Once again it has been a while since I updated. I feel like apologizing even though many of you would probably tell me that’s silly. But I know your information on how Patrick is doing comes from this blog and my prompt updates have been scarce.
I reviewed the previous blog post before beginning this one and not much has changed. Patrick is about five pounds lighter but holding steady at 155lbs. He seems to be sicker in his stomach and intestines for longer periods of time. Even this morning when I spoke with him at 6:17am he was laying in bed sick, and he hadn’t eaten for hours. The sickness is 24/7.
He also came up with a new word - paingry. Instead of hangry, he gets upset and his temper short when he is in pain. Unfortunately he is in pain round the clock. At the shop he said he, “Puts on a good show.” I’m sure that’s how it is for everywhere he goes.
I suppose I haven’t updated the blog because in part, the paingry is more present when we are at home and it’s just us - Patrick and I and the kids. Patrick’s personality is a lot to handle on a good day. That effect is multiplied when he is not feeling well. It can be hard to live with when he is in as much pain as he is these days.
So the mentality in the house hasn’t been the healthiest it has ever been these last couple of months.
Patrick did have the beginning of his official evaluation in August. He had been told by several doctors in the past that he is an excellent candidate for a transplant and that he would likely be put on the list at a high priority. He was told by at least one doctor during this visit that he would recommend Patrick be a 6 on the list, which is actually the lowest priority spot, because Patrick “isn’t sick enough” for a transplant.
That was hard to stomach, no pun intended. Seeing him so sick day in and day out made me want to scream, “Of course he is!”
But he hadn’t yet had an appointment with a GI specialist, which the evaluation professionals were telling him was a big part of the process. Sending a patient into a transplant while they have this other enormous side issue is apparently frowned upon. Who’d’ve thought?
In the meantime we were also told the GI consult would be at least two months out for anyone available in Alaska, and six months out for anyone available in Washington. That was also not ideal.
The week before Patrick was set to go to Washington again in September for his follow up with the heart failure specialist Dr. Mahr, a couple things happened. Patrick was told he would have an artery examination to determine the health of his veins and arteries. And he was told he would have a heart catheterization so they could examine the state of his heart from the inside.
By the way, this was his first heart cath performed through his neck, which nearly made me vomit when he told me about the process. I can’t handle the thought of Patrick in extreme, descriptive pain.
But Patrick also decided to be a squeaky wheel, and he was able to convince someone in Washington to go to someone else, who contacted someone else, who talked to someone’s nurse, who managed to get him a 7:30am GI consult the day he was scheduled for the heart cath.
Miracle of miracles. I almost cried when he told me.
Patrick flew out with our pastor on September 27th, and as this was the second time this man had accompanied Patrick on a medical trip, I came to a funny realization that many of you may be able to find humorous - I was glad there was an adult besides me who got to experience 24/7 Patrick. And oh, the tales I’ve been told! I am selfishly glad another adult has been subjected to Patrick’s own personal brand of public joking/humiliation attempts. I even suspect in some ways Pastor Judah was inflicted with worse than what Patrick dishes out when he and I are together.
After all, when Patrick introduces *me* as his wife, he’s not joking.
Moving on…
The heart cath went off without a hitch if you don’t count the insufficient numbing the initial two numbing shots delivered. When the (not-so-affectionately labeled) horse needle started to go in, he felt it. He required a third numbing shot.
Must be that thick skin of his.
He said a nice nurse named Zoe tried to distract him from what was going on and he requested the monitor be moved so he didn’t have to watch what was happening. As he was laying on the table with a blue drape covering most of his head, and the monitor likely being positioned just so on purpose, she just covered his eyes. I love Zoe, and hope being party to Patrick’s personality was a source of enjoyment for her that day.
Before I forget - the GI consult. Wonderful doctor from what Patrick tells me, but completely unhelpful because of Patrick’s condition. The meds he would have recommended Patrick take are known to cause heart issues like arrhythmias. So Patrick’s unofficial official GI diagnosis - SOL.
But Patrick managed to have fun even on the way home. He maintained that Pastor Judah had given him a hickey, which is why he had to have a big bandage on his neck for 24 hours after he left the hospital.
Ah, sweet sweet Patrick. There is no end to your humor, is there?
Life isn’t always fun and games, though. He has seen an increase in heart events, where his heart feels like it’s going to go into v-tach. He woke up one night with a racing heart, 130bpm. He suspects the ablation is going to fail soon.
And as I said in the previous post, we have everything else to deal with - the shop/businesses, schedules for two public schools and one homeschool student, a toddler who isn’t potty trained so who isn’t eligible for most preschools (not that we would have the time or opportunity to transport him to and from school, anyways…)
Life truly does go on, even while such heavy things weigh on us. Patrick worries over custom knife designs, things in our home that need work, tasks he hasn't been able to do or has put off. I worry about grades, about feeding the kids healthy foods, about the dog, my own custom wood orders, making sure the shop is full of products to sell.
But as I sit here in the high school parking lot and type this out on my phone, waiting for the dual-enrolled homeschooler to come out after class, to my left is a young chokecherry tree. It stands no more than 8 feet tall, and is covered in yellow leaves.
As I watch, leaves fall. One here. A couple there. Seconds go by before another one falls. And another.
So slow. So unhurried.
Like that chokecherry tree, we all face seasons in our lives that we can't avoid; seasons that will come no matter how much we wish they wouldn't. Patrick and I are in one of those seasons. As ill-prepared as we were for the hardships that continue to befall us, I feel like most times we weather it with fairly level-headed competence.
After all, heart failure has been our third wheel for seventeen years. As overcome by negativity as we can get sometimes, our only true choice is to take life one step at a time.
This Sunday I walked through the book section at Value Village with my 11-year-old. We came upon a book published in 1965, and she begged me to buy it for her. Ninety-nine cents. How could I deny her?
On the way home she read from it, and it was nothing short of inspiring. We turned the radio off and drove in silence, listening to her struggle through some words, not understand some phrases, but peppering her reading with quite a few statements of, "I love this book!"
The book is called "And He Walks With Me." We found it in the Religion section, and she was immediately drawn to it. I can see why.
"And the stars!
Look, there's the Big Dipper,
Pointing ever northward.
There's Orion, bright-belted hunter!
And those two glittering diamonds
Are Venus and Jupiter.
Just think, our Savior's eyes
Beheld these very same stars
These very same stars!
So, in the twinkle of a thought,
We can bridge time and space
And among the stars tonight,
Meet His loving eyes."
As a nurse, my mom used to tell me how religion was often a big comfort to patients in the hospital, and their families. I can see that now as an adult, because we live it. And if God sees fit to drop little gifts into our laps like that book, it only serves to draw us closer to Him.
Thanks again to all of you for your love and support. Patrick’s next appointment isn’t until December 5th. Please keep us in your thoughts and prayers!