Sunday, December 13, 2009

Sunday morning in the e.r.

There is a fear that one can only know when caring for a child. The fear that something is horribly wrong, but you can't seem to figure out what it is. Yeah. Abigail was sick....again. It was a weird chain of events that turned out fine in the end.
Abigail was fine when she went to bed last night. Slept all night. Woke up, took her medicine, played, just like other mornings. When I sat her down to give her breakfast the panic quickly ensued. I was giving Abigail yogurt. After the first bite she grabbed her cheek and started crying in pain. She kept signing hurt and grabbing her face. I tried giving her something else to eat (although yogurt seems soft and not something that would cause one pain). Everything was making it worse. Then I realized that her face was swollen on that side in front of her ear. I kept trying to think of any time she had fallen and hit it yesterday, just anything. Nothing came to mind, there was no bruise, and my brain was starting to think through scenarios.
The scariest one I could think of was of course a tumor. It fit the profile of a plexiform neurofibroma (it's not important that you understand what this is). However the fact that it appeared suddenly and wasn't on the MRI in November meant it would have been very fast growing putting her at higher risk for it being cancerous. So I'm watching the tears stream down my babies face and wondering if her face will be deformed. It is definitely one of the fears I have with the nf. It's not for vanity reasons. She is beautiful, and nothing can change that. It is more because I would like for my daughter to have a semi-normal life without getting stared and pointed at. So my thoughts were racing and my baby was in pain.
So I decided to take her temperature (not that it determines anything since she has had a fever for over a month now) and it came back over 100. I called the doctors office and the doctor on call said take her to the e.r. Ughhhhh...I don't like sitting somewhere not child friendly for hours with my daughter. I don't like having to deal with doctors who don't know her history. The more medical things that come up the less I want to see someone who doesn't have access to all of her information. I don't like feeling like Abigail is probably picking up a weird disease while waiting to be treated. I don't like the e.r.
But we went. It only took two hours total...truly amazing for not being a high priority case. At the end the nurse practitioner who was working came in's an ear infection that was also in her lymph node. I felt silly. I would have given her ibuprofen and taken her to our doctor tomorrow if I thought it was an ear infection. I couldn't have known, but felt silly none the less
So we are home, Abigail has acted fine the rest of the day and is on an antibiotic (again). Everything turned out to be not such a big deal.
All these appointments are taking their tole on Mama. I truly hope and pray that after Christmas we can go through a few months with no scheduled doctors appointments. I imagine that we will start her therapies after the beginning of 2010, but I think that seems a bit less stressful than all of these other things we have coming up.
However I imagine that we will be having some test to figure out why she isn't growing. We may be having an MRI to see if she has urinary tract reflex...and from there I know we will have a follow up e.n.t, well check, and pulmanoligist appointments in March, Neurologist in April, and ophthalmologist in June.
So I don't know if a break will come. I don't know if she will continue to get sick in between these times meaning more appointments. I am very ready for a break. I feel so wore out from all of the appointments. I have talked to lots of other parents whose children have special medical needs, and they all say the same thing I feel.
I feel like I have aged years in the past few months. There is something about walking through this that takes away whatever innocence an adult has left. Suddenly bad things can happen to us. The horror stories aren't just things that happen to a friend of a friend. They happen right here at our front door. Mostly that sucks. However there is something about this that is good.
That sounds like crazy talk doesn't it. However I know that I appreciate my husband and daughter in a way that I didn't before I knew that bad things could happen to us. I have always loved them both more than I can describe. However knowing that the promise of tomorrow is false means that I want to make sure Abigail knows how much we love her everyday. Even when she's whining and being disobedient; I don't want to take moments for granted. I hope that the turmoil and worry that comes in our life now spurs me on to be a better Mama and a better wife. If this doesn't change someone there is not much that would cause a person to evaluate life.

Now listen, you who say, "Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money." Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. James 4:13-14

Attempting to live our fullest today,

1 comment:

  1. I'm exhausted just reading about all your appointments. Thankful it was just an ear infection, but I can completely understand why you thought it might be something worse. Hang in there. I wish I could say something more encouraging than that.