At one of our prenatal visits, Annie’s cardiologist told us we’d have a critically ill child. He went on to say that having a critically ill child is one of the most stressful things on a parent as an individual and also on the parents’ marriage relationship. Since we’ve been at home for 6 weeks living a totally normal life, I started thinking he may have over prepared us. Now, I get it.
I’m learning that having a critically ill child means a multitude of things:
-Having her treatment be our lives’ main priority because it directly correlates to her survival (Did I mention we’ve been searching 3br/2ba in Philadelphia on realtor.com? Just for the “fun” of it, ya’ know?)
-Missing our other daughter so much that a simple phone conversation sends me into a deep funk. Her saying, “Mommy hold you. I’m ready go home. Bye, Mimi,” is not easy to hear. I, too, am ready to go home, Audrey. I’d give anything to be there soon!
-Being homeless, except for a hospital “bed” in Annie’s private room. Which also translates to surviving on 2 hours of sleep, eating out every meal, using public restrooms for days on end, and fighting over the cardiac family house community shower. I really did almost get beat up for carrying my shower stuff into the bathroom at the wrong time. Just as I was closing the door yesterday morning, another mom shoved her way in next to me and smarted (head bob and all), “I know you see me standin’ here with my shower stuff and I know you ain’t ’bout to be gettin’ in the shower when I been waitin’.” I thought about telling her how long I also had been waiting and declaring that I was also clearly standing there with my shower stuff NEXT to the actual shower. And then I reminded myself, it’s just a shower.
Whew things can feel crazy here! And those logistical details have nothing to do with Annie’s health. They are just an added bonus.
As far as what it means for Annie to be critically ill, it seems to mean that although everything seems fine, it isn’t now and never will be. Since we got here Saturday, they’ve run countless blood tests; taken 3 chest x-rays; conducted 1 heart echo; documented every ounce in and weighed the diapers to count every ounce out; and watched her heart rate, respiratory rate, blood pressure, and oxygen saturation every minute of every day. Sometimes the things they find on the screen are not what they see in Annie. Her cardiologist admitted that they feel they’re treating a screen rather than a baby. Because last night, for example, while I “slept” in Annie’s room, all of the sudden a herd trampled down the hallway to our room, blinded Annie with glaring lights, tore her blanket open, ripped her shirt up, shoved their stethoscopes simultaneously in their ears and to her chest to see why her sats were alarming the nurse at 68. Annie was comfortably asleep until they continued with slamming her bed flat into CPR position and laid the CPAP mask in her crib just in case. As she roused, her pink cheeks creased and she sweetly smiled up at the panicked party. The doctors easily concluded that they thought she was okay.
This morning when the team rounded, there was a new plan. Thankfully the doctor said that he actually thought that her medicine and medical treatment could be causing her low sats and blood pressure. She’s been so bothered since she’s been here and that would upset anyone. Hey, I’m 30 and I can promise you I’d cry if my feet got pricked for blood multiple times a day and I had continuous IV meds stinging into my right wrist. He gave orders to lower her IV drip and increase the oral version of her medicine and for the nurses to otherwise “leave her alone today.” Music to my ears!
He was right! Her blood pressure is great. Her sats are up and her oxygen is almost back at room air level now. Just in time for her 8 o’clock dose of oral meds. So we are still waiting. We don’t really know anything at this point. They’ve told us that they want to just keep watching her and waiting and that they will not send her home until it’s absolutely safe to do so…which they said could be sometime this week if they see her respond well to oral medication plus increased function indicated in an echo or it could mean not until after her Glenn procedure currently scheduled for August 18.
That makes me so homesick that all I long for is the comfort of a quaint rock house off of a Calumet, OK red dirt road where Nana is working up a glass of sweet iced tea and Papa sits rocking on the front porch.