by Allison Moore | Oct 30, 2015 | Day by Day |
After last nights post, I got quite a few responses suggesting I should go to the Kindergarten Halloween parade. I allowed myself the pleasure, patting my own back the whole time. But honestly, it was a little boring after five minutes, all these parents trying to get pictures of their kids’ backs, all moving by in a blur from classroom to classroom. I didn’t stay till the end, but her bestie’s mom promised she’d send a group pic. When she did send it, they all looked pretty exhausted.
I realized I could use the same borrowed time to go home and pay some bills before driving up to the hospital. It was a little anti-climatic, but I’m really glad I got to be there for some of it.
Justine’s best friend in class, Eva. Her mom handmade the costume, and her little sister was a shooting star. Isn’t she gorgeous?
A mouse and Tinkerbell
her twin brother, Hook…and a cat
Justine’s fabulous teacher, Mrs. DeMille, who lost her father a few weeks ago. We love her and feel for her.
And that’s all I got. But I was there! And its great to have such good moments to remember in the evening when the morning seems a week away! Time and its changing value is a strange mystery indeed.
by Allison Moore | Oct 29, 2015 | Day by Day |
After spending the day with Vernon and Joe (our day-off dialysis is always Vernon’s most relaxing day off the week) I checked in with his doctor to find out about the Tuesday’s CT scan results and what the next plan of action might be. Sure enough, he has a clot in one of his veins, and though he is in stable condition at the moment, Dr. Dan and I agreed that we want to get on top of this right away. Vernon’s face looks like a pumpkin, its so swollen, and to me, it seems to have gotten worse since I saw him on Tuesday. You would think that a high tech scan would allow the pros to know exactly what to do next, but it sounds like a much more complicated matter than that.
Even if he is stable at the moment, this issue is unlikely to go away on its own…and blood clots can be extremely serious. So I was relieved when Dr. Dan had him sent to the ER this evening. At least he will be back in the hands of those who know what to do about it. I was told it would be fine if I am not there, that I could talk to the nurses and doctor over the phone if necessary, but I admit I’ve felt torn the past few hours. I decided to go to my barre class (regular exercise is stress-relieving and sanity-saving, but still can feels like a guilty pleasure sometimes when my family has other needs) and then have dinner with my parents, who just got back from a two-and-a-half week trip (it’s always good to know I can survive without their practical help, but life is a lot easier when they are near, mostly because I love the emotional connection.) I decided to go home and make sure Justine’s Halloween costume is ready for the school parade tomorrow and read her a bedtime story out of the “Body Encyclopedia,” her all time favorite.
In between, I’ve been making and taking calls and texts from different doctors. Vernon has been admitted overnight and hopefully, by tomorrow morning, we will know what they have decided to do. He is allergic to Heparin, a blood thinning agent, so that complicates the options a little more. I think nighttime staff has to be doubly creative as so many of the people they would normally be able to access are off the clock or asleep. Whenever I am asked for information, I feel like the “For Dummies” girl…my terminology is a little “personalized” or mixed-up over time, based on what I have decided seems important to remember. A lot of details are there, but they don’t always translate back to the medical field they way they were delivered to me.
It feels strange to manage all this from home. Until now, I’ve made it a rule to be at the hospital whenever he is there. But I know that he doesn’t actually NEED me there, the way that maybe he would prefer to have me there. I can’t even remember how many times he has been to a hospital, and I have no idea how many more visits he will have. But we each only have 24 hours in a day. I’m still taking calls at 11 pm, but I’m home with the kids. I’m blogging from my own kitchen. I have decided not to feel guilty about this, though I’m very aware of the way guilt tries to pull me toward it.
It’s hard because its new, this not being there for him like I have in the past. Maybe this will be the way things are for us from now on or maybe not. But Justine has her costume for the Kindergarten Halloween parade tomorrow. I will have to decide then whether I can stay to witness it with the stay-at-home moms and dads or if its more important to get to the hospital for Vernon.
It’s now 11:10 PM, I’m signing off on any more decisions till tomorrow. Just writing that feels really good.
Somewhere…over the rainbow.
by Allison Moore | Oct 28, 2015 | Day by Day |
Our friend Susan Logie volunteered to sit with Vernon during his dialysis today. This post is taken from a text update (with pictures) that she sent my way.
Among other ideas to keep his attention, she had brought in some music videos her son’s band had made. Vernon told her he loved them and asked for them again by name a few minutes later. This doesn’t surprise me…the music is great. Maki, Justine, and I are fans too.
At one point, Vernon was inspired to dictate a letter to Maki. Here you have it:
“How are you today? My good son, I am thinking as I watch a kinks video that you and I could for a band. And play live. What do you think about that plan? I think it would be very cool for us to do. What could the name of the band be? Could you think of some names please?
That’s to the point. Lots of love—Vernon”
(He opted to sign his own name, which I must say he did very well. I forgot to ask which hand he used.)
I’ll be up to see Vernon tomorrow, though some plans have changed. We have opted to postpone the swallow study scheduled for the afternoon as we still don’t have results from CT scan and nothing has been done to alleviate his edema. I am concerned that the swelling of his neck, etc. may make it harder to swallow. He’ll have a better chance of “passing” the test once this issue has been solved. It’s always something, but I think its wise to focus on the biggest issue at hand. This week, its the mystery swelling and the new problems that brings. Once this is solved, we can move on to the next.
by Allison Moore | Oct 27, 2015 | Day by Day |
As expected, it was a long day that started earlier than usual. I won’t go into it all. Vernon followed directions very well, and though I was out in the hall for the CT scan (with contrast.) I heard he was very receptive to the procedure, even remembering the doctor’s name on the way out. Hopefully, this will offer some easy answers to Vernon’s edema. One of the technicians later on relayed that Vernon had put on 3 kilos (6.6 lbs) of fluid since yesterday. I am also concerned that the swelling of his neck and throat will be problematic for his swallow study on Thursday.
Dialysis was hard, as he’d already been out for awhile. He was either fixated on getting a drink of water or convincing me to take him home in my car—the usual obsessions., but I notice they are becoming more intense by the day. But he has been very sweet and loving to me lately, repeating how he loves me and reaching for my hand. And today we had this conversation:
“When I go home, we can make our marriage better.”
“Oh? What do you think needs to get better in our marriage?”
“Me.”
(An army of creepy dialysis machines, poised for world domination.)
PS Today, I am grateful for my friend Nicole who drove down from LA to sit with me at the hospital (and then dialysis) just so I wouldn’t have to be alone.
by Allison Moore | Oct 26, 2015 | Day by Day |
Disclaimer: I have to check my phone-notes to update details properly—there are some medical terms that I may or may not spell correctly.
Vernon’s Dr. Dan sent me a text yesterday…something to the effect of: “Vernon’s edema is back. Can you get me in contact with his most recent surgeon, as per his suggestion to give Vernon C-T scan for venous stenosis.” Now, I doubt many of you get to use that in a sentence as easily as I just did! Up for the challenge? Someone give this woman a crossword puzzle already!
Amazingly, I found the surgeon’s name: Dr. Peck. Thank goodness I never organized and put away those growing stacks of bills and hospital notes….it was right near the top! “You are so good,” said Dr. Dan, and I smiled at my deception. If he only knew how badly I usually keep track of these things…well, good thing he doesn’t! I can’t even remember why he is allergic to Heparin (which I get asked about every time he goes to the hospital.)
Anyway, when I got to dialysis this morning, the nurse told me that Vernon’s arterial pressure was too low and his (new) central veinous catheter was beginning to clot. They would have to hold off on dialyzing him until they got the OK from his Nephrologist to give him a dose of Activase. When they finally did, it was time for me to drive back and pick up Justine. I understand he lasted the session without me. Excellent news. I did notice he was back to his closed-eyed mutterings and flopping from one side to the other out of discomfort, so I sure am hoping that all of this is connected and will soon be solved.
In the meantime, I’d been updating Dr. Dan and discussing with him whether these things were all connected. He told me that he had already talked to Dr. Peck (the Surgeon) about the situation. Dr. Peck told him that he had put a balloon in one of the arteries near the port, which had allowed Vernon’s swelling to go down in his face and left arm and hand. But when the vein had re-shrunk, the edema came back. So he would indeed need a C-T scan to find out if there are trapped veins elsewhere. By the time I got home, there was a message from one of the social workers at Mesa: “Vernon has to get this scan done before a dialysis session, so what mornings are good for you?” I told her, and she said get back to me in an hour or so.
When she called back, she told me we had an appointment for November 2nd. “Next week? Nope, can’t do it. I’m out of town and the plans can’t change. I told you my days for THIS week. This is the only week I can do. I never expected you were talking about NEXT week…isn’t this serious?” It was true.
Happily, she called back to say they’ll have a spot for him first thing tomorrow morning and he’d do dialysis just afterward, depending on how quickly he comes out of sedation. I should have used my excuse much earlier, if it works that efficiently. Note to self….
Now, on the subject of visiting the hospital (Hoag Newport, again) I’ll announce Vernon’s other big plan for the week: he’s going in for another Videoflouroscopic Swallowing Study on Thursday afternoon. Beyond the satisfaction of collecting a rare crossword-puzzle clue, its good to think that people will be praying for the best outcome for Vernon’s progress. If this study has positive results, Vernon might be able to receive some more Speech Therapy, which will help him with his swallowing skills and move him toward drinking and eating. When he is eventually off the feeding tube, he would be more eligible for discharge from the care home. (I’m not rushing the discharge, by the way: I am well aware of my deficiencies in nursing care…though I am slowly learning.) My least hope is that I’ll be able to legally feed him water without the fear that I’m slowly killing him.
So it looks like a lot of hospital time this week. I think back to another recent “hospital week,” and I recognize that I’m dealing with these things much better this round. Guess we toughen up. I have some theories on that that have nothing to do with “being tough.” These weeks have been a different kind of hard than before. When I figure how to sum that up, I’ll let you know. Rest assured, I am working on it.
On a gratitude note: I didn’t end up fighting with Justine this morning over what she was going to wear. It took a long time, but we worked through it without either of us losing our temper. I was exhausted by 9:30, but this alone was enough to give me a good day. Also, Maki has been playing Radiohead on repeat. These are some things make me blessed among women.
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