I have a goal to write more here this year. I am going to start with a week in review which I hope to write every Sunday evening just talking about the week we had with Nicole's PH journey.
Monday started out with me going to Walmart, Michaels and the Dollar Tree. I love the dollar tree because everything is a buck.... period. I have certain things I like to get there. I then went to Michaels as it is in the same plaza with the dollar store. I was looking for some stamping supplies as well as a couple of items for Nicole's drawing class for the new semester. I had no luck with finding what I wasn't able to find through Blink. The university only puts out the supply list two weeks before classes start. As of tonight, I still haven't found one pencil and have to order the other online and the spring semester starts tomorrow. I then went to Walmart because Nicole needed 1 1/2 yards of black, white and gray fabric for her drawing class... curious to see what this is for. I also picked up a couple other things. I had a Publix coupon for Yoplait yogurt buy one and get one free and it was a specific kind. The cashier said they don't take those coupons which according to their coupon policy that take all competitor coupons. A lady came over, I'm not sure what she was, but she took one look and said it's a Publix coupon we don't take it. I was like fine... I will give them my business instead of you which would have worked better if I had told him I didn't want the yogurt but Nicole was out of it and so I got it. The guy behind me in line was shooting me the evil eye. Had lunch at Wendy's which was nice as I love their asiago bacon chicken sandwich.
When Nicole changed her pump about 4:30 p.m. the silhouette which has the catheter attached was starting to lift off her skin and she had some sores underneath. She use to get these all the time for several months and we tweaked a bunch of stuff like changing the barrier wipe brand and letting the area dry more etc. She would need to change the site soon as she was on day 28.
On Tuesday, Nicole had an appointment with her psychiatrist. We were in and out of their quite fast which I was happy about and I am happy that it is literally five minutes from our house as opposed to the 20 - 30 minutes when we have to go into Orlando.
Nicole had decided that she would change her site today. I know she would have probably pushed it to Wednesday but she wanted to go to lunch with me on Friday so she opted to do it today. About two hours after she changed her site she started having pain and before the evening was over she was taking her pain medication.
Nicole also sent an email to the pre-transplant coordinator asking for another letter from their center stating why they were not listing her for transplant. I had done a rough draft of it and she made it her own. She also said that letters sent to other transplant centers with her records had not been included in the records that we had picked up and she wanted them emailed or faxed to her. At the time of writing this we haven't heard from anybody at the center.
On Wednesday, Nicole was in a lot of pain and I always try to help her as much as possible by getting her ice packs, getting her water, making her lunch etc. I always make brownie's for her also which is one of her favorite treats. It is painful for her to get up and walk as her infusion site is in her thigh. We spent the day at home. Monday, Wednesday and Fridays are the days that we are usually home and I can get a lot accomplished around the house if I don't let the computer etc. distract me.
This day marked the four year anniversary of Nicole's diagnosis. Nicole didn't mention it at all but I know she didn't forget. It is a very difficult day for all of us. It is sad to say but it is getting harder and harder to remember "our normal life" prior to that.
Normally on Thursday Nicole would go to rehab at the hospital but after a site change she can't go for about a week to ten days. I was spending a lot of time this week working on my speech I would be giving tonight at our PH support group meeting on how I keep Nicole's medical records/issues organized. I also had to get all the stuff together for the meeting. I was taking a whole bunch of 1 " binders and spiral notebooks that I had accumulated, hopefully, for people to take home. I was so grateful that a person who comes with one our members works at a school and took what was left behind to give out to the students that didn't have binders. I am going to give her some more also as I have a ton of them. Nicole wasn't able to go to the meeting as she was in too much pain and was more comfortable at home.
Friday started with me calling Accredo, the speciality pharmacy to re-order two of Nicole's PH medication (her Remodulin is one of them) this call always takes about 30 minutes. I always call when I open the last vial of Remodulin and I was going to be doing that on this day.
I was getting Nicole up when she takes her morning meds at 10:15 for our lunch date with Kathy who was coming by at 11:00 a.m. Nicole was going to tough it out and go because she wanted to see Kathy and she wanted to go to Olive Garden which is her favorite restaurant.
We had a wonderful lunch. My father-in-law had given Nicole this cane called the hurry cane which has like a claw on the bottom to keep it from falling over and giving the person more stability. Since Nicole's infusion site is in her thigh she will limp pretty good (until her pain is gone) and putting her weight on her leg makes it hurt. She used the cane for the first time and did a wonderful job with it.
It breaks my heart because I know how much she hates it when she knows people are staring at her. She is walking with a cane in her left hand and pulling her oxygen concentrator with her right. I know she sees the looks of people. I don't understand why it is no big deal to see an older person walking with a cane on oxygen. I guess because it isn't normal to see a young person or child like this people have to stare. I have been very close a couple of times of asking somebody if they had something they wanted to ask about my daughter because they kept staring at her but I refrained myself so I wouldn't embarrass Nicole.
Nicole enjoyed her lunch even though she was in pain and had to take a pain pill while we were at the restaurant. She didn't eat much of her lunch because she filled up on soup and breadsticks. That's okay we came home with another meal of left overs :).
Weekends are not very structured. I go shopping at Target and Publix and sometimes I will hit Staples as they are all together in the same plaza. I always enjoy spending this time with my mother-in-law. We have gone shopping on Saturday mornings since 1995 so she could spend some time with Nicole who came with me until she was about 12 years old or so. I really don't do much housework on weekends either.
On Saturday nights I go out to Denny's (usually) with my bff, Margaret, and hang out for a couple hours. We usually go to Aldi or the dollar store across the street from Denny's. This is always something that I look forward to so much and is a great stress reliever.
Today is Sunday and I spend time planning out my week of what I want to accomplish as far as organizing, decluttering and personal accomplishments as well as what appointments and other commitments do we have this week. Rick and I went to Home Depot to get some potting soil and I found a peppermint plant .... woohoo... I also went into Staples looking for the annual monthly/weekly calendar refill for the Arc planner but they didn't have it. I did get a couple of the uni-ball pink signa gel pens... I love them and they are only 50 cents.
I made a great dinner of white chili and cornbread. I filled Nicole's medications for the week in her daily pill boxes and I also filled her vitamins in her weekly pill box. I was mad at myself that I didn't have enough Zyrtec for the week and I had thought I had another bottle. I usually make a point to buy another bottle of something when I open the last one but it slipped through the cracks. I will have to stop by Walgreens on Tuesday after Nicole's counseling appointment and get some Zyrtec. I also am low on some of her vitamins which I will have to get either at Publix (if on sale) or Target. I really would like to get a better system for keeping track of refilling her medications and her vitamins.
I asked Nicole tonight at dinner if she was excited to be starting school tomorrow and she said yes. I will have to call the local art store tomorrow and see if they have the items that I am looking for and if so, have Rick pick them up on his way home from work as he goes right past it.
I am hoping and praying for a good week that is sickness free for all of us but especially for Nicole. Last night some kid was standing up in the booth and started coughing right behind me. Obviously, his mother hasn't taught him to cover his mouth. I worry so much and am so paranoid especially this time of year.