I feel like I have lived a lifetime since my last post, plunged back in to the nightmarish world of constant fight or flight, hospitals, sitting there alone as the only adult making decisions, so many unanswered questions, and that ever-pervasive feeling of helplessness at not being able to alleviate the pain of someone I love. At this very moment I’m actually writing while sitting in an ER room, waiting on a doctor to tell us next steps. I don’t know how much faith I have that this time they’ll be able to give us any definitive answers.
I won’t go into all of the medical details here. I don’t need to, and I do want to protect the privacy of my child. But things this past week have been intense. It started with having that feeding tube placed last Wednesday, which did NOT go as planned. We were in that room for more than two hours (typical is 10-30 minutes) all while I was being incredibly triggered. Besides determining that the worst sound in the world is listening to your child continually screaming in pain while you can’t help (although I did jump out from behind the barrier where they had placed me, grabbed one of the technician’s lead aprons without permission, and rushed out to be with her for the rest of the time), there were things about that procedure in particular that ended up being quite triggering for me.
We were at that hospital all day doing other procedures and tests, and it certainly didn’t help that my emotional state wasn’t great to begin with, there on my wedding anniversary. But the fact that it was an NJ tube…it was difficult for me to even stay in the room. I couldn’t help but recall that it was during an NJ tube placement for Kendall when the doctor accidentally cut him, and since he did not have platelets he started to bleed out, was literally drowning in his own blood, had to be forcibly intubated (without proper sedation), and it set in motion a series of catastrophic events that did end up contributing to his eventual death. All of which I was there to witness. I hadn’t made the connection before how much I associated his NJ tube with what happened afterward.
What I also hadn’t realized before this past week was how triggered I am by feeding issues in general. There was so much prolonged stress and anxiety over trying to get enough calories into Kendall month after month, and especially as he was literally starving for weeks at a time during two of his hospitalizations. There was the unbelievably heavy responsibility the medical staff put on me (and I put on myself) to get him to eat, since he wouldn’t even attempt to for anyone else.
There has been a lot of stress this past year in doing the same with my daughter, so much focus on what and how much she was eating as the list of foods she could tolerate (and only a few bites at a time) became smaller and smaller and her symptoms kept getting more severe, her weight loss continuing to alarming levels. And again, I won’t go into details about all of the mistakes and miscommunications and frankly failures that happened this past week, from doctors, the hospital, home health, my insurance, medical supply companies, etc., but it took me 48 hours after the tube placement to GET MY CHILD FED. It was ridiculous. This was a child, in critical condition, and feeding tubes are a form of LIFE SUPPORT. It took constant calling and fighting on my part and even driving across Utah to finally secure what we needed and get everything in place.
Then I had to figure out what to do once I had the supplies. (I was told more than once to “Youtube it.”) I am so grateful for my neighbor, a nurse, who was able to come over with another nursing friend late that night to help get us initially set up. There are still issues we’re dealing with with all of that, including learning AFTER the tube placement that I had been misinformed and my insurance would not cover ANYTHING related to feeding tubes. It all has to be out of pocket, and that amount doesn’t even contribute to our max out of pocket. While we don’t think that this will be permanent, our best case scenario is she will have the tube for three months and likely it will be closer to six. As of right now she is on a continuous 24-hour feed and receiving all of her nutrition through the tube. Ironic that I will likely pay more for her medical bills this year than I will for Kendall’s.
There have been other complications, many of them. Just this week (and it’s only Wednesday) we’ve been to Instant Care, to the hospital twice, to her pediatrician, been in contact with her gastroenterologist, and we’re now in the ER. Obviously compared to all of that this isn’t an especially important thing, but I have had multiple moments of sitting in my car or being in the shower and just crying over not being able to attend Education Week like I had planned and looked forward to for an entire year. (Although some of those tears were certainly for feeling so overwhelmed with not knowing what to do, how to help my child, feeling burdened with the sheer weight of everything, and needing to do so without Kenny or my mom here.)
I know, my life doesn’t look like it did before when I was able to attend classes for the whole week. And it ended up being a good thing that I already had this week off of work. Plus, I have been able to attend a few classes (some on Monday, after spending several hours at the high school trying to get accommodations set up for my child so she could attend her senior year of high school with her feeding tube; a few on Tuesday until she called me mid-day in a great deal of pain and I needed to leave and take her to the doctor; none at all today, and I don’t know what the rest of the week will look like). I also had to miss all of church on Sunday (we went, but had to leave suddenly even before the opening song to rush her to Instant Care). All that on top of having school start for my four children (three different schools) yesterday.
This past week has forced me to look very hard at some things in my life, needing to decide on a game plan for going forward since I am THE parent and IT HAS TO BE ME doing all of the medical things for and with my child. We’re looking at continual care going forward, many doctor’s visits, and who knows what else. None of that is conducive to my working full-time. I don’t know if I even could have done so physically, anyhow. This Covid fatigue is still a very real thing for me. It’s been extremely evident when I’ve been at Education Week, how difficult it was walking up flights of stairs (that I used to be able to run up), how slowly I walked between classes, how easily I got winded. So yes, some hard decisions I am trying to make about my family’s and my professional future.
It’s galling to think about how very hard I have worked the past 16 months to be able to keep my family afloat, pay EVERY SINGLE bill, grow my business, all while managing and pushing through my own health challenges, only to realize now that I might not be able to continue doing those things. Yes, I can see that there’s been a great deal of pride involved for me, my fierce determination to prove to the world that I CAN take care of my family as a widow. While I can readily admit that I need God’s help to do all of this, I don’t want to concede that that help may need to come in the form of others. It feels like I have already required so much help, had to accept that I simply couldn’t be the one to give my children rides to all their activities, volunteer at school, go to orthodontist or other appointments, be able to take care of or fix some things, etc. It also feels like I have already given up so many of the things that are important to me, Suzanne. Education Week this week was another blow there.
What a negative post this has been! (Not to mention a lengthy one – still sitting here waiting for the doctor.) Felt good to purge all that from my brain, though. I know that there are many things which are “also true.” I know that the week is not yet over, and I do intend to make arrangements so that I can catch a few more classes. I AM grateful for the classes I have already been able to attend. I know that I now have a much better “team” assembled to help me with my child’s medical and academic needs. I know that she is finally getting the nutrition and calories her body desperately needs. I know that the first day of school went well for my other three children. I know that if I feel prompted to make some changes with working, that even though it feels incredibly scary, I WILL be blessed. When I can step back and think about it, not be so driven by the emotions I’m flooded with at the moment, I do know that we’re going to be OK. I know it’s OK that things won’t look like how I wanted. I know it’s possible that they can (eventually?) be even better.
But in the meantime, I am only human. I don’t think it’s going to be, can be, a matter of grit and pushing through. I’m needing to accept that I do have human limitations, oh so many of them. There are some things here that I can’t fix, can’t change, simply cannot do on my own. But I keep telling myself that that doesn’t mean I am defeated. I’m sure there are lessons I need to learn with all of this. Heavenly Father knows what will ultimately be best for my family. That’s what I want, even if it means living through the painful parts to get there.
(This was written in the hospital, but I didn’t have internet access and couldn’t post it until now. Six hours later, we did make it home!)
