Where has the time gone? Truth be told, I have been working hard to catch up and move forward with life. One problem, there just doesn’t seem to be enough hours in the day for me to do all of the things I need to and want to do…like sleeping and blogging. Due to my lack of posts and scattered mind, I am going to revert to list format as a way of catching up on all of the events medical and non medical.
1. After discussing the results of Lucy’s urodynamics study over with both her urologist and Dr. R it was decided that we are going to have to “help” Lucy’s bladder empty. In other words, we are going to start straight cathing Lucy every four hours. Last week Tuesday we met with the urology nurse practitioner for an informative appointment on the in’s and out’s of straight cathing…pun totally intended. Technically, straight cathing isn’t very difficult compared to many of the other things that we have to do to Lucy, emotionally it is! As with all things, we will get used to it, it’s just going to take some time. As for now we are working on getting Lucy comfortable with the prep process, so far she is doing much better than any of us expected she would. On Wednesday, when our delivery of urology supplies comes from yet another medical supply company, we will officially begin the cathing process. At the present time, surgical options for inserting a drainage tube or pulling the bladder to the skins surface to create a “port" of sorts is too risky for Lucy and has a higher rate of infection. Straight cathing has the lowest risk of infection and is the least invasive of all of our options for emptying Lucy’s bladder. Since infection is what we are trying to avoid we are going with the option that has the least risk of it.
2. Last week was full of the usual things and then some. We officially started our new nurse on Tuesday, and so began the process of having her learn all that there is to know about Lucy and the rest of the gang. As you can imagine there is a lot to catch her up to speed on, but I have a good feeling that she will learn quickly. Nonetheless, it is a process of getting to know one another and how things work around here and as a result I am a little more tired than usual.
3. Over the weekend Drew and I, ok… really more Drew than I, accomplished a huge garage shelving project, way to go babe! We have been wanting to do this for quite sometime (five plus years, but who’s counting) and finally set forth and completed it! Several things were motivating us to do this, but the driving force is the need to make our house more handicap accessible. Lucy’s needs are changing, and as a result so is her need for a new wheelchair. We need to build a ramp from our garage into our house in order for her chair to be used indoors, hence the need to get all of the stuff off of our our garage floor and onto shelves. I love her current chair, it looks more like a souped up stroller than a wheelchair, but her medical needs have literally outgrown her chair. We hang all of her pumps and bags in one backpack off the back of her wheelchair. When they are full, the weight of all of those items can tip her chair over backwards if you are not careful. I have been putting off scheduling an appointment with wheelchair clinic mainly because I know that once we order her a new chair so comes our need for a handicap accessible van.
4. It’s the end of the school year and with that comes all of the end of school year festivities. It is bitter sweet, I am looking forward to having a looser schedule with the kids at the same time I am worried that things with Miss Lucy’s schedule are going to get more challenging with the kids being home. My busiest time of day is from 12 noon to 2:30 when we infuse meds, change Lucy’s TPN, and put Lucy to bed for the afternoon. This school year seems like it has gone faster than any of the years before, I suspect that I feel this way partly because of the circumstances of our life, but also our kids just seem to be growing up so fast.
5. Summer plans are being made, well…as much as we can plan anything in our lives. As we all know Miss Lucy can really mess with your plans in a wink of an eye, yet I
foolishly optimistically attempt to plan a few things. We are hoping to be able to attend the UMDF’s annual mitochondrial medicine symposium in Chicago next week. Yikes, is that next week already! Last year Drew and I attended this conference for the first time. In just a few days we were able to meet with and listen to some of the top doctors and researchers in the field of mitochondrial medicine describe what they know and are researching about the disease. In the mito world, this conference is well worth your time and money if you are seeking to learn as much as you can about the disease.
6. Drew is traveling this week and my mom is here to visit and help me with the kids. I never really get to spend anytime with my mom when she comes as I am always at the hospital with Lucy and she at our house with the kids. It is nice to be able to spend some time with her, even if the time we have to talk is late in the night.
Times up, I need to get the kids up and ready for school. I want to apologize for my lack of posting, and thank all of you faithful readers for all of your love and support, thoughts and prayers.
Tonight is preschool graduation night…I will post some pics soon.