I could not get over this idea of nicked fat sacs)
NP: “Welllllll . . . (big pause) we see it but not all the time. Without any data or support to backup my facts I would say about 5 -10% of the time.”
Me: “Oh, I thought you were going to say about 50% of the time.”
NP: “No, not that often. It really is very minor.”
“Yep, pretty sure that will happen to JD” (I thought quietly in my head).
Anytime we are given a “small chance” percentage we are slightly heighten in worry. Having a child with a less than 1% syndrome pretty much throws out all other percentages. Recently, I was talking to another mom who’s currently pregnant with #2 and whose first baby had a few “small chance” percentages complexities. We both agreed that we chuckle when doctors tell us “well it is a less x% chance of happening.” Guess what we have already encountered those “small chance” percentage so this gives us no comfort. I actually think I would have felt better had she said 50% of the time.
If you have not figured out where I am going with this I am a terrible at foreshadowing. Last night around 8pm the night nurse noticed his chest tube drainage appeared white and milky. When we told the nurse we had started his food about 12 hours prior she said “yep, we need to send this to the lab.” Blast! I knew it! Lab confirmed a heighten amount of triglycerides meaning yes that “small chance” percentage has taken over again.
This afternoon we slowly started JD on his detox cleanse – it’s not really a detox cleanse but cleanses are super hip right now and it just sounds cooler than specialized low-fat formula. As of this evening he is not a fan of this formula, we have yet to get through a half his normal feed without spitting up. Poor little man.
After pumping an extra full two weeks of milk and blending an extra full week of his smoothie for post surgery it will all stay in the freezer for now. For the next 6 week his diet will be a specialized formula to allow the body to heal itself. This will include at least 4 additional appointments after the 6 weeks on top of the other cardiac follow-ups. Good grief!
Per usual, this did not sit well at first but then realized of all the challenges we could/can encounter this is rather minor. The disappointing part is he will have to keep his chest tube in for a few more days until it has completely drained and it will extend our stay. We were looking to be home by Wednesday (which was already a week earlier than we planned) but we will keep him here until he is 100% ready to dominate the real world . . . then we might as to stay one more day just in case J
As for the rest of our checklist:
* Working on feeds with this new formula (not liking his celebrity cleanse)
* IV is out of his head
* Hoping to take the central line out of tomorrow
* BIG NEWS: dressing is off his incision and we have seen the first glance of his badass zipper scar.
* During the day we are testing no nasal cannula and he loved. With no oxygen help his saturation level was holding steady 96-100!!!
Overall, another stellar day for J-Doug. He is active, moving around, rolling around, kicking his legs, punching his arms, and enjoying being almost tube free. Once we get this cleanse under control he will be a whole new man. Looking forward to snuggling with him once his chest tube comes out in the next few days. Only 3 days post open heart surgery and this kid amazingly handsome!
|JD's crib is the place to be. Socks the Sock Monkey (from his godmother Lauren), Bravely the Lion (from the Rutlins) and DJ the Owl really spice up the party.|
|Chicks dig zipper scars and head band-aids|
|Agh, we just cannot get over how great he looks. Feeling on top of the world. Good as new.|
|Seriously, it's pretty awesome looking|
|"So we put our hands up like the ceiling can't hold us . . ."|