By Amber M. Dubois
Life in a hospital is...it's different. Time passes differently, for example. Days fraught with tension and terror never seem to end, and the good days, the stable days, they fly by on the wings of angels.
I am in the Pediatric Intensive Care Unit of Denver's Children's Hospital with my teeny tiny little Beeka. She has a massive, systemic Strep infection in her blood and full on strep pneumonia in both lungs. She is in acute renal failure. She is intubated, on peritoneal dialysis, is receiving blood and platelets, and is being fed through a central line in her leg. She is critically ill and has been since Thursday.
I am officially one of those parents now...the one with the critically ill child that nobody knows how to talk to. I tell them that it's OK, that I understand, but I know that I make everyone uncomfortable. I really do understand and I hope nobody else has to have this experience, so that they can know the things I know....so that they can realize what needs to be said.
But, if I can help, I'll tell you the things I want to hear. From my friends and family, I just need to hear "We are here for you and we are praying." You don't need to offer to do things for me, although I appreciate that and I know that you want to help. You can't visit her, I'm sorry. I can't risk that you'll bring in an infection, or that she'll infect you--it would crush what's left of my spirit if you brought this back to your loved ones. We have plenty of food, we are doing OK, and we are waiting. Please don't ask me how this happened...I don't know. It started as a head cold, and now here we are. Please take your kids to see the doctor if they've been near mine or if they're sick and you're uncomfy with that. Please--there's no such thing as a paranoid Mom.
From the doctors, I need to hear "We will take good care of your baby and you will be taking her home." I need information, but I also need hope. I need them to remain hopeful and optimistic. I need their talk to remain positive in this room--there is no space for negativity here. I need them to remember that I am well educated in a lot of areas of medicine, but this is my baby. My heart...my soul...is bleeding for her right now. I am an aching, open wound and their words can act to heal me or they can act as salt. I need them to know that we value them, but that we won't be unhappy when we need to see less of them. We hope they don't take that personally.
It's weird to be in this group of parents--PICU Parents. I never thought I'd be here, but to know there's a prefab web of support, that we're not the first family who has gone through this and come through to the other side is comforting. I don't want large numbers of us. Every time I walk past a room with another parent who is sobbing and considering the potential of life without their precious child--well. It makes me weak with shared compassion. I have never before had a compulsion to attempt to hug strangers, but in this place that's all I want to do. We are all different in our tragedy, but similar in our grief. Some of us have had time to settle into this grief, like a fallen leaf settles on still waters, changing the surface with the slight, gentle force of its impact. Most of us have been thrust here with the force of a cannonball ripping through concrete. We are united this way, but seperate by the particulars of our unique situations.
There is comfort to be had, although it is strange comfort. It's the comfort taken from a nurse who sits down at her desk more than she stands up in your room, who can take the time to wonder how Brittany Murphy might have died, who can click off your child's chart long enough to check her FB status. If she has time to do those things, then maybe my little one isn't so bad right now after all. We take comfort when she loses medications, when her dosages go down, when they change meds to compensate for a new problem that has popped up by the betterment of her condition. We have milestones we check--weaning off blood pressure medication? That's a good day. Beginning nutrition of any sort? Excellent, especially when combined with a BP med lost. We are losing teams of doctors as we go, and although they are wonderful people who are doing God's work, we won't miss them. There is a small child on the ward who is, right now, crying loudly and yelling, and our nurse just told me "You'll hear that, too." and I felt a tiny chunk of me come back into place.
It is tempting to succumb to the grief and sit around all day staring at her bed, praying for her to get better. Even though at this point we know that eventually we will be bringing her home, there is still grief. My child might have permanent lung damage. It's probable that we will be taking her home on dialysis, that her kidneys will have lasting and permanent damage. There's a not inconsiderable possibility that she will at some point require a kidney transplant. But, we have to keep going...we have another daughter to worry about. She is doing well, is taken care of, and we have people all over the city working to make sure she gets a Christmas, with all the magic associated. She's gong to see Santa today and we'll have presents for her at Nate's, here at the hospital and at my Mom's. She will get to visit Chuck on christmas and help us open some presents that we'll get to choose from the Snowpile (gifts donated for this purpose). We will put them in Chuck's crib, carefully navigating the tubes and monitors, and we will have Christmas.
Time will pass, and things will improve. It will be a long time before we take her home. Even then, there will be recovery. There will be physical therapy and detoxing off pain meds and potential for further kidney work. The list of possibilities doesn't really bear contemplating, because we just don't know what's going to happen. So, we won't think about it yet.
I know this is not a funny post and I'm sorry about that. I wish I could be funny for you, to be my usual smartypants self. And to be sure, when we get good news, hope and joy bubble up inside of me and I can muster a few bon mots, a wiseachre comment or two, a pithy joke or a funny Chuck Norris comment that we've changed to Chuck Dubois (Superman wears Chuck Dubois pajamas.), but talking about this situation will always take my breath away and leave me deflated.
I hope you all have a fantastic Christmas, if you celebrate it. If you don't, then allow me to simply wish you the good tidings that accompany my holiday celebration. If you're the type who prays, please do so for my Beeka. If not, we're also accepting love, good vibes, well wishes and warm fuzzies. Anything positive you want to send into the universe, we'll accept it. Let me leave you with some advice....if you think there's something wrong with your child, take them to see the doctor. Please. Remember, this started with a headcold. If you take them in and there's nothing wrong, well, I'll buy you dinner. I'm posting updates on Facebook, and I'll accept all friend requests of anyone who wants to keep posted. I'm listed as Amber Benoit Dubois.
Stay well, my friends. You and your little ones.
