Since we have spent so many times in the PICU now, I start to know when Jacob is on the radar of the medical teams and not. When he has his oculogyrical crises, we stay for 48 hours and don’t get much attention from the medical staff with the exception of that Versed drip that can’t be given anywhere else in the hospital. Then there are those times where the medical team, the neurology team, and his regular doctors check back several times a day to see how he’s doing and updating us on the plan. This time is unfortunately falling in the latter category.
Today, I felt Jacob looked better. He was interacting, smiling as I was singing songs to him, and stretching out his arms to show me satisfaction. Well, the neurology team told me that his EEG looks exactly as bad as yesterday. No improvement. No sign of relief.
We have a complicated medication schedule where they will read the EEG every 4 hours, and decide on the next dose of Versed based on how the EEG looks. So far the dose is going up every 4 hours, and it will continue to do so until we see an improvement. They are also decreasing some of his normal seizure medications replacing them with another stronger drug. At the same time, they need to balance the seizure meds with Jacob's respiratory status. No one wants an intubation to be needed.
I ran into Jacob’s neurologist downstairs in the hallway. She starts out by saying: “I am really worried about Jacob. Let's face it, he has had a really shitty month.” When Jacob’s doctor says that who really knows him, you know it’s true. That feeling that you have been carrying around all week as you have gone on with your life inside and outside the hospital is confirmed. You know that this is not like other times, that this time is more serious. She is thinking that Jacob might have had ongoing seizures for much longer than Sunday. She might very well be right. I have been on the phone with her numerous times each week for the past 4-6 weeks about changing seizures, and changing behavior in Jacob. She wants a picture of his brain to find out more. My feeling is that we can’t get to that though until he stabilizes, so probably early next week. One day at a time.
I also found out that Jacob’s metabolic doctor has analyzed the results from the liver biopsy, and that they did find something in the liver sample. They are coming to talk to me tomorrow. I know it’s crappy news. I just don’t know what it is. In a way, I am glad something came out of the liver biopsy, but it’s still a weird feeling sitting here waiting for bad news tomorrow. On the other hand, I knew it wasn’t going to be sunshine. I just didn’t expect them right now.
As you spend so much time in the hospital, you start friendships with moms who also live part of their lives in the hospital. You connect on a certain level, since we all have similarities in bringing up our children, and we have a desire and need to share. I got to see Jenny today after her daughter had an EEG in the hospital. We talked about balancing our healthy kids with our special need’s kids. We talked about working, and balancing it with therapy and doctor’s appointments. I then met with Heather, who has a daughter with mitochondrial disorder. Samantha and Jacob look so alike! We talked about our kiddos, similarities and differences. We talked about doctors at Children’s, who we like and who we don’t so much like. It’s that world that you never wish to become part of, but when you do, you also realize that there are lots of friendships and things to cherish in this world as well.
I am thinking in earlier posts, I have worried about celebrating Christmas as two separate families. I have worried about Sarah not visiting with Jacob. Tonight, I only hope Jacob will once again fight through this really rough patch.
I am hoping I have some better news tomorrow...
Love, Maria.
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