Just Say No!

Just Say NO!

Written Jan 19, 2012 10:24am by Amber Gannon Medina

If anyone wants to use our hospital room as a meeting place for a "Just Say No" to drugs workshop, just let me know....Do they even have Just Say No Meetings anymore, or am I aging myself there? I remember the good ol 80's and sitting in our elementary school library watching a cop teach us about peer pressure and drugs....

Mira's drug withdrawal has/is been really rough on her. And us. I keep trying to tell myself my daughter is teething or she has colic...So when she wakes up every 10 minutes crying and retching and feeling clammy and looking miserable, I try to comfort her in a way I know many mothers of healthy kids have to do when they are sick. 

Before this experience I was such an anti drug fanatic. Headache? NO aspirin for me, thank you very much. Feeling depressed? I will try SAM-e before prozac! Mira's birth? Totally drug free! However, when Mira is miserable and she is throwing up and can't sleep and I know its because her body is craving the drugs it is used to....I turn into the pusher man! Can't Mira have some Morphine, I ask the nurses? I know the Chloral works really well for her, what about that? I almost don't recognize myself, but I have a little drug addict here, and I just want her to be comfortable. I don't want her to feel any more pain than she has to.....

This little stretch of time is feeling bittersweet. Besides the drug withdrawal, Mira is doing so well! Sometimes it is difficult to remember that she is sick (besides the fact that when she gets mad or upset and her heart rate goes up to 200, the nurses mention that she could arrest if "this" keeps up....). Mira is learning to sit up and her head strength is really improving! We are holding Mira every day and she has started to really like her swing! She is working on learning how to eat (this part will be a long long road, but just that she is well enough to start this therapy is good news!) and is tolerating her feeds well.

I say this is all bittersweet because we know what's coming next....Another surgery. Groan. I keep looking at Mira-no tubes or vent-and I know that in about another month, she will be going in for another open heart surgery. A surgery that will require more recuperation and healing...A surgery that will start this nightmare we've been through all over again. 

This next surgery that Mira will go through is called a Glenn. Here is a short explanation of it from Wikipedia-

The first stage, also called a Bidirectional Glenn procedure or Hemi-Fontan (see also Kawashima procedure), involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply (e.g. a shunt created during a Norwood procedure, a patent ductus arteriosus, etc.). The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart.

At this point, patients are no longer in that delicate balance, and the single ventricle is doing much less work. They usually can grow adequately, and are less fragile. However, they still have marked hypoxia (because of the IVC blood that is not fed into the lungs to be oxygenated). Therefore most patients are referred for another surgery.

Did you see the part about no longer being in a delicate balance? That is what I am holding on to. In other words, after this surgery (if all goes as planned, fingers crossed!) Mira will be able to come home. What a catch 22.....Mira needs to go through another surgery, more pain and tremendous fear on my part, MORE drugs.... in order to get better and come home. I can't tell you how many times I've wished that the healing she is doing now was the end of the road. That once she gets better, that's it-its all over and she can come come and we can forget about all of this...That's most likely never going to happen. The forgetting part that is.....

Another positive part of this 2nd surgery I am focusing on is that the doctors and nurses tell us that NORMALLY the Glenn is much easier on kids. The surgery itself is shorter and the recuperation is much easier (MOST kids come back from the OR extubated and with their chests closed). I say NORMALLY and MOST because we all know that Mira likes to surprise us and do things her own way-so there is no way to predict how things will play out in her case.

Again, Mira is teaching me to force myself into living in the moment...When I am with her I can't think about what is going to happen tomorrow or in a month-I have to be with her right then and there. Even with that in mind, I feel like I have to fight having our time together shadowed by what is coming. So then my mantra always seems to work-If MIRA can do it, then so can I!