I had posted a bit of an update the other day on my FB status. It was in response to a family member asking for the latest update on Patrick. Based on reactions to my status tonight, it is quite clear, not everyone saw/read it.
I apologize. I should have posted the update IN my actual status or here on my blog. I’ve been so tired to do any length of updating, it’s just much easier to talk to someone in person or on the phone.
Here is the update I posted the other day…
Waiting to hear from Neurology to see when the 24hr EEG will be. They have told Neurosurgery to hold off on the surgery till the seizures are managed. I left a message for Neurology this morning. Supportive Services (Palliative) called this morning and are coming to the house on Thurs to go over things etc…
Patrick is doing ok. He has bouts of animation, but still tires easily. Dietition has been in and he is needing to have 2 supplements/Ensures a day to make his caloric intake. OT is coming out this week to discuss energy conservation for him.
As the day goes on, he tires more. A nurse comes to the house 2x a week. He will get his stitches out today and will need a port flush in the next couple weeks. (stitches came out yesterday, port flush next week)
CCAC has given me information on services I can hire to come in at night if I decide to use a PSW or Nurse to keep an eye on him through the night. If I go this route at some point, it will be a nurse coming in, not a psw.
The money I have for respite can be used to pay for that service as well. It will just take those ‘hours’ away from the girls. Im going to call VON and see if there is additional funding somewhere so I don’t have to use those funds if I decide it’s necessary to have someone come in at night.
I used the term most are familiar with, perhaps that was a mistake, but it has also made people realized how serious this surgery will be. Supportive services will be supporting us leading up to, during and after the surgery. They will also be preparing us for things in case the outcome of the surgery is not what everyone is hoping for. No one wants to think negatively, but we do have to deal with the reality of the situation as well. Neurosurgery thought having them involved was a good idea for this.
In all the surgeries Patrick has had, I have never once thought he would never come out. I will maintain that thought through this one, but as I mentioned, I have to look realistically and be prepared for this one. This is a complicated and very long surgery and one that no one, even the Doctors are looking forward to.
I have my moments with things. I’m tired. I miss seeing friends and family, but very much appreciate when they stop by for a visit here to see us. It makes me feel like I’m still connected to the outside world and provides a nice distraction, even if only for a little while.
We appreciate all the thoughts and prayers everyone has been sending. Those who have dropped meals off because there are days I’m too tired to think about cooking or remembering to take something out to cook, it’s truly appreciated! Thank you! Our schedules have been off because of Patrick’s tiredness, so meals are not always at meal times.
Thank you everyone, I will try to keep things updated, but please don’t hesitate to call or message or come by for a visit if you’re wondering how things are and have not seen a recent update. I am tired.
HUGS to those who need them and thanks for those sent back!