New to This Mommy’s Heart? Check out my story from the beginning here – My PPCM Story
Okay, so I never actually swam while I was in the hospital. Most of the time I was there I had the total artificial heart and you can’t even shower with those. Let me repeat that, you are not allowed to shower when you have a TAH. Whether you have it for one day or one hundred days, you are never supposed to clean yourself in the shower. C’mon Syncardia, I know you created a device that saved my life and all but get that shower situation figured out! (kidding…but seriously)
After my tamponade, there was still a lot of pain in my back which was caused by my chest tubes. I was on a ton of narcotics, Baclofen and was using lidocaine patches and heat packs. Even if you are in pain, you still have to move so you don’t get pneumonia so on December 8th I walked for the first time in weeks. Using the cardiac walker, I walked all the way down the hall and back to my room. Woohoo…baby steps!
Meeting my nutritional needs was another challenge throughout my hospital stay. After surgery, you need a ton of protein to help everything heal. My husband just kept pushing Odwallas in my face. They are full of protein and really don’t taste that bad but after as many as he forced down me, I may puke if I ever have to drink one again. To supplement my nutrition, I was given tube feeds at night. If anything was motivating me to eat better, it was the prospect of getting my NG tube removed.
I’m not an easy person to surprise but I got the best surprise on December 10th. Previously I had scheduled newborn pictures for my daughter with this great photographer called Fairies & Frogs. She is amazing and if you live in western Washington, I couldn’t recommend her enough. Anyway, I was thinking about these photos from the very beginning when all hell broke loose and I was first admitted into Madigan. I emailed the photographer and told her we would have to reschedule because I didn’t know how long I would be in the hospital (ha, yeah, I really had no idea).
Anyway, by the time my extended hospital stay at UWMC started, I assumed these pictures were not going to happen, or at least not going to happen while my daughter was still tiny. To my surprise, however, my family and friends came together, reached out to the photographer and arranged for the shoot! The pictures are so amazing and they are something for which I will forever be grateful. The happy moments that came few and far between during my hospital stay were priceless. You can check out the photographer’s post about the shoot and a few of the pictures here.
Like I said though, the happy moments weren’t common in the hospital and the next day I developed new, severe pain. After a CT scan, they discovered a collection of blood between my uterus and rectum. They had been closely monitoring my hematocrit after receiving yet another unit of blood (#18 to date if you’re keeping track) but it dropped slowly overnight from 20% to 18%. This was the worst pain of my life. When asked to rate my pain on a scale of 1-10, I told them it was an 11.
The plan for that day, however, was for my husband to go home for the first time in 3 weeks and spend the night with the kids. This was important to both of us so my mom ended up staying with me that night. I was up in pain all night with my mom and the awesome night nurse that was taking care of me. Even when you are 30, it is nice to have your mom take care of you when you don’t feel well.
Over the next couple of days, the pain improved and it appeared that the bleed had stopped on its own. I received another unit of blood, however, because my hematocrit dropped to 16%. I finally had a great response to the blood and my hematocrit went up to 20%. On the 13th, occupational therapy came in and helped teach me how to wash my hair. Although I couldn’t get my body wet, washing my hair was very welcome. Also that day my chest tubes were removed, helping to relieve a lot of the back pain I was still experiencing. I was able to get down to virtually zero narcotics (happily because I’m not a fan).
While in the hospital, there were several services I was able to take advantage of. I had a variety of therapy type appointments with psych, the spiritual care person from palliative care and a volunteer named Jean. I also got to meet with music and art therapy.
Music therapy was great because the instructor would come in and do guided meditations. These were so relaxing and since I was having trouble sleeping while at the hospital, these sessions often helped me get a much needed nap. Art therapy was helpful because it gave me things to do instead of focusing on how sick I was and where I was at. Both music and art are things that I still try to incorporate into my day to day. I’ve found apps that have guided meditations and I try to do crafty things when I have the time. Even working on this blog is a great outlet.
The night is where things would get hard. After all of the sedation I had, I no longer enjoyed sleeping and dreams. After several sleepless nights and my ever-mounting anxiety over not being able to breathe, they started giving me trazodone at night. The trazodone helped me sleep which led to me being in a much better mood during the day which was great because Christmas was right around the corner and I certainly wouldn’t be spending it at home.
Medical terminology
- Baclofen
- Central nervous system depressant and skeletal muscle relaxant
- Lidocaine Patch
- A local anesthetic patch that works by stopping nerves from sending pain signals
- Odwalla
- Brand of protein shake
- CT Scan (computed tomography scan)
- 3D imaging that allows healthcare providers to see inside the body without cutting
- Palliative Care
- Specialized medical care for people with serious illnesses
- Trazodone
- Antidepressant medication that can be used to help patients sleep