Jenney awoke at 2:30am with a headache. Tylenol, then tried to get back to sleep. At 5:42 she still had a headache and asked for more meds. She got her typical meds and some more Tylenol at 5:55.
Around 8am the OB came to see us. She had the results of the MRI of Jenney’s pelvis and said it all looked normal. The lymph nodes were enlarged a bit on the left side, but that was normal for pregnancy. Thank God.
The neurologist then came in to tell us we would be clamping Jenney’s brain drain, see how she does over the course of the next 2 days, and then decide if she needs a shunt. The shunt is a release valve to help drain excess CSF from the brain in cases where the brain is not doing that itself normally. It’s under the skin and drains into a body cavity, typically in the abdomen, but he really wanted to avoid that because the baby is there, and there is less room. This could potentially cause a pre-term delivery.
At 8:40 an OT (occupational therapist) came and helped Jenney to the bathroom, walk to the sink to wash her face, and brush her teeth. Jenney did all of those things very well. The OT wasn’t sure what else to do and so would recommend more cognitive exercises for the following day.
Around 9 the oncologist came for a visit. She said we had the option to have the subcutaneous nodules biopsied and checked for cancer. We could opt to wait and see if they grew instead, but the procedure was very minimal. Lidocaine is administered (local anesthetic) and then a needle inserted to grab a small core sample. We thought it would be prudent to check them considering the extreme implications.
By 9:30 (that was fast!) they were ready for us and wheeled Jenney down to the section of the hospital where the biopsy could be performed. Jenney had to be clamped for the move, and we waited for about 50 minutes until the doctor finished up with another patient. During that time Jenney got another headache, and started getting flushed. When the pain got to a 4 we called back up to have nurse Laura come back and unclamp the drain. Jenney started feeling better immediately. We’re still not sure if it was the anxiety of another procedure, no matter how minimal, or if it was a pressure buildup, or both. But it was stressful, to say the least. I think I still have some post traumatic stress from the migraines and any time she starts with a headache I verge on a panic attack. With the headache gone, they wheeled her in for the biopsy and told me to go wait in her room.
Jenney was back about 15 minutes later. Around noon she took a nap.
Around 1 nurse Laura brushed Jenney’s hair for her. As you can imagine, laying down all day really does a number on your hair, and Jenney’s hair is very fine, tangles easily. She really enjoyed that. Then we took a walk around the 4 wings of the floor again, with a walker, her entourage in tow (nurse Laura and me).
At 3pm nurse Laura came in to drain Jenney’s CSF collector and realized it was still clamped. It had been clamped for an hour, and Jenney had tolerated it very well. This was actually very encouraging, because up until now, I thought the experience we had earlier in the day where she was clamped and got a terrible headache was a bad sign. But this was a good sign, that she had tolerated it being clamped for an hour. w00t! It made me more hopeful for the following day where they would clamp it for a much longer period of time.
Around 3:30pm an OB nurse came to listen to the baby’s heartbeat for 20 minutes. They do this every day, and it’s just the best part of our day. Hearing that little guy’s heart beat, solid, fast, and strong. Each time he starts kicking, letting us know he’s ready to fight for his life. The nurse told us about her husband, who has melanoma. They had tried immunotherapy with an expert in Portland and this had halted it for him. I think she said it’s in his bones and liver and it’s not grown in 3 years now. But treatments are expensive. Still, more hope.
The kids and grandmas came around 4:30pm to see Jenney. We got Jenney into a chair so the kids could sit on her lap, and this time we let them all in the room together. They can be a lot, especially in a small place, talking over each other, but I thought Jenney had been doing really well so we should try it to see how she’d do with it all.
Viola brought a book to read again, and had made a book herself out of paper called, “Mom and Me”. It’s super sweet - written and illustrated by Viola, it tells a story of Viola and Jenney playing outside, then going to get ice cream, and then watching a show on TV. She’s such a little darling. It comes with a little paper scepter as well ;)
They stayed almost an hour and then Jenney started getting a headache and so I shooed them out, got her back into bed. Then her nurse brought her some meds and she fell asleep within 10 minutes, listening to K Love streaming on her phone (a positive and uplifting radio station around here). Maybe we should tell them Jenney’s story.
Around 10pm Jenney had another walk around the quads with the walker and we went really fast this time. I think she was trying to push herself a little, which is good; chasing kids ain’t easy. Brushed her teeth, changed her robe, and got a wipe bath from the evening nurse. We fell asleep after watching a couple of online shows, and awoke during the night at regular intervals for meds and blood letting.
That evening, our dear friend Lorena, Sebastian’s Godmother contacted us to setup a GoFundMe. If this story has touched your life, and you’re struggling to find a way to help, this is a way you can help.