First off, it's been way too long since my last update. I have to say, it's mainly because life has been so good and so normal for us that we've been soaking up every ounce of it and not paying attention to much else. It's exciting, to say the least.
As most of you know, it's been 2 years since Rosemary's Fontan take down. She had a catheterization last March to check her pressures and they looked great. She just visited her cardiologist on February 3, 2012 and her function looked great and all seemed well. O2 sats at 86%, very good numbers for her. Her doc did mention that her lower extremity pulses were weaker than her uppers, but that's to be expected with her growth and this current circulation of the Hemi-Fontan (or as we like to call it, the Hemi-Glenntan because of her unique anatomy to this last Fontan takedown).
Anywho, last week, her teacher emailed me to let me know that Rosemary seemed out of it. Not her usual self, a class leader if you will. The next day, I called the school nurse to let her know of the email and to ask her to go to the classroom to do a pulse ox check if that ever came up again. She told me that she would go down that morning just to check in, get a look at her and see how she was doing. Rosemary was participating in the classroom activities, doing an alphabet song, which the nurse said consisted of about 2 legs kicks and a wiggle. She noticed Rosie was particularly winded. She decided to take her to her office and pulse ox her. Her O2 sats were at 64%. Scary. She said she almost called 911. Within 5 minutes, they came back up to her normal range of 84%. She called me immediately to let me know what was going on and that if it happened again, she would be calling 911, I agreed.
I immediately called her cardiologist and he said he wanted to see her ASAP and that we should have her cathed again ASAP.
So here we are.
**PLEASE NOTE other cardiac Moms, I have "pre-registered" Rosie with our local 911 dispatchers. They have her diagnosis, history, her current weight, BP, HR and O2 norms and the addresses and names of her school and daycare providers and the addresses of where she is the majority of her life. That way, if 911 is called, they have a protocol set in place. I live in a relatively rural area, about an hour outside of DC with a local hospital not at all able to handle children with severe conditions like HLHS. I have instructed the dispatchers, upon arrival and evaluation, to contact Children's Hospital in DC with her status to see if immediate transport to their facility is necessary. And let me tell you, if they have to call 911 for her, they WILL need to transport immediately. I recommend that anyone with a fragile child do this in advance so that the information can be available in order to save your child's life. It's worth it.
Tomorrow morning we are first case. Awesome. I love to be there first when all the doctors and nurses are fresh. My initial reaction to needing to go was...damnit! Just being honest. Then I was like, "You know what, if this is what she needs, AMEN! Let's freakin' do this." She's bigger, stronger, and I trust whatever God's plan is for her. We had a conversation this morning.
I despise what the Fontan means to us. But I accept that it has to happen. It was hell for Rosemary the last time she had it. Literal hell. Six chest tubes and six months of agonizing over her quality of life in the hospital, her pain and her inability to punch this thing in the face was excruciating. But you know what, decisions were made, medicine and miracles walked hand in hand and she came through. We're up against the same thing, but I feel, with better odds this time.
I understand the nature of this disease, about as good as anyone, maybe except for the docs. I know my daughter, I know what she can do. I know that I'm not in control, really. And that even the best doctors really have a best guess at how things will turn out.
Here's where I stand: I trust God's will for her. She's a fighter and I will fight as long as she does. My armor is invisible and at the ready. Nothing can penetrate the love I have for my children. And when they're down, I will fight like a bull to get them back up. I have a silent strength in me that gets tapped when (pardon my french) shit hits the fan. I will do whatever it takes to keep Rosie smiling, comfortable and alive.
Make no mistake, I know how vulnerable she is, we are, and I toss that out the window as soon as I think about it. One day at a time. That's how it's always been. Constant denial until it's over. No life outside of where you are. It works for me. Whether she's in the CICU or at home in her bed, every second is cherished and knowing that it could all be taken, literally in a heartbeat, keeps me humble. For that I am thankful.
Amidst all of this, I am a full time nursing student. Just started clinicals last Tuesday. And you know, I could care less about my progress there. Of course I'm trouble shooting with my professors and I found out that I could take an incomplete and pick up next semester where I left off this semester. That's great news to me. I won't lose momentum there. My goal to become a nurse is Rosie inspired. I can't imagine how much better of a Mom I could be with the ability to have even more working knowledge under my belt. In any case, all our bases are covered.
So, we're gonna let it be what it will be, as my Father, Dave Irvin, says. And there it is.
I'll keep you posted. Thanks for reading.
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