Liam (Part 4-- Coming Home)

The Day Before Coming Home

A week is a long time to spend in the hospital for any reason. Spending it watching your son recover from neurosurgery takes you through every emotion, wearing you out physically too. For the most part, Darcie and I took turns staying with Liam, alternating overnight shifts. In the afternoons, the rest of the family would come and hang out at the hospital, mostly watching Liam sleep and try to rest. We played a game or two with him, but typically I would walk around the halls and grounds with the girls in little shifts, to keep the noise in the room down, to show them interesting little things I had discovered around the hospital, and to just get a little break and stretch my legs. This gave Darcie and my mother-in-law Louise a chance to quietly rest with Liam.

The first couple days after the operation were difficult. The pain and swelling increased. He had looked so amazing coming right out of surgery! His eyes were totally symmetrical, the incision was super clean, hardly noticeable. But within a day his eye had swollen completely shut—he looked like Rocky Balboa, or my brothers Rusty and Tim, when they had trick-or-treated about thirty five years earlier as ‘Rocky’ and ‘Rocky II.’ The doctor said it was to be expected, but it was still a shock.



Trying to Rest

It was a few days before Liam could even sit up. Through day six, he was being checked at least two or three times an hour, with the nurses making sure his lumbar drain was not letting out too much or too little fluid. This meant he constantly rested, but didn’t get much real sleep, with people in and out of the room continuously, and his needing to lean over so his back could be inspected at least hourly. He had a constant stream of tears coming out of that left eye—due to all the irritation from reconstructing his orbit, with the skin around his eye being stretched due to the subsequent swelling. Dabbing at his eye made the skin around it red and irritated, and he had constant headaches, but he continued to soldier on, never complaining.



While I hung out with Liam in the hospital, there were moments that hit me hard, filling me with dread, bordering on panic. The first was at maybe day five, when the occupational and physical therapists were working with him. This would have been the second day he tried to walk, with the therapists helping him stay steady as he walked, and me dragging all the stuff he was hooked up to behind the three of them. I knew he would be wobbly, after laying down for the better part of a week, having all that work done around his brain, and the constant tweaking of the pressure of the cerebrospinal fluid. I could not have known just how wobbly he'd be.

As he shuffled down the halls of the tenth floor, he was also supposed to look for post-it notes that were stuck to the walls. This multi-tasking would help him improve his cognitive abilities, which were really sapped from the surgery. It was a strange sensation to see him walk right by a note, missing at something he could easily have done at age two or three. After collecting all seven post-it notes, he would then try to arrange them to form a word (they each had a letter on them). It was really distressing to watch him struggle through the process, needing clues and hints until he finally got it. The word was ‘Tuesday,’ and it took a lot of help before he was able to get it.

With Darcie and Grandma Louise

They encouraged us to play games with him, to sharpen his mind and keep him progressing. We played trivia type games, and he aced those—he could answer questions and his long term memory was sharp. However, when we did things that involved short-term memory and working out simple problems, he didn’t do so well. It also really tired him, just wearing him out.

The therapists brought us a memory game—a deck of cards with about 30 pairs of different images that you turn over and mix up, then take turns choosing two, trying to find matches. It was made up of Shrek characters and images, and I thought I’d make it easy and we’d start with just 16 cards—four rows of four. I quickly saw that it was just too tough for him, as he was still pretty fuzzy with short-term cognitive stuff. I dropped it down to eight cards, then six, and finally four. Seeing him struggle to remember which two of four cards matched, only a second after I turned them over, was really heart-wrenching. I worried and wondered if he would have long term effects to his cognitive ability. Another challenging moment for me, with so much uncertainty, and a feeling of total helplessness.

But it was hard to be too down, watching all of the amazing things going on around me in room 23 on floor ‘10 North’. As I’ve mentioned, Liam was just a great little trooper. In spite of losing 14 lbs, having no appetite, and enduring serious bouts of really violent nausea and headaches, he didn’t complain. He was almost too polite to the nurses and doctors; we had to remind him to be sure to tell us if he was in pain, and not just say ‘I’m doing okay.’ Also, the tireless support and caring of Darcie was awesome to see, as she continually bounced between responsibilities at home and at the hospital. At least I got the week off of work!



It was wonderful to have so much of our family offering to come out and help however needed. Louise helped with so much cooking and laundry and cleaning and hanging out with Darcie and the kids! She assisted in ways I can’t describe; so much support for us when we perhaps were just to drained to think much about anything. It was a real blessing to have her around. We also received a few nice little surprise cards, notes and gifts from family and friends all over North America.




Doernbecher Children’s Hospital and everyone there also really helped us all stay positive and optimistic. I’ve talked about the setting and facility before—it is just beautifully built on the hillsides overlooking the South Waterfront area of downtown Portland. Because it rained most of the time we were there, I didn’t get outside much, except to get back and forth from the car when leaving or arriving. However, we did get to walk around the grounds a bit one afternoon when the weather was pretty mild—it is green and peaceful and just feels serene and ‘alive,’ a great atmosphere for a hospital.



Annelise and Corrinne

There are beautiful statues around the grounds, a big torch in front with an ‘eternal flame’ burning, and just really neat artistic and aesthetically pleasing touches throughout the buildings. As you enter the lobby of the hospital, there are dozens of painted wooden birds suspended from the ceiling; they are really interesting and you could study them for hours, with so many uniquely painted birds. There are captivating sculptures and murals and art pieces throughout as well, just really cool, particularly considering how many kids come in and out of the hospital, and the little touches that make it more pleasing to them (and their visitors!)




Annelise and Corrinne

On the fifth day Liam was there, the hospital staff told us they played ‘Bingo’ each week, with the game played on a lower floor, and kids all over the hospital watching and playing over the TV. When a kid wins, he calls the Bingo people downstairs over the phone, gives their name and the good news, is acknowledged on TV, and is promised a prize later in the day when the prize cart comes around. They played two games that Tuesday. Liam got a Bingo on the very last number drawn of the first game, and was the first to get a Bingo on the second game. A couple hours later, the prize cart came by and Liam picked out a board game and a copy of ‘The Princess Bride’ on Blu-ray!

The most impressive thing about the hospital, however, is the people. From the cafeteria to the pharmacy to the OR to the administrative and receptionist areas, the occupational and physical therapists, everyone was just fantastic. In particular, Liam’s nurses in the Neurosurgery wing (10 North) were literally amazing in every way.

Rianna was Liam’s nurse during the day for almost the entire time we were there (all but two days). She was totally attentive, and never made it seem like she was rushed or had other patients to tend to, even though she certainly did have other patients. Additionally, she was the charge nurse, essentially the boss, and the hospital was full for much of the time Liam was there. She was the most amazing caregiver, supporter, and advocate for Liam and our family, just completely perfect, especially considering all her other responsibilities.

On the two days that Rianna had off, Megan was Liam’s nurse, giving the same attention and care that we had been getting from Rianna. Megan was perhaps a bit softer-spoken than Rianna, but was every bit as attentive and precise and caring as Rianna was. Darcie kept telling her she looked like Anne of Green Gables. I’m not sure who that is, apparently it’s a girl thing, but anyway, she was just wonderful too.



Main Lobby at Doernbecher's

Our nurse every night was Laura. (What a nice situation, to have pretty much the same nurses there the whole time). Laura never came into our room without a smile on her face. Even her voice was smiley. I could not shake the feeling that I know her from somewhere, she was so friendly and familiar. I think Darcie slept less than I did at night, so she got to know everyone a bit better (plus, you know, Darcie was blessed with gifts of empathy and gab that I just was not given). Through her late-night conversations, she learned Laura was also a Mormon. Maybe that explained the sense that I knew her, but she is from North Carolina, and we couldn’t identify any paths that may have previously crossed.



All three of those nurses, plus the handful who did pop in from time to time when our regular nurses were on breaks, were all just incredible; we couldn’t have asked for better care. In fact, starting with the family doctor who Liam first visited almost two months ago, everyone we have dealt with has been wonderful. I cannot say for certainty we would have gotten lesser quality care had we stayed in Seattle, but I can say I can’t imagine our care being any better. It was all a string of so many blessings, with people doing their best to make our situation better in every way they could.



The Girls with Grandma Louise

The week Darcie and I spent with Liam and our family there is unforgettable. Watching him lose 14 lbs., watching him go from being able to eat nothing for several days, to a saltine or two, to a cookie and finally chicken strips the day before he went home... Seeing him go from laying down, to barely being able to sit up after a few days, to a short walk of a few steps that just wiped him out for the day… Watching him go from constantly sleeping and needing almost complete silence, to struggling to remember three simple words for a couple minutes, and finally being able to pick up his electric guitar, watching his eyes light up as he impressed the nurses with his chops. It was a whole lot of hardly any change, with the occasional little glimmer of improvement. It was a long week.



Today, seventeen days after Liam had his nine-and-a-half hour surgery, he is doing remarkably well. This morning, he got the stitches removed from his lumbar drain incision. Tomorrow, he’s got an appointment with the physical therapist, which we expect should go well. Liam is sitting up just fine, walking around the house, listening to music, and playing guitar and video games. Walking around outside tires him out a bit, but he is doing better and better each day.

This week is spring break, which is timed pretty well; he should be ready for school work and some more strenuous stuff by the end of the week. He is itching to do some hiking, and we might do a little walking on an easy paved trail this week. He’s also wanting to go play some guitar downtown, to see how much money he can raise for the Playstation 4 he is saving up for. It’s great to see him back home, being himself again, even if he is pretty tired, and still needing to take medication for the occasional headaches and his swelling.

Liam's Cousins in Utah

That week in the hospital, I got a lot of quiet time, giving me the chance to read, do a little writing, and lots of thinking and praying. I read a book called “The Faith of a Scientist” which was incredibly enlightening. It was written by Henry B. Eyring, father of a current General Authority of the Church of Jesus Christ of Latter-day Saints. It is a great read, and was so fitting to our situation, helping me see how scientific understanding goes hand in hand with religious faith and learning; how themes like evolution co-exist with the nature of a Creator. The book was written 50 years ago, but it reads like cutting edge insight published in our day.

I also picked up a $3 book of great American poetry at the hospital gift shop—what a find! It had selections from dozens of American authors and poets, lots of favorites by familiar names, and many whom I had never read or studied before. One new favorite is by Walt Whitman:



Miracles

Coming Home

Why, who makes much of a miracle?
As to me I know of nothing else but miracles,
Whether I walk the streets of Manhattan,
Or dart my sight over the roofs of houses toward the sky,
Or wade with naked feet along the beach just in the edge of the water,
Or stand under trees in the woods,
Or talk by day with any one I love, or sleep in the bed at night
with any one I love,
Or sit at table at dinner with the rest,
Or look at strangers opposite me riding in the car,
Or watch honey-bees busy around the hive of a summer forenoon,
Or animals feeding in the fields,
Or birds, or the wonderfulness of insects in the air,
Or the wonderfulness of the sundown, or of stars shining so quiet
and bright,
Or the exquisite delicate thin curve of the new moon in spring;
These with the rest, one and all, are to me miracles,
The whole referring, yet each distinct and in its place.

To me every hour of the light and dark is a miracle,
Every cubic inch of space is a miracle,
Every square yard of the surface of the earth is spread with the same,
Every foot of the interior swarms with the same.
To me the sea is a continual miracle,
The fishes that swim--the rocks--the motion of the waves--the
ships with men in them,
What stranger miracles are there?

Resting, Home at Last!

For obvious (and maybe not-so-obvious) reasons, this really resonated with me. There have been so many little miracles along this whole journey, from our fortunate choices of doctors and nurses, to the kind words and gifts sent by friends and family. Miracles of technology and timing and answered prayers and priesthood blessings. Miraculous feelings of comfort and peace of mind, given by the Grace and Light from God, and the Atonement of His Son.

We hope to see Liam being able to do everything he wants to do within the next month or two—another miracle. Like Walt Whitman, just about all I see are miracles! Thanks to everyone who helped us, through good thoughts, prayers, and acts of kindness, love and friendship. We’ll keep you posted on the real miracles-- and adventures-- yet to come!

To see how Liam's doing today, click here.