I'm really starting to hate calendars. I spend way too much time staring at mine and scratching my head.
Like everyone, we have normal life stuff that gets overwhelming at times. Kids's activities, doctor and dentist appointments, scheduling home repairs, and social engagements. Throwing a week long hospital stay into the mix every six weeks has complicated that more than I could have ever imagined.
Christie works nights, which works well for us usually. She works while we sleep, and the wee hours are generally non-eventful. She's home sleeping during the day so that if I need her (like the time the van got stuck in the snow, or if one of the boys gets hurt, etc.) she's home and can be roused to rescue us. We are currently a one car (van) family and therefore the boys and I aren't stranded at home all day without a vehicle since she only uses it at night. There are occasional conflicts, but friends are usually happy to give us a ride for late night events when she's working.
This is all fine until I have a hospital stay. During that week, she either has to be off at night or the boys have to stay with friends if she works. This requires careful planning. It's extremely diffficult to plan around her work schedule since it's posted months before I can schedule my visit. This usually means a lot of trading shifts, begging favors, or simply missing work sometimes. She doesn't stay with me every night, but the first night is pretty awful and she feels like she needs to be there. Not to mention she often has to work the night before my procedure, meaning she's been awake for close to 36 hours by the time she goes home the next morning. She's required to work at least three shifts per week so if my visit is from Wedneday to Wednedsay, there's no way around this.
Our Foley friends have been so helpful in this regard, keeping the boys several nights that week so Christie can stay at the hospital. But we're also the proud owners of the most neurotic dog on the planet.
Ah, the dog. Adopted before we knew we would be doing any of this. The dog who, though loved dearly, nearly passes out from stress and fright on a four minute car ride. Who must be crated when we leave the house lest she eat one shoe per person who has left. The dog, who cannot be boarded because she has panic attacks when one of the boys spends too long outside checking the mail. She is the poster child for adandoment issues. So with the boys at the Foleys and Christie at work or with me, we risk leaving the dog crated for 14+ hours. Inhumane, right? So we either have to have someone come over to let the dog out occasionally, or stay here with the dog. Fortunately, we have friends who are willing to do both. So we have options.
As you can see, this requires planning each and every night that I'm admitted, down to the details. People are willing to help, but they have their own lives too. Committments at certain times of the morning or evening requiring the boys to be picked up or dropped off at particular times. Christie to be back home for the dog within a certain number of hours. It's not that it can't be done. It just requires an insane amount of planning.
Generally, we get everything set up, and the whole thing falls through the week before. The first time, the hospital wanted to change weeks because they didn't have a room for me. After much cajoling and frustration, they found a room. Changing days, even by a single day, affects everything. Childcare, work schedule, dog situation, transportation, etc. etc. etc.
The second time, we had to change weeks because no one mentioned that the cath lab would be closed on the 2nd of January. Last time, they neglected to inform us that my visits had to be no less than thirty one days apart, forcing us to change my stay from Wed-Wed to Fri-Fri.
This time, due to the never-ending, Antarctic, Jupiter-like ice-age that we're humbly calling "winter" here in Pennsylvania, family that intended to be here for my visit to help with the boys (thus allowing Christie to work some shifts during my stay) can't risk getting trapped in the polar-vortex and spending April trapped somewhere in the hills of Virginia. None of this stuff is purposeful, but it happens.
So we're scrambing. This latest fiasco, combined with Christie being out for surgery the last four weeks, has made it unlikely for Christie to be off work the night of my procedure. Meaning she would have to be up at six on Wedneday, spend most of the day at the hospital, likely get no sleep, and then work a twelve hour shift -taking people's lives into her hands- pick up the boys, and drive home. Alternately, she could leave me at the hospital and get some sleep before going to work. Is she really going to be able to sleep while I'm half an hour away getting a wire punched into my jugular vein and threaded into my heart? (Hint: no)
The complications of moving her schedule around and taking care of the dog may seriously mean we have to cancel this coming visit. The logistics of trading shifts this late in the game make it nearly impossible. Not to mention that everyone else who wants to help us out is in limbo, waiting on the unlikely call to confirm or deny a shift trade for Wednesday. If we cancel, I lose a week of 1A time which not only looks bad to UNOS, but could be crucial in determining candidate priority when I'm higher on the list. To complicate matters further, Christie will be changing units soon, meaning day time orientation for at least six weeks. It may be July before I can be admitted again. I don't even want to think about what that will look like to the UNOS board.
For those of you reading who are coming up on this season in your journey, prepare for it to be tough. Even when you have people to keep your kids, it's hard on them to be away from both parents so often. Prepare to be worried about your spouse's job security. It all plays a part, and there's really no provision for it. You just have to do it or not. I suspect most transplant candidates reading this are empty-nesters or retirees, which simplifies things to a large degree.
Thing is, I know this will become more difficult. We will reach a point where these visits aren't planned ahead of time, but dictated by my fluid retention and cardiac output. Then we'll be planning on the fly. Hopefully the boys are old enough by then to be home alone more, which would also solve some of the ridiculous dog problems.
Until then, we continue to fly by the seat of our pants. Never a dull moment. But some days it feels like my waistband is wearing out.
No comments:
Post a Comment