3/5 Evening

Yesterday when I posted it was the late morning. They were literally putting in the PICC line when I was asked to wait in the lobby to keep the area sterile.

They took out the swan catheter pretty soon after he had the PICC line put in. Cory was thrilled to have his freedom back, which I completely understand. He had to lay down for a little while, stood for a little while, and then went for a walk with the physical therapist. The physical therapist said that they were in "maintenance", meaning that Cory should be up and walking around at least four times a day, which is hilarious because Cory would have walked that whole hospital if they would have let him.

We went to the “healing garden”, which is this great little place on the 8th floor (where he was located) where you can go into this beautiful atrium and even outside! It was too cold, but we had hoped to go back today.

Kaitlynn was able to come by (yay!) and I think it was good for him to have someone else to talk to that wasn’t asking about doctor names, liquid consumption, and appointments the next day. I’m really happy because he had such a good day. They also had TRANSFER ORDERS IN PLACE! Meaning he could leave the CICU and move to a floor, they just needed to wait for a bed to open up.

Today was a little different. Today (Friday) we had to meet with a few people regarding being evaluated for an VAD (ventricular assist device) that is basically a pump they put on your heart to help the ejection fraction. Basically, his heart isn’t pumping out enough blood as it circulates through his body. If meds don’t work (which we are hoping like hell they do), he will be through the evaluation and ready to have the surgery.

So, we enjoyed a Clinical Engineer’s description of how the VAD works, along with props, and a Transplant Coordinator’s description of what would happen pre, during, and post-surgery (which was awful, we’re talking 4-6 weeks recovery in the hospital and I have to learn some medical stuff), and endured the fact that should this happen, Cory would be unable to swim, take a bath, or kayak. No boats at all for that matter, its an electrical device that cannot be submerged. We then had the pleasure of hearing all of the complications that could happen. I know they have to tell us and they gave us some statistics saying how unlikely all of the things were, but it was hard to hear. I cannot stress enough how much we would like meds to work.

We then got transferred. Finally! Cory is OFFICIALLY OUT OF THE ICU. He is in a more private room with a separate shower and toilet (no more curtain) and the door shuts and people can’t look in. Since he’s free and it was sunny today we hoped to go to the healing garden but with all the evaluations he has, we couldn’t. By the way, I counted, they took 14 viles of blood. And the bandage on his neck still suggests vampires, but I’m not there at night.

Evaluations:

Dental: in case he has something that could cause infection during or post-surgery

Carotid Ateries: to make sure there are no blockages in his arteries that could cause stroke after surgery.

CT Scan: In the abdomen to show that his organs can handle the surgery

(Don’t remember the name): A test to see blood flow in his arms and legs. He has had no swelling so they don’t think there’s an issue, especially with his age.

Pulmonary Function: Making sure his lungs can support his heart and vice versa.

Oxygen Test on Treadmill: To see his threshold for holding oxygen while he walks, etc. Because he’s on his IV meds now, they don’t see this happening until next week. Also, they kept saying “if you’ve been discharged we will need you to come in to the clinic for this” so, they’re talking like we haven’t moved him in.

Bloodwork: This was the 14 vials. I can’t even remember why they needed all of that.

Consultations:

Dietician: To see how he eats and plans for working with his medications on an VAD for the best results (apparently vitamin K is a factor, you have to eat the same amount per week and if you don’t you have to avoid it).

Pharmacist: To see how you plan to manage your medications to make sure you can keep up with the doses.

Psychologist: How are you doing with this? I imagine I know the answers to those questions.

Social Worker: Support systems and discharge info (if I wrote that down right) and going through all the visits needed after surgery.

Palliative Care: Recovery time, how is your home set up for you and your VAD. They also said that a home visit to make the best out of the device is normal.

Cory has endured today: Dental, CT scan, Blood work, pharmacist.

It was hard. We hope it doesn’t come to a VAD but again, if the meds don’t work then we have a plan B.

And his room looks out to the west, Miller Park (it will always be Miller Park to us) is the right in the middle of his view. That’s not nothing. Not the best day, but still moving forward.

Love to you all,

Sarah