Feeling gratitude and not expressing it is like wrapping a present and not giving it.
— William Arthur Ward
In this case, I’m not sure I know how to express the gratitude we are feeling right now. So many of you have contacted us with prayers, good vibes, blessings, thoughts of well being, and expressing how much you want to help. Each message I’ve met with gratitude, and each one means so much to us. Thank you from the bottom of our hearts.
We have a friend, Katie who started a meal train for us and the response to that has been amazing, with folks signing up through almost the end of March to provide our family with dinners. A warm thank you to those who have signed up for that, and a warm thank you to Katie as well.
Our friend and Sebastian’s God Mother, Lorena then started a GoFundMe to help us cover medical costs. We had over 10k in donations in the first 12 hours. I never would have guessed there would be such a response. We’re floored, and forever grateful. We’re not sure how we will ever thank everybody, but we will certainly try once we can breath again. But for now, I say thank you, thank you, and thank you again. Thank you Lorena for the idea, and for setting this up for us.
Today was a big day for us. This is the day the doctor wanted to turn the EVD (External Ventricular Drain, or what I’ve been calling a brain drain) off. This is a tube that runs from Jenney’s head into a measuring device, and drains excess CSF (cerebrospinal fluid) and blood. They have multiple valves that can be clamped, and they do so every time Jenney needs to change position, or get up to go to the bathroom. Today they would clamp it for a longer period of time to determine if Jenney’s body can drain the excess CSF on it’s own.
At 7:26am, the doctor clamped the drain, adjusted the stitching around the tube a little bit, and then we waited. She started to get a headache, and so they decided to at least monitor the pressure through the EVD. I watch it on the monitor with her heartbeat, somewhat anxiously, hoping she handles it well.
At 8:00am we took another walk with the walker around the quads. At 8:26 Jenney started getting a headache, about a 3 (not too bad) but we laid back down to do some resting, deep breathing, and listen to some K Love radio.
Around 10:30am an OT (occupational therapist) came and did some exercises with Jenney while I talked to the insurance company, trying to get a patient advocate for our case. We were both successful :) and after her OT session, her headache was better. So far so good.
Jenney started with another headache around 11:45, about a 3 again. The nurse checked all her vitals again, and by 12:00 she had fallen asleep. She slept for almost 1.5 hours until it was time for her typical meds.
My mom and Jeanne came a little while later with Sebastian, who raced up to Jenney and gave her some quality snuggles. He’s also becoming a bit of a favorite with the nurses around here. He’s just so damn cute. Everywhere we go people turn their heads and smile at him it seems. Jeanne stayed and I headed home with Mom and Bash to get a break from the hospital, take a shower, get some things done around the house, and pick up the kids from the bus stop. They were super happy to see me, and I’d certainly been missing them. They raced into my arms and I squished the heck out of them. :)
Jeanne had some great reports that afternoon. Around 3:30pm the neurologist came back to check on Jenney and said everything looked good. He wanted to keep her for a full 48 hours for observation, then we’d do an MRI and if all looked good still, we’d remove the drain.
Then around 4:30pm a PT (Physical Therapist) came in to work with Jenney. She walked around the floor without a walker for the first time, went through some stair exercises, and did a fantastic job. So good that the therapist said she was going to sign her off of their case load and that she didn’t think she’d even need outpatient physical therapy.
Wow. 1 week after major brain surgery. From not being able to sit up, to not needing any physical therapy. Is someone praying out there? I think someone is praying out there…
But the ups are not without the downs.
Around 8:00 Jeanne messaged that the oncologist had come back with the results of the biopsy they’d done on the subcutaneous nodules. They were found to be melanoma, and thought that this might be the origin since melanoma typically starts closer to the skin, and then can move to the brain.
I reeled with the implications. Would they need to deliver the baby early after all so they could start treatment? Would treatment mean the baby would need to be bottle fed? How was Jenney taking the news? Would it cause her brain pressure to go up?
“Hold her hand. Remind her to breath deeply.” I messaged Jeanne.
The kids, mom and I, and Viola’s best friend all polished off some home made mac and cheese that Katie had brought. Then it was bath time for the kids. I filled out some paper work, messaged some friends, took care of the chickens, and collapsed into bed. I fell asleep listening to K Love, knowing Jenney was listening as well, and felt a little closer to her.