Hooray for today! I finally got the chest tube shut off and disconnected from the wall. Freedom!
I can actually walk around the halls, use the restroom, and go down to the cafe now. If all goes well tomorrow with the X-rays and my lung stays expanded, then they will be able to take the chest tube out and I will be one step closer to heading home. The doc may want to ween me off of the IV dilaudid which will add on another 24 hrs to my stay. That’s fine, as long as I’m not confined to my room again.
Today was Kim’s daughter’s birthday. They had a little celebration in the game room area with presents from family and cake. Her daughter is absolutely adorable. It breaks my heart to see such young kids have to experience such a horrible disease at their age. I know Kim wanted to make sure that today was a special day for the kids and wanted to make it so the hospital didn’t seem like “mommy’s sick place,” I hope she accomplished that.
Gina returned back to AZ from her hometown of Buffalo, NY. It was quite without her here over the weekend and it was nice to have her back. We hung out pretty much the entire day doing mics things. She doesn’t have a car here in AZ, so once I’m discharged I want to show her the east side of the Valley. So far she has only experienced the west side. I know she has a list of places she wants to see before she has to head back to Buffalo for awhile so hopefully I can help her out with at least one of the places she wants to see (Kartchner Caverns, Sonoran Desert Museum, Humphrey’s Peak, etc).
She has been a great support for me since I’ve been here so I want to help her out in any way that I can. She is looking to move here once her treatment is finished. She is going to have to find a job first probably. She works in the telecommunications industry for Verizon (?) back home. I think our version would be a Cox Communications or Qwest. If anyone has any ideas, even if they are not in the telecommunications industry, let me know.
She already found a house that she is in love with and it comes fully furnished! She is working diligently on getting the financing put together to make it happen. The house is a model home and has been on the market for four years now, so I would think she has some time and room to negotiate.
I am starting to worry about my sweet tooth cravings…the doc put me on low doses steroids, but I think this still has an effect on my cravings of food. Regular hot meals don’t ever really sound good, but frozen yogurt, smoothies, gummy worms, cupcakes…those all sound delicious! I am just hoping I can control my cravings this time and not blow up like I did last time I was on steroids. The doctor and nurses keep assuring me that these steroids are different and I shouldn’t experience the water weight and disproportionate fat distribution like before. I hope they are right.
As far as everything else goes, the pain seems to be managed okay. I have IV dilaudid as break through pain medicine, but I am finding I need it a little more than every four hours. The chest tube is really starting to hurt. I am praying that when they take this out that I won’t start feeling the back pain again. I am on four milligrams of methadone 3 times daily. They want to get me down to 2 times daily, if possible.
I think my body has become tolerant of the 3x medication, so I may feel some pain if they reduce it now. I still feel tired when I walk longer distances. Tonight Wes, Megan and I walked the perimeter of CTCA. I had to sit down on a bench half way through because I was winded, tired, and my hip muscles ached. I have got to talk to my care manager about incorporating rehab into my regiment. I would really like to build up some endurance and flexibility. My body feels so tight and achy most of the time. Even as I sit here, my back is starting to ache and my hips are burning. The chest tube has a dull pain as well. The nurse just gave me IV dilaudid, so I wonder if my body has become tolerant of that pain level already. At home I would take 8 milligrams of dilaudid by mouth if I was feeling pain.