The days go marching one by one……… yet, not without incident or advent. Mom came out to see Gregory last Thursday and I had noticed that his Oral Thrush was back. This is when I hit the grocery store, anyhow, so I called the pharmacy and had them fill his Fluconozol. When Gregory and I headed back from Seattle, I had all of his medications transfered to the Albertson’s pharmacy, that’s close to our home. Not realizing that we would be out here for this long. Mom comes out once a week and I’m in town once a week, then Larry usually tries to head out every week. Between the three, I don’t have a problem getting Gregory’s meds. This one I needed NOW. I decided to head up to the hill and grab it myself, do my grocery shopping there, stop by the house and head back. There were a few things I needed to pick up at HomeHome. During my drive to the house, my stomach started doing flip flops and the anxiety crept in. I haven’t seen my home, or walked through the door since May 11. Seven months. I also haven’t taken Gregory anywhere near there. I do not want him seeing HomeHome and not stay. Not fair to him, at all. The closer I got, the weirder it felt to be driving those streets on my way home. Drive down my street, see the small changes, pull up in my driveway. The house is still in “remodel” mode. Thankfully. If it had been all pretty and such it would have been much harder. It was kinda crazy to see the cat, too. I then ran to the grocery store. When we left in May they had begun to remodel the store. Yuck. I don’t like it. I don’t know if that is simply because it’s different or I just don’t like it. Of couse I wanted it to feel like my HomeHome grocery store. Silly.
Thursday was also a taste of what it will be like when we get HomeHome. At least for a while. The checker at the grocery store knows our family. He’s been there for quite some time. Long enough for me to hear about his girlfriend turned fiance’ turned wife turned mom of one turned mom of two. They now are expecting their third. I haven’t seen him since Gregory was diagnosed, though. At least in a situation where a conversation occured. It was my first experience of running into someone who asks “How have you been?”. I looked at him, took a deep breath and told him the truth. It probably would have been easier to reply with a standard response and let it go. I have no idea what my true intent was in telling him. I question this constantly. I do not want anyone to think that I am attention seeking, through Gregory. Yet, this is a real experience, it has affected our entire life. How can I NOT say something? There’s also the advocacy and awareness piece, too. A very dear friend of mine reminded me of something, too. I neglected to thank him for asking and taking the time to listen. Need to remember to do that.
We still don’t have a surgery date for the placement of Gregory’s g-tube, EGD, GVH biopsies and six month BMA. It’s a very challenging thing to coordinate. Friday he was started on TPN. The nutrition that goes through his central line, into his blood stream. He’s now on TPN for 10 hours and nG feeds for 10 hours. This has given his tummy a rest and he is also receiving more nutrition. They started him out at a lower concentration of TPN. We needed to be sure he could tolerate them and check his labs for kidney function and nutrition levels. We had clinic today and tomorrow he starts a higher concentration. He will be a goal caloric intake, tomorrow. I can tell he is feeling better. He seems a bit brighter and wants to eat. His stomach now gets a 14 hour break. Which is frustrating. Sunday he had a scrambled egg and a slice of apple. This morning on the way back from clinic he was struck with some heavy duty stomach cramps. He hasn’t had stomach cramps since TPN was started, until today. He wants to eat so desperately. Which make eating around him a challenge. If I stick to foods he really does not like, it’s not much trouble. Except this kid has a pretty advanced pallette. It’s a good thing we aren’t HomeHome and he has to watch his siblings eat!
Larry came out Saturday for the night and Curtis decided he wanted to come, too. It was so great to have them both here, under the same roof with us. For an extended period of time. There were a few moments where I really questioned how it is going to work when we do get HomeHome. It’s very apparent that Gregory and I will be attached for quite some time, yet.
Since we aren’t HomeHome, with all the busyness that that brings, Gregory and I fill our days with reading, knitting, playing games…… It’s incredibly leisurely. I try to keep my head as busy as possible. The demons are constantly present. Which is another reason I do not go to sleep at a “normal” hour. I prefer to fall asleep while reading. Just kind of drift off, unable to keep my eyes open. When I hit the hay at a decent hour, my mind is allowed to venture and become vivid. My dreams are twisted, conficting and sometimes downright scary. How long will this last? In all reality, it will probably never go away completely. The frequency will decline. I hope. I would like to enjoy my sleep and comfortably sleep for more than five hours. I don’t have problems surviving on small amounts of sleep, I just really enjoy sleeping and would always like MORE!
My heart is just not in this, at the moment. I’m going to cut this short and come back another time. ’til later, gotta jet.