Hello all.

We are still at Hopkins, trying to get answers and running more tests.

Here’s the summary of what happened:

• Last Friday (like 10 days ago), I successfully had the surgery for the spinal nerve stimulator.
• During the recovery time at the hospital, I began to have chest pain and palpitations.
• I was observed in the ER, for 24 hours, before being moved upstairs and into a room.
• And here we are, 10 days later, still trying to figure it out.

So, did the stimulator not work?

• Its working, but not fully programed. They can only do a preliminary programming, post op and then they give two weeks to allow the device to fuse into place. At the appointment this week to remove the staples, they will do some additional programming.

Where do we go from here?

• Cardiology will be running a Cardiac perfusion Test either Tuesday or Wednesday. This will allow them to see if my large vessels are still open (a.k.a. the bypass grafts), and check to see if the disease has worsened in the smaller vessels. They take images of your heart at rest and then give you medication via your IV, to speed up your heart rate and it feels like you’ve been running.
• Given that my pain cannot be controlled, they have brought in the palliative pain team, the chronic pain team, cardiology team, Internal medicine team and the the cardiac transplant team.
• Until they can control the pain, I will remain at Hopkins with my trusty “health buddy”, aka mom, nurse helga.
• For some odd reason, I am responding to IV medications for the pain. However, when we try to use the oral meds, my body doesn’t respond. The doctor just came by and examined me. I am retaining fluid, so we will be working to get the fluid off. He thinks some of the fluid makes it harder for your body to process medications, which explains partly why the IV works better.
• Oh, and then there were hives in the ER, when they tried another medication.  #hellobenadryl

Say what? Cardiac Transplant team?

• We have talked about this in the past with my cardiologist at Hopkins. The timeline was 2-5 years, but it looks like the time frame may change. They will begin the initial workup, cardiac testing, etc, in the coming months. Because my situation isn’t critical, I would not be at the top of the list. So we trust in God’s grace and timing.
• This transplant would allow me to have a quality of life.
• What do we think about it? We are still trying to process it. Its still quite a few steps to go through, so we are taking it one day at a time.

How are things going?

• I was blessed this week-I was visited by a Catholic priest, who was able to bring me communion twice. I was also visited by a protestant minister, who prayed with and for me.
• After a few sleepless nights, the attending finally put in order for a PCA. When I am in pain, I am able to push the medicine and it administers a specific amount of morphine, instead of having to constantly wait for the nurse and always chasing the pain.
• My two incisions are healing well. The first week after the surgery, was really tough and painful. But this week, my pain is only when I move a certain way.
•  Im netflix ‘ing a lot, so I am not going crazy in these 4 walls yet.
• Mom and are hanging in there. Taking it day by day.
• We will at least be here for a few more days for more testing and coming up with a game plan.

Keep the prayers coming. We most definitely feel all your love, prayers and support.

Love, Kristin