A couple of housekeeping notes if you will:
We have started saying the Novena to St. Joseph for Jerry's employment situation. His lay-off date is September 19. He is interviewing within the company as well as with other companies but nothing yet. If you can join us beginning tonight. You can find the Novena here...
We still have the PayPal open for donations as well. You will find the button on the right hand side of the blog. Again anything donated goes to medical expenses and Courtney's living expenses including food for her new formula formulation. The cost of this homemade formula has jumped considerably these last three months. I know there will be additional expenses as we go forward with her palliative care in the coming weeks/months. Thank you once again.
OK...now on with today's lovely little exercise in fun...
This morning began with a very sleepy Courtney and a Mom fighting a headache of monumental proportions. I knew the past few days were catching up with me and quickly. My Mom had arrived to help me with this morning's Gastroenterology appointment with Courtney. Thank goodness, I had still had a Starbucks gift card and I knew caffeine would help my head.
My heart is a whole other matter.
I was dreading going to the G-tube clinic. I didn't want to face Courtney's weight loss or the fact that this was the first day of our new "normal". There is nothing normal about this journey. Nothing. I knew that once we arrived at the doctor's office and went through everything that was going to change, that when we left, we would be in a whole new ball game.
I don't want a whole new ball game. I want to go back in time six weeks and just pretend that all is well and Miss Courtney is kicking some serious butt. I want to go back to those days of her laughing and smiling constantly, with only one seizure instead of hundreds. I want to go back when she hummed and sang to me. Now all I get are sleepy snores and possibly a pirate eye twice a day.
This is not my Courtney. It makes me so very sad. I am trying to find the joy today and I gotta tell you it is a real stretch for me today. She weighs a mere 87 pounds. It hurts me to type that. She is only 5'3" due to her 31 degree scoliosis curvature. She would be 5'6" if her back was straight. She should weigh between 108-115 pounds. That's not going to happen with her current rate of seizures.
The dietician and neurologist figured out that Courtney probably burns anywhere between 350-700 calories per grand-mal seizure. She probably burns 75-150 calories with every petite-mal. You can imagine how many calories she went through this weekend when she was cluster seizing for a full 48 hours. Since her seizures have increased dramatically in frequency over the last six weeks, she is struggling to keep the weight on.The result of this is stress on her kidneys, liver and heart.
The first course of action today was to address her weight loss, then we needed to make sure she could get all the calories needed through her g-tube. It's not longer safe for her to eat by mouth between the increased seizures and the heavier pharmaceutical load making her sleepy 85% of the day. Not the best circumstance for avoiding aspiration pneumonia. After about 90 minutes with the G-tube team consisting of the dietician, gastroenterologist and the nurse practitioner we came up with a new formulation for her g-tube formula that will hopefully help her keep her weight steady and maybe even help her gain a pound or ten.
By the time we left there, I was ready for a nap. Instead we headed to the grocery store so we could get all the stuff needed for her new formulation. Olive oil anyone? Beef, Chicken, and Vegetable Baby Food anyone? Yogurt, Baby Cereal, frozen spinach, lactose free whole milk and the list goes on. Put it all in the blender and whammo...3000 plus calories later we have a new feeding plan.
It's a good place to start. I came home and made charts and notes and wrote out the new formula so Jerry and Jonathan and I are all on the same page. This way everyone knows what to feed her and when. It helps me feel less overwhelmed.
They also took more blood because they didn't like how she looked. A little pale, a little jaundice, a little this, a little that. Her poor liver and kidneys are just going through the ringer right now. Lungs are clear though so that's something to celebrate. We will take what we can get and try and be at peace with the rest.
Tomorrow we have the day off of doctors and I will be honest, I am A-OK with that. Thursday is the big day. Our meeting with Court's primary care to discuss her future care plan as well as going over a whole bunch of test results. We will also have a consult with her Neuro team to discuss her seizure meds.
In the meantime, you can find me baking some peanut butter cookies, possibly some zucchini bread and maybe even a lasagna or two for the freezer. Yes...when stress is high I head to the kitchen and work it all out one dozen at a time.
Thank you for your continued prayers and practical support. We are so very grateful...just so very grateful.
Labels: Courtney's World