This is just an update on things here — mostly me. I seem to be dominating the Rosenow story these days, and I’ve added a little extra drama to life around here.
I had my first of two planned surgeries on August 20, and everything went mostly as expected. The abdominal mass was larger than imaging indicated, and due to some bleeding problems during the surgery and the effect of the mass on other tissue in the area, my surgeon ended up removing a little more of me than she had hoped. I was happy to have been able to keep one ovary, as that is believed to help regulate hormonal balance which offers protection against heart disease, “bad” cholesterol, and even dementia. My surgeon was also happy to discover that there had been no damage to the bladder or ureters, and the pathology report confirmed that everything that was removed was benign as expected. These last two pieces of info brought great relief.
I did so well overnight, that she agreed to let me go home the next day instead of keeping me two nights as she had planned to do.
Initially, my recovery progressed as expected, and my pain level, while definitely not fun, was mostly manageable. The only mildly concerning piece was that I began running low-grade fever about two days after surgery, and those fevers just wouldn’t go away. I was also experiencing severe fatigue, but I had been told to expect that, so I didn’t worry too much.
Then at about Day Six post-op, I began noticing some abdominal bruising. I wasn’t really concerned by this, because with a ten-inch incision and removal of organs, I expected that there would be some bruising. But the bruising spread and deepened quickly, so that by Day Eight, I was feeling a little surprised. My fever was also beginning to run a little higher, and I contacted my doctor. She did some blood work, and she repeated a COVID test just to rule out the possibility that I might’ve picked that up in the hospital. My bloodwork, while not normal, didn’t look too bad for having just had a surgery that had involved a decent amount of bleeding, and my COVID test was negative.
By Day Ten, the extent and depth of the bruising and the accompanying swelling were truly shocking. My abdomen, the entirety of which looked very much like a gigantic eggplant, had also developed a large, hard mass that was very warm and very sensitive to touch or movement. I sent a photo to my doctor via My Chart and told her that I was a little worried and just wanted to make sure this wasn’t something that needed to be checked out.
The next morning, My Chart showed that the message had been read by the office staff, so I waited. I didn’t hear anything that day or the next, which is unusual for my surgeon who is a wonderful communicator. I was still running fevers, but was able to keep them low-grade with Tylenol, the fatigue was real and very difficult to manage, and the pain was waking me all through the night and making it hard to function throughout each day. The bruising seemed to be fading suddenly and rapidly, but the swelling and other issues persisted. So I called the office and talked to a nurse and asked her to please just confirm that my doctor had seen the photo and message I had sent to her. She looked in my medical records, saw a note from the doctor, and assured me that the doctor had seen the photo.
I knew I had an appointment with the doctor yesterday (Friday, which was Day Fifteen), so I tried to be patient and wait. When I got to that appointment, I started by showing her the photo from Day Ten, and I asked her if she had seen that photo when I sent it to her. The alarm on her face was confirmation that she had never seen this photo at all, and she was very worried. She told me that this was absolutely not normal post-op bruising, and that, if she had seen it, she would’ve brought me in right away that day, done a CT scan, and probably admitted me for IV antibiotics.
She explained that it was clear that I had been bleeding internally (probably a slow leak or ooze which has stopped now), and upon examination, she diagnosed me with cellulitis. She then proceeded to discuss how dangerous this can be, explaining that, if we can’t get it turned around quickly, I could end up back in the OR where she might even have to open things up and clean out the infection.
She was clearly upset that the picture and my message had never gotten to her, and she plans to try to figure out how this happened. It seems like someone on her staff saw it, but then failed to pass it on to her (which is the normal process, if we are understanding things correctly), and that the nurse who saw the note in my medical records misread that it was actually a note referring to an earlier My Chart conversation with my doctor and not the message I sent with this important photo. Regardless of what happened, this mistake resulted in my body fighting cellulitis for five to seven days, without the assistance of any treatment.
Because my fevers have remained low-grade with the use of Tylenol, she agreed to start with a more conservative approach of putting me on a round of oral antibiotics. rather than admitting me right away. One of the complicating factors with that plan is that, for some bizarre reason that I can’t begin to understand, my body has developed allergies to a large number of medications over the past year and half. I can’t even take Motrin any longer. I am allergic to some of the best oral antibiotics for fighting this, but she decided to try Keflex, knowing I might have an allergic reaction to it because it’s a penicillin-type drug (Penicillin is one of the drugs I’m allergic to.) She warned me that I needed to be prepared for the very real possibility that I might end up in the emergency room this weekend, and then admitted for IV antibiotics.
She also told me that this cellulitis could cause my beautifully-healed incision to open up and urged me to watch closely for any signs of that.
It’s frustrating that this happened, but we aren’t mad at anyone. We are thankful that she is trying to discover how it happened in order to, hopefully, prevent this from happening to someone else in the future, but this is where are now, and we’ll start here and move forward.
I’m so thankful to have a clear explanation for why I’ve been having such a terrible time recovering, and really hoping I can heal now enough to be ready for my foot surgery that is scheduled in less than two weeks. We will just have to see how the next day or so goes.
I’ve been too sick to attend any of my appointments for treatment of the subluxated vertebrae in my neck, so I will probably have to regain some ground there when I finally get back in. But I have managed to do most of my at-home therapy almost every day in spite of all of the complications, and my neck has remained mostly not too bad.
Quick update on Kathryn, Lilyan, and our elderly dogs:
Kathryn has done very well overall. Some seizure activity here and there, but nothing big or alarming. She will have another increase in her VNS settings in about three weeks.
Lilyan has not been able to start her bisphosphonate infusions yet. This is partly due to me, and partly due to the fact that she had to have surgery on both of her feet. Two surgeons (plastic and orthopedic) worked to clean out a small wound that we’ve been trying to heal for over sixteen months now (started as a pressure sore that developed when she was in ICU last year) and to release some tendons to hopefully relax some severe curving in her feet. This is not unusual for children with lower-limb paralysis. Scott took her for this surgery, and she came home the same day sporting this pretty red cast on one foot and a soft dressing on the other. This has added some extra work to our in-house Rosenow Care Team, but we are still managing,
Saxon is falling more and is sick more often, but he still doesn’t seem to be in enough pain to justify taking the final step we all dread. Godfrey continues to fight a severe UTI after four rounds of antibiotic. He’s on his fifth one now, and we’ll check again on Monday to see if we’ve finally managed to conquer that. He also doesn’t seem to be too uncomfortable yet, so we are just continuing to love on both of them and watch them closely.
I couldn’t postpone school any longer in spite of how ill I’ve been, so with the help of a few of our older kids who haven’t been able to go to work due to COVID, I’m managing to do fairly productive school days from the couch. They are excellent classroom assistants, and I’m so very thankful for their gifts and their loving servant hearts. I’m completely exhausted by 1:00 p.m. and usually have to come upstairs and climb in bed for a couple of hours afterward, but we are getting it done.
Mostly, the fact that we have done as well as we have has been due to the provision of so many meals. I had hoped for five meals for our family during my recovery, but God blessed us with ten! I had no idea how much we would need these! My care and need for help has added a lot to my children’s already heavy workloads each day. Our gift cards are all gone now, and this week, we will be attempting to add meal prep back into our days. Prayers for that would be so great.
Financially, we are still praying for some very big answers to prayer, but God has continued to carry us through one day at a time right now, and we’re trying to rest in that.
Thanks so much if you managed to read this all the way through. Prayers that my body will tolerate and respond to the Keflex over the next couple of days would be so appreciated. I would really, really — like a LOT — love not to end up back in the hospital. And I would love for the pain and swelling to subside enough that I can begin to sleep through the night.
Have a blessed weekend.