Stole it!
Getting excited for high school!
Stole it!
*might be gross*
So, I am working on telling the hard stuff. I hate that. I am an optimistic person and there were so many silver linings in my health crisis. I love to talk about the God moments. But it seems it's these more difficult times that I am having a hard time working thru. So, here I type and hope my mom and dad never read them. There were too many dark days/nights to count.
So, this was July 4, 2015. I had my original surgery May 4th and was in the hospital in Houston for two weeks. It was hard on my family as we lived 45 minutes away. Someone had to be with my kids at home and me in the hospital. Parking was a beast. I was morphined up for most of the stay and things weren't exactly "right," with my body but we didn't know why. I developed what is called "Red Man Syndrome", which they didn't know at the time was caused by pushing Vancomycin, an antibiotic, too fast thru the IV. I swelled up like a tick and turned completely red. It was lovely and I was only half alert for all the pain meds. I only have vague recollections of that time. I was already incredibly uncomfortable having a 12 inch abdominal scar that was not doing a good job of healing. I was sent back for an Interventional Radiologist to insert a drain in an attempt to stop the additional fluid coming out the bottom of my incision. I was ultimately maxed out of insurance with no idea what was wrong with me. They discharged me home with elevated White Blood Cells and temperature spikes. After missing Field Day (where my son won the race and a precious neighbor represented for us) and spending Mother's Day in the hospital, I was so ready to go home. But it was bittersweet. I knew that elevated WBC with temperature spikes wasn't good. But no one knew what to do. How the trajectory could have changed from here had they done more for me.An angel walked thru our front door when Home Health assigned a wound care specialist to me to clean and pack my slowly opening wound twice a day. I loved her. I hated what she did. No one wants to stare into the open parts of your own belly and watch long Q-tips under your skin while feeling everything she did to clean my wound. I am pretty sure it was in this time that I cracked both of my molars. Another story, but clenching my teeth became the only way I could deal with the pain. Melani saved me when she said she wasn't happy with my status and referred me to a Wound Care Specialist in Tomball, ie much closer to home. But oh so many tears when I learned I would have to be re-admitted to the hospital.
So, this picture shows me being discharged from the hospital that saved my life. The hospital where I was assigned a new room after every surgery and my old nurses would come check on me even if I wasn't their patient. The anesthesiologists knew me by name. I had a cheering section there. As strange as it sounds, after three weeks there and walking the quiet halls at 3am, this was home to me. I was discharged to a less intensive hospital next door (per my insurance) because we were stuck. We were stuck in a holding pattern waiting for healing to occur and it wasn't happening quickly. We were really disappointed. John fought like heck with my insurance to prevent it, but they ultimately won....for a minute.
As silly as it is, I was taken by ambulance across the parking lot. It would have been faster to push me in a wheelchair. When we arrived mid-day, we were put in a room with very little attention which concerned us just a little. I had just left a floor with telemetry, hourly temperature checks for infection, a watchful eye by many on a regular basis. When John asked the nurse if they would be taking my temperature hourly, the gruff nurse said "Just at shift change." When he asked out of concern if they could take it hourly, she pulled out a thermometer and said "Do it yourself" and left him with a thermometer. This was our first red flag. We had been coached to be so careful to watch for temperature spikes in case my infection got out of control again. And now, no one appeared to care.
A little bit of background, in addition to 2 IV poles of antibiotics (10 to be exact), plus iron, potassium, fluids and occasional blood transfusions, I had 4-5 drains lined up across the bottom of my abdomen draining different abscesses identified in surgery. By this time I also had an ostomy that I had no idea how to use. {yuck} The nurses at my hospital across the parking lot did all of that for me. And my abdomen was open. No stitches, no staples, just a wound vac. They didn't want to close me up until they knew for sure all infection was gone. This wound vac filled about 12 inches or so? It was from my sternum to my pubic bone with a sponge cut to fit inside my open wound. A suction device was attached to it and it created a constant suction on my wound to keep it dry and increase healing. It was truly a remarkable piece of equipment, especially with such a large open wound. There was basically no part of my stomach that didn't have something coming out of it or bandaged up....or without pain. It was not a pretty picture.
Because I had an ostomy, where I obviously eliminated my bowels from this hole {sorry} and I had a wound vac, the two had to be coordinated during dressing changes. If the wound vac dressing was under the ostomy dressing, it would create a suction from the waste and pull it into my wound. Ie...a recipe for disaster, or worse yet, death by way of horrific infection.
When someone is working up in your business under your nose for the better part of a day, while I am not a nurse, I knew how they "dressed" me. When it was time for my wound vac to be changed that evening at the new hospital, the nurse came in and told us how much she knew about dressing changes and wound vacs as she was creating an obvious disaster on my belly. She didn't cut the sponge to be inserted INTO my wound, but placed a huge sponge on top of my wound and as mentioned above, made the suction suck from my ostomy into my wound. It wasn't suctioning my wound at all, but worse, the ostomy. I kept telling her I thought it was wrong. My mother-in-law knew it was wrong. But the nurse refused to listen. After watching my bowels be sucked into my wound, I fell apart. My non-hospital comforted husband blew his gasket and demanded we call our doctor, my surgeon, my caregiver. As soon as that happened, the aforementioned nurse came back in the room and tried to redo the dressing stating, "The doctor is coming and I need to work on this for a minute." John stepped in and said, "Hands off. Don't touch her. We are waiting for our surgeon." And she tip toed out never to be seen again.
Meanwhile I was laying on my back, partially humiliated, in incredible pain, devastated about the position I was in, barely able to move for all my attachments. I personally pulled the wound care back in a way that my suction was no longer pulling waste into my wound until my doctor got there. With my mother-in-law on one side and John on the other, we stood to take my waify self to the bathroom and my ostomy exploded. Disgusted, humiliated, angry, sad, helpless...all the feelings you can have while learning to use an ostomy, being incredibly fragile, knowing my current nurse was going to literally kill me, I fell apart. I threw my favorite house shoes in the trash, got cleaned up and waited thru tears for my lifesaver to come rescue me.
I know it was 4th of July because fireworks were going off out my window and at 10pm my amazing surgeon came to check on me. He asked what was going on in his cheery voice and thru tears I said, "Get me out of here." He wasn't used to hearing me complain and had a quizzical look in his eyes. He took one look at the shotty wound care (clearly inept) and simply smiled and fixed me all up without a complaint. But we knew he was upset. Meanwhile, my mother-in-law had walked down the hall and witnessed my kind doctor giving that nurse the what-fors. We aren't sure if she had a job after that. I still feel really bad for that, but bless her heart, she really put me at risk. Had we not known what was going on, things could have gone from horrific to devastating. And the next morning I was promptly transferred back to my "home" hospital, where my amazing surgeon reserved and paid for on his own dime, the hospital suite for me.
I cried all the time. I cried because I was putting my family out having to take care of me. I cried because my young boys didn't quite understand why I was in the hospital for so incredibly long. I cried because I was homesick and just wanted to sit on my couch with my kids. I cried not knowing if I would ever be normal again. And I cried when he told me he was taking care of us. He told me that I deserved it and that now my kids could come play their playstation and hook it up to the TV, use the kitchen and have more space so they could spend time with me. I was stuck in a hospital bed, but I was so grateful for the space it gave my parents, my inlaws, my husband and kids. God bless them. I was never once alone for a total of 2 weeks at Methodist and 5 weeks in Tomball. That is a LOT of hospital time for a caregiver. That made me cry too :)