Slow and steady progress
- Sep 15
- 6 min read
or, "just keep swimming"
I have been home for about 10 days now after my 23-day hospital admission.
As a review, I went to the ER with excruciating left hip pain. I spent 2 days in the ER and was finally admitted with a diagnosis of Sepsis. Not just any blood infection - but "MRSA bacteremia". I have been on IV antibiotics since August 18th. The infection caused an abscess in the SI joint of my left hip that needed to be aspirated. While in the hospital my left thumb swelled up with infection and had to be cut open and the nail removed. Additionally, the infection made itself at home on my aortic graft and caused a pseudoaneurysm (leak in my aorta). Because of my complicated cardiac surgery history - they were unable to open up my chest to remove the infection. The risk of another open-heart surgery and the complexity of my chest anatomy with grafts, bypass, artificial valves and scar tissue made the risks too great. But there was the option to try a vascular coil embolization of the pseudoaneurysm. This procedure was endovascular, meaning they went through the artery in my groin using minimally invasive techniques - much like an angiogram. The surgeon had worked on two other cases like this in the past and was thrilled to show us pictures of those coiled of aneurysms. Ultimately, we decided to go ahead with the coil embolization, and it was a success! I had been receiving narcotics every 4 hours for the pain in my sternum and back. The day after the surgery I only took Tylenol!
Here is my understanding of MRSA bacteremia. The antibiotics have cleared the infection in my blood. However, other infection sites (my hip and thumb) had to be surgically opened to clear out the infection. Because they are not able to open my chest to do a "wash out" or remove the infected graft, I will have to be on antibiotics for the rest of my life. This will hopefully keep the infection at bay, so that it doesn't spread to any of my other "extra parts". Apparently, infection targets the parts and pieces that are foreign to your body. I am on a 6-week course of IV antibiotics (minimum) and then will transition to oral antibiotics.
Review time concluded :)
So - what has been happening since I have been home? Penelope the PICC line and I have become really great friends. A Home Health Nurse comes on Mondays to change my PICC line dressing and draw blood. Then, every night I give myself "IV push" antibiotics through Penelope. I attach a small syringe to Penelope and slowly administer that syringe over 5 minutes. There is quite a bit of cleaning things with alcohol swabs and saline flushes as well. Hubby often helps me get the supplies ready and hands them to me in order.
I also have in home PT through the Home Health Agency. The PT comes twice a week. We have progressed from walking in circles in the house to walking outside up and down the sidewalk. I do not use an assistive device in the house, but I do use a walker outside for stability. My left hip has some stiffness and muscle weakness - but I am making progress.
I had a follow up appointment with the Orthopedic Team for my thumb. It has been wrapped up with an ace bandage for weeks. Initially I had to soak it in a betadine solution twice a day and then have it redressed. I called that treatment the "thumb spa". Then it was left dry, but rebandaged twice a day. The doctor last week removed the wrap and said my thumb could be free. It was kind of sad looking at first with peeling skin and such - but now it looks great. The incisions are healed, and the nail has started to grow back. It is amazing what you can do with two usable thumbs!
My infectious disease doctor has called to discuss treatment. He may extend my course of IV antibiotics if I can tolerate it. The weekly blood draws monitor my kidneys and liver - among other things. I have been educated about potential side effects and know what to look out for throughout the treatment. My labs had a few wonky numbers last week (nothing major) and his nurse called to talk through the results with me. I have a video visit with him in early October.
The vascular surgeon has me going for a CT scan this Saturday. Then I will have an appointment with him early next week. This will be my post-op appointment from the endovascular coil embolization.
Knowing that there is still infection in my chest is terrifying. But not quite as terrifying as when the cardio thoracic surgery team told me that my pseudoaneurysm would continue trying to push out of my chest and would eventually be fatal. There is some speculation that the scar tissue in my chest was actually keeping my aneurysm from expanding - like sort of forming a cage around it. Crazy, right?! While I was in the hospital I was seen by the Palliative Care Team. They came by before the cardio-thoracic team made us aware of their conclusions regarding the infection and surgery. My hubby called them the "doom squad", which is a bit how it felt to have them show up without knowing they were coming. Do you know what Palliative Care is? In my case, they gently told me that I would not be cured, and that they would help me navigate how I wanted to live my life moving forward. After the initial shock of the "doom squad", I found their care and perspective to be empowering - giving me a bit of control in a situation that seemed out of control.
Being home is great! I am so grateful to be able to sleep in my own bed (with my hubby snoring next to me), see my dogs, have visitors, take a shower, eat my favorite snacks, etc. But being home and navigating my recovery also comes with its challenges. Some days I stay in my PJS to save energy. Other days I am able to get dressed, or even shower. Any activity outside the house (doctor's appointments, dinner out, etc.) usually then requires a full day to rest and recover. I am able to go up and down the stairs but try to limit my trips if possible. Sleeping at night has proven to be a bit challenging. I often wake up in the night stiff or sore. I have to sleep propped up on 2-4 pillows and a squishmellow in a very elusive combination of how they are placed. I am exhausted by 9PM, so I haven't really had a hard time falling asleep initially, it is the staying asleep part that has proven to be challenging. Some days I nap during the day, and some days I don't. Hubby cares well for me but also allows me to be as independent as possible. My schedule revolves around nurse visits, doctor's appointments, PT, and my daily IV antibiotics.
So - that is the status of life currently.
Oh, except for one thing, Hubby and I are supposed to be on a Disney Cruise right now. I kept holding out hope that we could make it work - but it wasn't meant to be. I cancelled and cried a little. Disney Cruises and the Disney Parks (well actually all things Disney) are my happy place. I am in the process of filing a claim with our travel insurance to try to recoup some of the money we paid. Hubby kept his days off so we hope to do a few things this week. I would like to try to go to the movies and possibly go to my son's college campus to see his new dorm room. These may seem like simple things - but I don't take anything for granted anymore.
I continue to be blessed with texts, cards, phone calls, visits, home cooked meals dropped off my friends, meals courtesy of the gift cards we have been given, and my weekly drop off of zinnias from my bestie.
I will "just keep swimming" and take each day as it comes - knowing each day is a gift that is not guaranteed.
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