A little setback

I spent the last two nights in the hospital. On Sunday, I had flu-like symptoms all day. Major body aches and pains, intense headache, chills, no appetite. The usual stuff that comes with the flu. Finally at about 7 p.m. I decided to take my temperature. I was shocked that the thermometer read 101.7. My post-op instructions said that if I had a fever nearing 101, I was to call the on-call doctor right away. So I called. I didn't get Dr. Guber, he wasn't on call. I ended up talking to another doc, Dr. Kessler. Nice guy. But he wasn't too sure on the plan of action. My level of confidence in him diminished a bit as he said "I don't know" about 10 times. Finally he said that it was probably the flu, but the safest thing would be to have me check back into the hospital. They would need to run blood cultures to make sure I didn't have a bacterial infection in my body, especially on my new aortic graft.

Because it was bedtime and the kids were a little, uh, crazy, I decided to ask my friend, Chris, to take me to the hospital. Marlo really needed to get the kids to bed. Chris drove me to the hospital and stayed with me while I had my IV put in, blood drawn and monitors put on. She's a great friend. (She even came by on Monday to visit and bring me shampoo, People magazine and a Starbucks. Now that's a good friend!!) The nurse laughed at us when we asked if I would be able to go home that night. No such luck.

I spent the night dealing with a massive headache and sweating profusely. Hospital beds really aren't that "breathable." The mattress is vinyl and even though it's covered with a cotton sheet and a pad, you are going to sweat. And even more so if you are laying in that bed with a high fever. So I'd wake up in the middle of the night with damp sheets, gown, hair, and pillow. It was gross. My sheets were changed each morning, but still, it was gross. And because you are damp, everytime you get out of bed, or adjust yourself, or the air hits you, you get cold. I rotated between freezing and frying for two days. Thank goodness I was able to shower that first morning.

On Monday morning, Dr. Guber and his nurse practitioner, Sara, came by to see me. Dr. Guber explained that they needed to wait several hours for the preliminary blood culture results to show up. He figured I would be able to go home that afternoon, if the results were negative. He did tell me that my regular blood test showed that I had low white blood cells and he said I probably just caught a bug. But, they aren't going to risk anything since I was only 3 weeks post-op. Plus, they were concered about the now migraine-like headache I had. My headache was only on the left side of my head, around the temple, eyebrow and forehead and above my ear. Occasionally, I'd get a pulse of shooting pain. I had been given a combo of 600 mg Motrin and two Tylenols to take care of the headache. That drug combo seemed to take the edge off the headache. At about 3 p.m. on Monday, a good 4 hours since I had taken anything for the headache, Sara came in to tell me that they weren't going to give me anything for the headache because the Motrin and Tylenol mask a fever. They needed to see if I spiked a fever again, so I had to suffer for most of the day with a splitting headache, sweating like a pig with no appetite at all. Sara also mentioned that the blood cultures would take a good 24 hours until there were any results. It looked like I was in for another night at the hospital. My temperature stayed between 98 and 99 during the day and finally at 8 p.m., Dorothy, the nice nurse, gave me drugs. I loved Dorothy. About an hour later, my headache wasn't so intense.

This morning, I got word that my preliminary blood cultures were negative. Good news. I could go home. I still have a bit of a headache on the left side, with occasional, quick shooting pains. In a day or two, I will get the final results of the other blood cultures. I'm pretty sure they will be negative. At least I hope so.

I never want to go back to the hospital. It's such a bad place to be. Yes the nurses are nice, but it's still not a place I ever want to spend any more time. Marlo works with hospital people everyday. And he really loves his job. But he saw a different perspective in the last few weeks. It's really not a good place to be as a patient. It's quite depressing to be a patient. Of course, I am only speaking for myself, my experience.

Yesterday, I found out something interesting about my incision. I recently noticed a bump under the skin, right next to the incision about one inch from the bottom. The bump feels like a little bone fragment or something. It is kind of smooth and round and definitely noticable on my chest. Sara took a look and with total confidence told me that the bump is a WIRE used to hold together my breastbone. Apparently when they wire my bone back together they end up twisting the wires together, like a twist-tie, and then tuck the ends down. She said my bump was the part where it was twisted. She said that since I don't have any fat or "extra padding" in that part of my body, the wire will be noticable. Hmm, nobody ever told me this!! She also said that they could eventually take out that part of the wire, but I'd have to go in for outpatient surgery and be knocked out so they could cut it out. I'm not sure taking it out is worth surgery again. I guess I'll wait and see how it looks. I really don't want to ever go back to the hospital.

Right now I'm still feeling a little sick. I have remnants of the headache and occasional shooting pain on the left side. And I have a new kind of chest pain today. Of course the pain happened after I left the hospital. I feel like my incision is raised a bit on the top. It's extra tender there. And then, for the first time since my surgery, I have a pain inside my chest. Not bone or skin related. But it sort of comes and goes. If I still have it tomorrow, I'll call Sara and ask what she thinks. I hope she doesn't recommend me coming in. Did I mention that I NEVER want to go back to the hospital!?!?

It was great to see my kids today. When I picked them up from school, they both ran up to me and hugged me. But I feel a bit disconnected from them. I can't pick them up or run around and be goofy with them. And this might sound weird, but they look like they grew up in the two days I was in the hospital. I'm feeling like I am missing out on their lives right now. I can't fully parent the way I want to because of my physical limitations. And I get tired more often and need to rest. So I'm not fun-mom anymore. I guess I need to remind myself that they are still little and will probably not remember this sad summer. I'm already planning on how I will make it up to them in the future. Fun trips, movies, treats, etc.

I'm hoping for a comfortable, sweat-free sleep tonight.

Family, follow-up and photos

I dropped my mom and sister off at the airport this afternoon. They had been here a week, taking care of the kids and I. I really don't know what we would have done without them. Now, it's back to reality. No more "Can I get you anything?" or "No, you sit and relax, I'll change that poopy diaper." It's just Marlo and I. I'm so grateful that he is a hands-on dad. He is so wonderful making sure I get some rest, bathing the kids, cooking dinner, etc.

This last week with my mom and sister was fun. We did lots of shopping, eating at restaurants, and just hanging out watching movies. I'm gaining more strength everyday and I'm able to walk longer without needing a rest. My appetite is back and making up for lost time. I take regular old Motrin for pain. I still can't pick up my kids, which is so frustrating to all of us.

Today I met with my surgeon, Dr. Guber, for my first and last post-op check up. He was very impressed with my progress but mostly impressed with his beautiful work. The incision is healing very nicely and almost seems to disappear in spots. I really don't think I'll have a noticable scar. My blood pressure and oxygen levels are "beautiful" and all systems are functioning as they should. I was told to drop to one beta blocker a day and I can skip the one asprin daily as well. I was told again that I may have to have my bicuspid aortic valve replaced one day. Maybe 10 years from now, maybe 25 years or maybe never. There is really no way to know. I'll just get my yearly echos and hope for the best. Dr. Guber said that while the graft on my aorta is permanent, I do need to protect it from infection by taking antibiotics anytime I have dental work or if I go in for any other medical procedure. He asked that I wait three months before having any major dental work. I can start working out again by walking on a treadmill or taking a slow and easy bike ride, but no ass-kicking intervals or weight training for at least another month or two. It takes at least three months for the breast bone to heal. I'm just worried about my lack of activity combined with my new hearty appetite. It's been hard for me to go from being very active to nonactive.

Before my surgery, I asked my husband to take some pictures of me in the hospital. I wanted to see what I looked like right after surgery. I never once looked in a mirror during my 5-day hospital stay. I just looked at the photos for the first time a few days ago. They are pretty dramatic, especially the one where I'm unconcious with a breathing tube coming out of my mouth. I don't look pretty, but I wanted to capture this part of my life in a few photos. The following photos are in chronologial order from a few hours after my surgery to a few days ago, when Marlo and I had a date night. I love this new family photo. Gabe cracks me up, staring down and hating the camera. Lily with her perma-binky and red Crocs. Marlo with his arm around me. I'm so happy the surgery is over. I'm alive. I get to be with my family. Loving life.

Did I really say that???

I just re-read Marlo's post about the day of my surgery. I'm cracking up thinking that I quoted Stuart Smalley from Saturday Night Live. Seriously, I haven't seen that, thought about that or said that "affirmation" in a LONG time! That was so random...must have been the "heck, I don't care" drugs talking. Right before I left the hospital, one of the OR nurses came by to see me. I remember her talking to me right before they knocked me out. She reminded me that we were talking about Mexico and visualizing sitting on the beach with a pina colada in one hand and a margarita in the other. Now that's more like me. Marlo mentioned the rainbow in his post. I do remember the rainbow. As we backed out of our driveway to head to the hospital, we saw a wide-band rainbow stretching over the mountains as the sun came up. It was magical and gave me a sense of calm.

I felt pretty good today. I just realized that I haven't really seen my incision all day because I am wearing a crew neck t-shirt. I almost forgot it was there. I'm normally a v-neck gal, but I'm thinking the crew neck might be the way to go, especially on days when I wake up feeling a little blue.

Today I had lunch on an outside patio with my friend, Chris. It was sort of surreal. Really, was I sitting there? I had open-heart surgery less than 2 weeks ago. Nobody knew except Chris and I. It was like our secret. Life is going on "normal" for everyone. I ordered a frozen swirl margarita and sipped it throughout the entire 2-hour meal. A week ago, I was probably at my lowest point ever, dealing with extreme nausea and pain. But there I was, eating Mexican food and sipping a margarita.

Life is so good.

Getting better, bored and ready to blow?

I'm really feeling better these days. On Friday night, we drove a block up the hill and parked to watch the fireworks in Glendale. Glendale is a tiny 6 block city in the middle of Denver, best known for strip clubs and Super Target. I was feeling pretty good, although I was freezing and shivering in the unusually cold July evening. The kids seemed to really like the fireworks and Gabe fell asleep in grandma's arms before the big finale. We could see our driveway from our vantage point and it was funny that we drove the tiny distance rather than walking. But I wouldn't have made it up the hill! The next morning, we loaded up the van and went to a friend's house for a Fourth of July morning neighborhood kids-on-bikes parade and pancake breakfast. I walked a very large square block, following very far behind Gabe on his festively-decorated bike. I know several people in this neighborhood, so I got a lot of "OH MY GOSH...I DIDN'T EXPECT TO SEE YOU! YOU LOOK GREAT!" I had a nice time, although the long walk really knocked me out for a while. Jelly legs.

We had friends over for dinner than night. My friend, Bonnie, played with Gabe and Lily all night and catered to them during dinner. She's such a great friend. I ate too many chips and salty foods, so that evening, my belly was hard and very bloated. My left ankle was swollen for what I believe was the first time ever. It got a little scary when I felt that I couldn't get in a full breath because my belly was so "full". I decided that I didn't want to lie in bed in the quiet house thinking about it, so I stayed up late watching TV. In the morning I found that I had gained 3 pounds since the previous morning. Technically, I was supposed to call the doctor to report the swelling/bloating, but I didn't. I knew it was from eating too much salt the night before. Lots of water during the day on the 5th and I felt better by the end of the day. My weight was down to almost normal this morning.

Sunday night, we had dinner with friends from church at their house. We left Lily home with grandma, so we all had a relaxing evening...well, not grandma. Gabe had a fun and carefree time running around with his little buddies and Marlo and I enjoyed dinner and conversation with our friends. It was a very nice time, but I felt like at times, I was talking nonsense. I would lose my train of thought or forget the point of things I was saying. I've read that some patients who have been on a heart bypass machine during surgery have trouble concentrating, remembering things and sometimes speaking clearly in the weeks following surgery. Since I hadn't had a drop to drink, I'm blaming the pump. I've called Marlo "Gabe" and Gabe "Marlo" many times in the past few days. I read that this goes away in a month or so.

My big complaint right now is my numb and kind of painful left thigh. I was attached to the heart/lung pump by an artery in my left groin area, through an incision. Apparently there are a ton of nerves in the area that may be inflamed and the numbness will subside in a month or two.

I'm feeling stir crazy being at home all the time, unable to drive or really walk anywhere far. My mother-in-law, Anne, spent the day cleaning our house, washing floors and doing laundry, while I sat and organized some stuff around my desk. Both kids are in summer school from 9-3 everyday, so the house is painfully quiet. I have a lunch date tomorrow and possibly on Wednesday. My mom and sister, Jen, arrive Thursday morning and Anne leaves for Winnipeg on Friday. I'm really looking forward to seeing my mom and sister. It's been a year.

Marlo is very business-like at times, getting schedules set and planning for the next day. The house is running like a machine now. Fun times. I miss a bit of the chaos of not having EVERYTHING planned. Kids with no school or playdates, me trying to keep them happy and engaged, trying to figure out what's for dinner, Marlo and I watching funny shows on TV while drinking wine after the kids go to bed.

But I am feeling better and healing and I know that "good times" are coming again. Not like these are super bad times. I just miss our normal.

Feeling frustrated today

Good days and bad days. I know, I know. But I'm feeling frustrated. I'm sooo not a good patient. Or maybe to some, I'm a great patient. I'm very BAD at asking for help or for someone to do something. I'm also very bad at sitting around. I'm so bored during the day just hanging out and doing very little. It's making me irritable and irritating to others. I'm frustrated that I have difficulty asking for things. I'm frustrated that people around me cannot read my mind. I'm frustrated that I cannot pick up my kids, play with them in the backyard, lift my daughter into her crib, high chair or changing table. I'm very frustrated that plans for a summer visiting friends and family are now shot to heck. I'm tired because I can't get comfortable in bed and I'm frustrated that the giant, poofy recliner that Marlo rented for me to sleep in is actually more uncomfortable than the bed. I feel like an invalid when I can't slide open the heavy patio door or lift a full gallon of milk without feeling like my chest is going to split open. I feel cranky when looking at the dark lines of sticky residue from the miles of tape that covered things on my body.

Everything I've read about open heart surgery recovery and everything people tell me says that I'll have good days and bad days. Physically, mentally, intellectually, spiritually, all that. I know. I know we all need to settle into some type of routine here at home and that I need to get over it and just ask for help when I need it. At the hopsital, the nurses told me to measure progress by week, not day. It's been one week since my surgery. Physically, I'm feeling a million times better today than I did last week at this time. I know that at the end of this week, I'll feel better.

Back home and so happy to be ALIVE

My nurse, Summer, rips the tape off the last of my three IVs. Hurts like hell, but I'm so ready. She pulls out the IV and then puts more tape on it. She gives me my last hospital pain med, a potent combo of acetaminophen and ibuprophen. I get dressed in the mint-green pinstripe granny-pj top that buttons down the front and a soft black knit skirt. My 6-inch vertical incision is clearly visible out of the top of my shirt. Marlo actually says, "You're wearing that??" One look and he shuts up. Right now I only wanted to feel the sun and be outside and on the road home. Summer the Nurse helps me in the wheelchair and away we go. Wheeling through the hopsital after surviving open-heart surgery, I feel incredibly happy to be on "this side". The life side. As I'm wheeled passed my fellow ICUers and I'm so happy that I'm on this side, not that side. I see families in waiting rooms, awaiting word on their loved ones. I feel the tears well up thinking about Marlo in there, just five days ago, waiting for news. I think of my family and friends, anxiously waiting in Michigan, Canada, Colorado and other places. I'm so happy that WE, the Derksen and Allor families, are all on this side. My surgery is over. I have survived. I'm going home.

Home at last. My mother-in-law, Anne, is staying with us for another week or so. She greets me with a warm smile and asks if I need anything. I sit on the couch, feeling tired, sore and a bit nauseated. I get up, walk to my bedroom and for the first time in five days, I see myself.

I haven't looked in the mirror for five days. Seriously, five days of not seeing myself. I never thought about it before, but that's kinda weird. We see ourselves every day, many times. Head to toe, here is what I look like right now.

My eyes look sunken into my face a bit and I have very dark circles under them. My brown hair looks very witch-like, dry, frizzy and sort of wild looking. I'm already thinking about how I want to get it cut and colored. I have a scab and bruise on my neck where one of the IV catheters was placed. About one inch below my collar bone is the top of my incision. It is exposed, thin and red in places. There are no visible stitches. The inscision is covered with a derma-bond type substance that will eventually go away. What I can't see, but know are there are stitches, under the skin that will dissolve in a week or so. My sternum is held together with stainless steel wires. Those wires will stay in my body forever. My incision runs between my breasts and ends right around bottom center or my diaphram. About two inches under the incision, there is an odd little scabby hole from where a drainage tube protruded from my chest. Reminds me of how a newborn's belly button looks. One day the scab will pop off and I'll have my second little belly button. I have a few red scabs where pace-maker wires came through my skin. My left forearm is extremely bruised where an IV was placed. My right arm has a smaller bruise from another IV. My left groin area has another incision. This one is ugly, thick, about 3 inches long, and covered in derma-bond. This is from where my artery was pulled out to connect me to the heart/lung machine. My right groin had a gigantic bruise from the catheterization that took place two weeks ago.

Ok, the above description was probably TMI, but I feel like sharing! I'm just so happy to be here. And I want to look back on this in the future. Maybe someday down the line, I'll be angry at the kids for doing something stupid or maybe I'll complain about something random or feel angry at my husband. I can read this to kick my ass back into living, not complaining.