I was in the hospital I think half of January between the three stays! I don’t even know how to begin this posting… I should be an emotional wreck. I should be crying and scared…but I am not.
I was in the hospital 11 days. IT SUCKED. Don’t get me wrong, the nurses are amazing over at the U BUT the residents and med students were less than impressive. In fact halfway through my stay they gave up on me. Did you know that was possible? Me either…but they did.
My PORT was made out of silicone and metal. It was supposed to be completely free of the plastic that I am allergic/reactive to. HA. Check out the photos for confirmation that STILL a giant hematoma. It is like Barney boob. At least that is what I’ve been calling it. It’s purple with lovely shades of yellow and green. The problem is as it goes so deep it hurts to breathe my right lung. I’m getting ahead of myself and I need to explain to the whole process…
I had my port installed and I felt were doing pretty good until day three… IT WOULD NOT STOP BLEEDING. I laid on the interventional radiology table for four hours while they tried to get it to stop bleeding. I was laying there and giving the guy peptalk as he worked at me. I don’t think that they usually have patients that are conscious. He worked hard and finally got it to stop bleeding, at least that was something. The pain was so intense I cannot even put into words and I feel like I’m kind of a warrior when it comes to pain but this was a pain never felt before. I guess it was not a strong enough sign that the PORT was a fail to the doctor. Less than a week later I could barely breathe when I got up and walk… see last blog post.
So what do you do when you know something is wrong but your Dr. doesn’t realize it?? Finally, I was in so much pain I could not breathe and I developed a line going up my neck from the port which signified infection. FINALLY, my dr said this was a problem. So, alas that was another ER visit. If you know me you know I hate the ER. Once I got there, my dr met me and they immediately took the port out. Then they put in a preferral IV that I could keep getting my life-saving medicine through. Problem was, I am also allergic to the cannula that they use in the regular IV…
Thus began the excitement, which I would think any meds students would jump for joy about… I guess I was wrong. They needed to find away to get IV medication into my system without using any sort line or tubing that contained the plastic that I am allergic to. Long story short … THAT DOESN’T EXIST. Seriously, how its possible that such a thing does not exist baffles me. When I was in the hospital they tried two different types and by the next morning each time they had swelling allergic reaction to them. I still have the deep bruising and pain even though they each were in for less than 24 hours.
Meanwhile, the entire time in the hospital they tried to control my mast cells, my pain, my swelling and tried to keep me from needing a padded room. LOL. I always tell myself that I am a trooper and a warrior and looking back I really believe that I am. After the 11 days my doctor had to admit defeat. Right now there’s no line that exists in which I will not react to. I think that’s a crazy because I feel like if it happened to me, its gotta happened somebody else right? Somebody else has to be going through the insanity right now too right? Someone else must need infusion medication and are not able to receive it because of the tube. It can’t just be me? Right???
So day 11 they had to stop my infusion via perreferal IV (which we had to change 5 times), apparently a person cannot go home with that kind of line. The Dr upped all the oral medications and sent me home. Thanks Medicare. You can’t keep a patient without a care plan…and my doctor can’t have a plan of care if what I need currently does not exist. I’m home. I missed my house a lot and I can’t complain, my bed is best, AND I missed my dogs the most. BUT I’m sick. I am on meds… LOTS of them, every six hours I take a handful of different things and I hate hate hate having to rely on something to stay afloat but I MUST. I’m much more sensitivity food and smell. We run really tight ship here at our house and I’m so thankful for Josh because he is aware of what will send me into anaphylaxis and he is not afraid to literally bat food out of my hand.
I look sick. I Look weak. Hate that. It’s been three weeks since the port of death and I still have a purple Barney boob. I still have the hematoma that causes me intense pain when I breathe. Okay so I have to laugh my mother just text me asking me how to take a better selfies. . That just made my day.
So because of the blood clot in my arm that was caused from being allergic to the PICC material I’m still on Lovenox shots. My stomach looks like it has a bunch of purple grapes growing up out of it, which is awesome because it matches my a purple breast and chest of doom. At least I color coordinate. HA!
So, Here I am sequestered. Waiting for medicine and catch up to me once again. I can’t have many visitors because my white count is still a little bit low and quite honestly I’m absolutely exhausted. My body is trying so hard to get used to not having stabilizing medication that I just feel fatigued. So I sleep. I eat. I bathe. Then I repeat.
I am so grateful for every one who has called, text, and to my old students who met up and SENT me a GIANT CARD filled with love. I am spoiled. Seriously. Everyone on Team Elle are so amazing. Josh, My mom’s mom, Joshua’s mother, my dad, even my brother have been amazing. I am still a woman toddler, now just a little more fragile than before.