An Update and Reflections on Hospital Life

First, a quick update for those who want "the facts, just the facts". Mark and I are back at the hospital for chemo round 4 of 6. At this point he has gotten his Vincristine and his Cisplatin for this round. He will have two more days of chemo and then we should be able to head home Friday. So far, this round is quiet, although that is the norm for day 1 now that they have him on Emend and a steroid in addition to his regular nausea meds. We also so audiology this morning. This protocol requires Mark to receive a hearing test between every round because of the high likelihood of hearing loss that comes with some of the chemo drugs he's on. So far there had been no change in his hearing, but today he did show a "significant decrease" in both ears, more so in the right than the left, but only in the high frequencies. It is very common, as I understand it, for children on this protocol to end up needing hearing aids. If the hearing loss gets bad enough, they do adjust the amount of chemo, but we are not near that point yet. Otherwise, things are progressing "well".

Now, for some random thoughts...

Regularly spending multiple days at a time in a hospital is an interesting experience. I was reflecting on it this evening as I took a lengthy shower with no worries that anything was needing my attention elsewhere. There are actually a number of good things about this stays which act as a nice counter balance to the bad things. I think the good things boil down to basically two categories: more limitations and less responsibilities.

It may seem counter intuitive to speak of an increase in limitations as a positive thing, especially in our consumer-driven, always-wanting-more-choices society; but an increase in limitations brings with it a decrease in stress and time spent making decisions. When I am at the hospital, I have a limited wardrobe from which to choose. Of course, I had to make decisions when I packed, but once I'm here, I only have what's in my bag as possibilities for my wardrobe (which of my two pairs of jeans, which of my two pairs of pajama pants, which t-shirt to wear with my jeans). No sorting through multiple skirts and pants choices, trying to decide if I want to dress up or dress down today. I have what I have, and that's it. I also have a limited number of food options, which quickly shrinks to only a few choices if I want to be "good" (which I don't always want to do while I'm here, btw). There are limited options as to where to get food and when each option is available. This makes choosing what to eat much simpler. Thankfully the food here is very good, so low quality is never an issue; there is always something tasty to have. I also have limited options on how to use my time. Generally, I work if the laptop is charged, check emails if my phone is charged, stop everything if Mark needs or wants something, occasionally watch a show on my kindle (my current favorite is the show Numbers).  There is no cleaning to be done, organizing to be finished, food to be cooked, which leads to the other plus of being at the hospital. A marked decrease in responsibilities.

Here, when I want food, I order it, and someone else prepares it. When I am done eating, someone comes and takes my tray away. Our room is cleaned daily by the hospital housekeepers (who are amazing!). The nurses keep track of and administer all of Mark's meds. He is currently on ten different meds here in the hospital. For most of the month, he is getting meds every two hours, around the clock. This was something I was completely unfamiliar with before I had a critically ill child. I had no idea what life was like for families who had a child that struggled with something like this. It's a whole new world, where everything revolves around a med schedule. But when we are in the hospital, the nurses take care of it. Today I napped for almost five hours straight. I did not need to jump up and administer medicine (or find something for a child to do, or diffuse an argument, or tell someone to go back to quiet time - lol). And tonight I will sleep through the night while the nurses dutifully take care of all of Mark's needs. 

Now, this is not to say that I'd want to live at a hospital all of the time. In the morning I am awaken by the realization that if I don't get up and get dressed asap, I'll have to talk to a team of people who are not part of my family while still in my pajamas and without my hair brushed (I once realized at the end of one of these conferences that I had had stray curls sticking straight up from my head the whole time. when I noticed and tried to smoosh them back down, they started laughing). People come to your room at random times during the day for random reasons. And it never fails that if you have been waiting all morning for the doctors to come (after jumping out of bed and getting ready much earlier than you wanted), they will arrive precisely at that moment when you decide you can't wait one more minute to go to the bathroom/leave and get coffee/etc. Not to mention the greatest downside of all - not being with my husband and my other children. Our life is a lot to manage, but I love it, and no matter how many things there are to appreciate about being at the hospital, it will never outway being in my own home surrounded by the people I love the most.

God bless you all, and as always, thanks for reading my ramblings.

Sleep well.

Wendi