We were fooled into thinking life was improving when Jellybean was released from the hospital the day before Thanksgiving. We even managed to have a lovely Thanksgiving meal with both families here at the house. Unfortunately, the universe went right back to piling on the stress.
Episode 9: The NG Tube
Jellybean was released from the hospital with an NG tube and a feeding pump, with instructions that he be fed precise amounts of milk fortified with precise amounts of formula every three hours, like clockwork. So, no sleep for us. Trying to coordinate these 8 feedings (two of which include giving medications), with pumping, sleeping, and taking care of a toddler is not easy. Between getting everything ready for the feeding (warming and fortifying the milk, priming the pump, getting flush syringes, preparing for a bottle-feeding with gavage of the remainder) and cleaning everything up after (rinsing the feed bag; washing bottles and syringes, etc), feed take 45 minutes to an hour. By the time we're done, we're less than 2 hours away from doing it all over again. Needless to say, getting anything done is hard. Very, very hard. In addition, we have to change the tube weekly at the latest--more frequently if there are issues or he pulls it out. I hope you never have to experience shoving a tube through the nose and down into the stomach of your screaming 1-month old. Just sayin'.
Episode 10: Miss Kitty
In the midst of getting Jellybean home and trying to negotiate a new schedule while sleeping in tiny increments, my 16-year-old cat, who I got in college when she was 10 weeks old, died. It was peaceful (thankfully), but traumatic and unexpected.
Episode 11: The Toddler
One Sunday evening, after the local urgent care was closed, my three-year-old begins shrieking in pain every time she went to the bathroom. Nothing for it but to head to the ER. A relatively easy fix with a single prescription, but definitely an added stressor.
Episode 12: The Car
Phil was off in Tennessee officiating his mentor's funeral while his car was stuck in the garage because the battery was dead. A friend was kind enough to send her husband over to jump the car--problem solved. Or not. A mere two days later, the car was dead again. So, after returning his rental car from the trip to Tennessee, we jumped the car again and took it to the dealer where we got to purchase a new battery because, you know, we needed more unexpected expenses on top of everything else.
Episode 13: Advent
So, here we are in the bright, cheerful run-up to Christmas. Not. Honestly, the holidays can bite my bohiney. This is one of the church's two busy seasons and Phil has to get back to work in earnest. I have another month until I'm supposed to return to work (how, I haven't quite figured out yet--we haven't found someone to watch Jellybean and he can't go to daycare--maybe this should be it's own episode), but with Phil back at work, I'm going to spend my days taking care of Jellybean and not getting much else done. What else needs to get done? Fighting with the insurance companies and drug companies.
Episode 14: Insurance
First, there was the long involved fight to get Jellybean added to my insurance. I turned in the paperwork to the employee benefits department in plenty of time, but for some reason, the insurance company only added him to the vision plan and not the health insurance. Once I discovered this, I called my HR person who confirmed with employee benefits that Jellybean was indeed on the insurance. Insurance continued telling the providers he wasn't. After more calls by me to both the insurance company and employee benefits, employee benefits finally called the insurance company and got things straightened out. Now we just have to wait for all the claims to get reprocessed. Then I get to do the regular monthly fight with the secondary insurer. Good times.
Episode 15: Specialty Meds
Lil' Bit is on two specialty medications. Today in the mail, I received a notice that her doctor must call the mail-order pharmacy and explain why she needs the medications or they will no longer be covered as of the first of the year. Nice of them to give me so much notice--with the holidays coming up and all. Then, I got home from a doctor's appointment for Jellybean to a telephone message from said mail-order pharmacy that Lil' Bit's specialty medication delivery has been delayed (it was supposed to ARRIVE today). I called them back and they told me that the delivery had not yet been sent and would likely not go out until tomorrow for (they hope) delivery on Wednesday, but it could be next week. Say what?! I was told that I could call back anytime (going through their automated menu only to then wait for a person every time, of course) to see if there was an update in the system regarding when the meds might arrive. I was also cheerfully informed that Lil' Bit's doctor had been notified that the meds would be late. I wanted to ask the customer service person what good that was supposed to do, but decided not to yell at her seeing as how she was simply the bearer of the craptacular news. *sigh* This is the second time that we have had trouble getting these meds and I specifically started requesting that they get shipped a week earlier than usual so that we didn't run out like last time. Alas, even scheduling them to be delivered early does not seem to get them here in time.
So, here's the thing. I am tapped out. I am sleep-deprived (although not as badly as I could be thanks to some very wonderful, helpful, generous people). I am behind on getting *important things* taken care of--like getting Jellybean enrolled in a special children's healthcare program, doing the monthly dance with the secondary insurer, or, say, balancing my checkbook for the last two months. I am running on empty. I don't know how everything is going to get done. I no longer feel like things are going to get better. I want to crawl under the covers and sleep for two days, emerge and do two days of nothing but problem solving, and then sleep for another two days. Then, maybe, I could face the world. Sadly, that's not an option. As my husband so eloquently said in his sermon last week:
Life does not line up neatly, events taking a number and waiting their turn, each crisis followed by enough recovery time. . . . [E]ach one of us has had times when too many things come all together, out of order, with no thought to our state of mental health or our levels of doneness. As if life had moments of trying to see just how much water our boats can take on before we founder or capsize.I know I previously said that God may have given me more than I could handle, but not more than my community could handle. Sadly, it feels as though God took that as a challenge rather than as a compliment to the wonderful community in which God placed me. So far I have managed to tread water, getting by with a lot of help, but it feels like every day there are bigger waves and more sharks in the water and I am weaker and less capable than I was the day before. I hate this feeling of powerlessness, of weakness. I need some light. Some good. Some breathing space to give me hope. Before my cup runneth out.