Another bitterly cold day here in Michigan....we're about 20 degrees colder then we are supposed to be. Now I like winter but sheesh,enough is enough already....I want it to warm up so we can go outside and warm up,walk around a bit.
Right now I'm upstairs typing this entry,Lori is downstairs in the quietness of the family room....trying to hold to her dinner...its been a rough couple of days on the food front. While we made it through the weekend is decent shape,our experiment with some simple mac and cheese last night proved a huge mistake even after we had mushed it to almost like baby food and taken two Ativans before she ate. 25 minutes after she ate,she lost it....I think our mistake was two fold,she didn't eat enough throughout the day so there was nothing in her stomach and she laid down right after eating and the food was too heavy for body to digest it.
So we are adjusting,making the food even finer and walking after the meal to encourage her body to start the digesting process...a one step forward,one step back process.
Its 7:54 pm Wednesday
Once again light snow is falling outside...its in the 20s and I'm wearing a Grand Valley State hoodie to stay warm here upstairs.Derek is sleeping in his Christmas bed....Lori is getting ready to watch American Idol. So far all is good.
Monday morning saw us back at the infusion clinic for hydration...our guardian nurse Mel was once again there and waiting for us. Back we went into Chair One with a heated blanket. We told Mel about what Dr. Johnston said about our case,she was pretty surprised and very sorry about it. The rest of the nurses all came by and said "hello" and wondered how we were. We chatted with Mel for about 20 minutes while her assistant Karen hung up the hydration IV drip.
Soon after Lori fell asleep and I surfed on the iPad. Two hours flew by as Lori got another bag as well. As we were talking about when we could come next with Karen,Mel said "Come tomorrow at 7 am,I'll be waiting for you." Karen nodded her head and said "Me too". That being set up,I put Lori back into her wheelchair and pushed her out to the car. Sadly,we both agreed that we'll be needing a wheelchair,Lori's legs are just too weak right now for any long term walking.
After our treatment,instead of heading home,we headed to JC Penny to get Lori some better fitting comfy pants. We have been keeping track of the downward spiral that Penny's has been in the past couple of years. Its really a shame as the stand alone store we shop at is just beautiful in its layout and the prices are just awesome.
But between the nasty court battle with Macy's over carrying the Martha Stewart collection and a huge layoff of several layers of middle store management,you are getting the feeling the Penny's is running out of time. Putting all of your hopes on a Canadian clothes maker that hardly anyone knows of is downright risky as hell. Which is a shame because the stores within the store concept is very charming to say the least. It does feel like a shopper is visiting several different shops while getting great prices. You just wonder if JCP managed to roll it out fast enough to make any difference.
The linchpin to their hopes for the spring and summer looks nice enough,its very colorful but is it enough to
you drop everything and rush out to shop it? Sure didn't look like it at our JCP store.
I walked in and noticed how they only had 2 cashiers up front while a line was forming up. The cashier who helped me get a wheelchair was very kind and professional. They used to keep the chairs upfront but I guessed they moved them back because I had to wait almost 10 minutes before someone wheeled one up. I wasn't upset,I felt bad because it wasn't the employee's doing,they just didn't have the staff anymore.
I went and got Lori and we went inside. We walked through a near empty store back towards the women's section. Once there we priced several comfy pants,the prices were good but the selection was a little thin.
We picked out three pairs and Lori had me push her to the clearance rack. Amazingly,we found three pair of pants that were half the price of the new ones. So I put the new ones back and got the 3 on sale.
We decided to stretch our little outing a bit as I pushed Lori around the store looking at the new layout.
We not only didn't see hardly any shoppers but also hardly any employees. The ones we did see,we could see the stress and uncertainty on their faces. We both know the feeling,we too have seen the companies we worked hard for close out from under our feet. Its very sad to say the least.
After picking up a nice work polo for 7.00 in the men's clearance,we headed up and paid for our things. We left the wheelchair at the front and I slowly walked Lori to the car and we headed home. That was about as much as she could do.
Tuesday morning we woke up at 6:00 am to get ready for hydration. As Lori got dressed,I ran down stairs,fed the cats,got fresh water for them and then prepared Lori's vancomyacin.
We left the house at 6:50 am and got there at 6:55 am. We checked in and then were told to go straight back to infusion. I rolled Lori down the hall...and saw Mel and Karen waiting for us. We were the only patients! They had come in early just for Lori...the normal start time is 8 am,we were very moved by this to say the least but hey,you can understand this if you have had the chance to meet Lori...*s*.
After hooking her up,the nurses and doctors held their weekly meeting in the room...it felt sort of strange to be able to sit there and hear how the clinical staff worked to solve any issues.
90 minutes later we were done and I took Lori home before heading to work. I asked her to call the diet specialist in Ann Arbor and ask about more food choices. This led to the request to stop by KFC to pick up mashed potatoes and gravy. I had my doubts about the gravy,I didn't think that was a good idea. But hey,nothing ventured,nothing gained...
I picked up the potatoes and gravy and headed home. We enjoyed our day and I prepped a very small bowel of the potatoes and gravy. We then took two Ativan pills before we ate....and after she ate,we walked a few laps around the house. Just when I thought maybe we had a winner,she got very sick. The gravy was a bad idea to say the least. She started crying but I held her very close and said it was okay. We are just feeling our way through this. I cleaned up afterwards,got her tucked in and warm and rubbed her feet.
Today was better,she drank two Boost (which is wickedly expensive!!!) plus a small bowl of chicken broth plus a 20 oz bottle of water,all which she kept down.
Looks like the trip to the Karmanos Center is off the board because our insurance doesn't cover clinical drug treatments. We are going to try and see if her employer will change this for us so we can at least get a chance at this treatment. While I have faith that we may get this,I'm thinking the partial bowel obstruction is what will hold us back from being considered.
The mail has become very important to Lori,getting cards is a major boost to her morale.We got three very cute cards from some incredibly kind people and I can't thank you enough for them!
If you are reading this and feel like dropping a card.....feel free to do so.
Lori Sullivan
45249 Lemont Road
Canton,Michigan 48187
Thank you very much for reading!
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