Sunday, Feb 28: Day Three, Holding steady

Charlie and I visited Dan this afternoon, and they continue monitoring his blood pressure and waiting for the new kidney’s filtering to fully kick in. Even though the doctors are saying that this is not uncommon, I think Dan is a little disappointed the kidney hasn’t already gotten up to speed. They may do another ultrasound tomorrow, or perhaps a nuclear imaging test, to examine the blood flow to the kidney. So far though, no dialysis needed. This is great news. Also good news is that his blood sugar levels didn’t skyrocket like the docs thought they might, so Dan doesn’t have to start any insulin injections.

We watched a movie together and helped Dan walk around the floor — his second walk of the day, and it didn’t seem to cause him much pain. He doesn’t have his morphine clicker anymore, but he is taking a huge amount of pills. I think he said he had already gone through about 30 before we got there, and the nurse came in with another 15 tablets during dinner.

Dan received a large white binder today, filled with instructions for when he leaves the hospital. We’re hoping he gets to come home Thursday. I’m not quite sure how well he’s going to be navigating the stairs, but his doctor said it shouldn’t be too much of a problem. He’ll need to adhere to a strict schedule of taking his medications daily and going in for lab work three mornings a week (I didn’t get through the whole book so I’m sure there’s other stuff that I’ll catch up on later). I immediately started planning an Excel spreadsheet to track it all. What a nerd. :)

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Saturday, Feb 27: Day Two, ICU and out of ICU

Visiting with Jeff
Visiting with Jeff

I visited Dan this morning and found him sitting up in his chair again. He said it wasn’t as painful as it was last night. He thinks they will move him to a regular room today! His potassium is still at 5, which means that the kidney still hasn’t fully kicked in with its full filtering power, so there is a chance he may need dialysis tomorrow.

Dan’s nurses here in ICU have been outstanding. It is so comforting to know that Dan is being cared for by a top-notch nursing staff. Dan’s nurse this morning found out that he wasn’t given a “kidney pillow” when he first arrived in the unit. It’s a small kidney-shaped pillow that Dan can use to kind of brace his incision site when he needs to move, or cough, or laugh. Although we are trying very hard not to make him laugh. His poor abdominal muscles are not going to let him laugh very easily for a while.

Our friend Jeff arrived to visit just before lunchtime. It was very good to see him. I noticed that while Dan is talking his blood pressure creeps up a little, which is good. It might be coincidence, but when I left I encouraged them to keep on talking. I think they were going to pull out Jeff’s laptop and get online, so we might hear something from Dan today. I have ordered a lightweight netbook (shhh, it’s a surprise for Dan!) that should come on Monday, so it’ll be easier for Dan to get back to his email and stuff.

I met Charlie and my mom for lunch, and then took Charlie back home to rest before heading back to the hospital to see Dan’s new room. Charlie has made a get well card for Dan, and a thank you card that I’m hoping we can ask the transplant team to send to the donor’s family.

We went back to the hospital this evening and Dan was visiting with Cynthia. They had just gotten him situated in his new room, so Charlie got to ask questions about the tubes and machines (very few are left, compared to Thursday night), and he assisted his daddy on a walk around the floor. We met the night nurse, and she explained that we need to pay particular attention to germs now that Dan is on immune suppressors. Dan must wear a mask when he takes a walk in the hallways, and we all need to wash our hands and keep them clean and away from our eyes, nose, and mouth.

Once Dan is out of the hospital, we will need to go back three times a week for labs. These labs will help the doctors determine the correct level of medications. The drugs that suppress his immune system keep his body from rejecting the kidney, but you don’t want to take more than you need or you will have unwanted and unnecessary side effects. So over time, he should need less and less, until he is taking only the minimum amount necessary to keep his body and kidney playing nice together. Dan will need to continue to wear a mask when he’s out in public, until the doctors tell him otherwise. So if you have a cold or a sniffle, we love you but please don’t come visit until you are well. :)

Charlie and Dan taking a walk. "I'll be dad's support."
Charlie and Dan taking a walk. "I'll be dad's support."
Charlie and Dan on the way back
Charlie and Dan on the way back

By the way, Dan said that he wasn’t in much pain during his first walk since the surgery. His night nurse (what an awesome and super smart lady!) said she was going to keep him walking, so there won’t be much resting in bed while she’s on duty!

Dan in his new room
Dan in his new room

More tomorrow…

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Friday, Feb 26: Day One, ICU

Today Dan was able to drink water (he said it was ambrosia) and eat some red Jell-o. His pain has lessened somewhat, and he was able to sit up in a chair for almost two hours. The kidney is producing urine, and the doctors are watching his potassium levels closely. If potassium is at 5 or lower, there won’t be any dialysis today. They are also watching the creatinine.

The ICU has four wings, and Dan is in the “D” area. You have to call the nurse to ask permission to enter, and then they buzz you in past the security door. The signs all say that you must wash your hands and wear a mask, but Dan’s nurse tells me that a mask is not necessary for now. No one under 18 can enter the ICU area, so Charlie will have to wait until Dan’s in a regular room. You can’t have a cell phone while you’re in the unit, which is very difficult because I feel very isolated without it.

Dan is hooked up to about fifty different lines and tubes. Most of them are connected to his IV drip, and some are for his monitor: blood pressure, heart monitor, oxygen level, breathing monitor. He has a central line in his jugular, which apparently looks more painful than it actually is. He is learning how to make fancy sine waves on the breathing monitor by taking huge breaths and letting them out very slooooowly. He is supposed to be breathing through this handheld lung-capacity tube thingie, ten deep breaths through it per hour, to move the little rubber ball past the 2000 mark. This will help to keep his lungs clear and open. He also has a morphine clicker, which he is using less today even though it’s there for him to use, not to conserve. He also has inflatable cuffs that cover his lower legs, and cycle on and off every few minutes.

He has a nice window that opens up into a small garden area, but the bed faces away from the window and he can’t really see out too well. There are patients on either side of him, divided by privacy curtains and sliding glass doors and windows. A nurse’s station sits in between Dan and the woman next to him, who is very very sick and has family flying in from all over to say their goodbyes. It is sad, but also heartwarming: she is surrounded by loved ones (they bent the two-person visitor limit, thankfully) and they played the guitar for her and sang to her for a while this evening. She is covered by a quilt and they were able to move her bed so she can look out of the window to the garden.

Dan’s doctors come by and tell him things are looking good. They are watching his blood pressure closely, because after all of these years worrying about it being too high, it’s actually on the low side. They want the blood pressure higher to increase the blood/oxygen flow to the kidney, which will help it to “wake up” and start doing a better job filtering the blood. They started Dan on some medication to raise the blood pressure, but they want to wean him off of it before moving him to a regular room. They are planning on upping the dosage a bit overnight, since his blood pressure goes down while he’s sleeping, and then decrease it in the morning.

Dan was able to eat some salmon for lunch, and a pork chop for dinner, selections from the “heart healthy” menu. He is feeling and looking more like his old self.

I stayed with him for a few hours this evening and watched him doze a bit, my eye on the monitors. The readings are actually very addictive — more interesting to watch than the TV. He has a blood pressure cuff on his arm that takes readings every five or ten minutes, but what I found most interesting is the little sensor they have in his right wrist. They’ve inserted it into his artery there, and it gives real-time blood pressure readings. So it’s kind of fascinating to watch that monitor and see the readings fluxuate when he’s sleeping, talking, and eating.

Things are going well, Charlie’s spending the night with my mom, so I’m heading home to get some sleep. (Oh, the potassium was right at 5, so they didn’t do any dialysis. Dan was relieved.)

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A funny thing happened to me on the way back from the hospital…

Okay, so it’s not really funny, as in comedic. It’s more a little bit of mystery and good vibes. On my way back home Thursday night after Dan’s surgery, I was driving eastbound on I-84 when I noticed a dark green pickup truck in front of me. My eyes wandered over to the vanity license plate, and my heart kinda skipped a beat. It said, “LAYNE”. Okay, you’re thinking: so what? Well, my dad passed away a little over a year ago, and his first name was Layne. It’s not a common name at all, and it’s probably the last name that I would have expected to see on a license plate. Even the spelling was the same. Cue the “Twilight Zone” theme. Except, it wasn’t a bad or scary vibe that I got at all. It was more of a little “Oh, Dad must be watching, and he’s sending me a little message of reassurance.”

I followed the truck all the way past the I-205 interchange, and then I went into auto-pilot, as you do when you’re driving a stretch of road that you’ve driven every day for years. When I looked around, the truck was nowhere in sight.

Totally true story, no exaggeration or changes for effect. 

Thanks for being our guardian angel, Dad.

That being said, I want to thank everyone who has been praying for Dan, for the donor’s family, for the surgeons, for a good recovery. There are so many, many people that have offered support over the past few days, I want to tell each of you that it really does make a difference.

(I still feel like I need to call my dad with updates on Dan…he asked about Dan’s health every time we spoke. He once told Dan “I don’t care what anyone else says, you’re 100% in my book.” And then he’d give his little Dad-chuckle. We miss you Dad.)

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Thursday, Feb 25: The day of the transplant

Recovering from surgery
Recovering from surgery

This was a day of frustration, waiting, anxiety, waiting, thirst, waiting, hunger, waiting, and finally, a transplant.

As directed, we arrived at the hospital just before 6AM. Dan got checked in and we were led to the Short Stay area. They got Dan settled while Charlie and I scoped out the hospital and got some breakfast. We were initially told that Dan should expect the surgery to start around 7:30AM. Then we got word that the airport was fogged in and the airplane containing the kidney and the surgeon couldn’t take off. That was the last news we had for a really, really, long time. We waited and waited and finally learned that the fog had lifted and the airplane had been cleared to take off. Yay! We were energized again. The flight was only expected to last about an hour, maybe a little more. So we waited. And waited some more. After more waiting and lunch for Charlie and me (none for Dan), we found out that the reason for the delay this time was that they were having trouble rescheduling the operating room and coordinating surgeons and anesthesiologists. One of the difficulties was that the surgeon had come back with both kidneys from the deceased donor, and they were coordinating two transplants to be done pretty much simultaneously. Which was good news for the two kidney recipients, but bad news from a scheduling perspective.

Let me just break in and mention that all of the nurses and the housekeeping staff from Short Stay are pretty much fabulous. They watched over Dan for hours, and helped make our stay as comfortable as possible in a place that most patients only use for an hour or two. One of them even let Charlie try her stethoscope. Imagine a curtained area wide enough for Dan’s bed and a chair, with an extra two chairs that were sort of in the hallway. No TV, no radio, no play area for the kids. No ice or drinks for Dan, even though he was parched. Just a lot of time for Dan to THINK about surgery. Luckily, I had Charlie to manage and distract me from too many worrisome thoughts. We explored the wonderful Healing Garden that they have just outside the lobby area, and Charlie ran and walked 16 laps around the garden, which equaled 1 mile according to the little sign. We toured the gift shop, played a stepping game where we could only step on the black floor tiles, and then the brown, and then the white. The big green tiles were elevators, where we would pretend to go up and down, to the amusement of several nurses. We planned ahead and brought the portable DVD player, where Charlie watched his set of Pokemon videos until the battery died. He played with his Nintendo DSi until he got bored with it. I didn’t even think that was possible. We thumbed through the pages of an educational toy catalog and picked out all the things we would buy. I even got to the point where I was searching my purse for makeup so I could let Charlie turn me into a clown (left the makeup at home).

Through all of this waiting, Charlie was a super star. He was quiet and patient, and was a great listener. He amazed me, he really did. He started to lose his cool a little at about 2PM, which is when we decided to get out of the hospital and explore the Oregon Museum of Science and Industry for a while. That is simply spectacular for a kid who got up before 5AM and had to wait in a hospital (one of the most boring venues a kid could ever imagine) for HOURS. Wow. (Or as late-night talk-show host Craig Ferguson would say, “I KNOW!!!!”)

On the way back from OMSI, I get a call from the Short Stay nurse, who basically said that we needed to get back right away if we wanted to say goodbye before they took Dan to surgery. We made it, with time to spare, because there was still a bit more waiting in store. This time the wait was worth it, because they finally found an anesthesiologist and he just happened to be the Chief of Anesthesiology. Score! So we had a great OR nurse who used to live in Denver, a great anesthesiologist who promised that Dan wouldn’t remember a thing, and a great surgeon, and a great nephrologist (the transplant program has done almost 700 kidney transplants — and the nephrologist is considered to be the best in the country). What an awesome team!

The anesthesiologist added a little Versed to Dan’s IV line, and Dan felt it right away. “You should have given that to me six hours ago,” he said, a little woozily. We said goodbye and gave Dan hugs and kisses, and then the nurse pushed him down the hall and around a corner.

I took Charlie home, took care of dinner, and asked my mom to stay the night with him while I returned to the hospital. (Thanks mom — you’re the greatest!)

By the way, the hospital is exactly 19.5 miles from my house, one-way. I’m kind of already wishing I had an apartment or hotel room close by. But then who would take care of the dog and cats? Too  complicated. I’ll commute. :)

I waited in the surgery waiting room, and just about 3 hours later (as advertised) the surgeon came out and told me that everything had gone well (yay!) and Dan would be in recovery for another hour, and then would stay in the ICU for perhaps two days. Once they got Dan all situated in his room, I was allowed in. He was really groggy and woozy, and I didn’t think he’d remember I was there (he does remember). He had some pain (“about a 5″, he told the nurse) and was holding on tightly to his morphine clicker. By this time it was about 10-10:30PM. Dan was now “The Man With Three Kidneys”.

Welcome to Kern Critical Care
Welcome to Kern Critical Care

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Wednesday, Feb 24: We get the call

My cell phone rang, and I answered it like any other call. I learned right away that it was John from the transplant center, and he was looking for Dan because he wasn’t answering either his cell or his work phones. “It’s the TRANSPLANT CENTER!” my brain was screaming, while my voice calmly told John that yes, Dan should be at work and did you try the switchboard  there because Dan works from two offices and they always know where he is. The call ended and I immediately felt my anticipation/excitement/worry/fear levels rise. Why didn’t I casually ask “So, do you have a kidney for him” before I hung up? Wondering why Dan wasn’t answering his cell phone, I brought up my text messaging app on my phone and typed out a few crazy-quick messages to Dan:

– You there? Transplant office is trying to get in touch
(No response)

– John is trying your work # again. Didn’t say why he needs you.
(No response)

– Hope you are on the phone with him now. Thinking of you and hoping for a kidney.
(No response)

Dan called an eternity later. We were both a little breathless. Yes, they have a kidney. WOW! After imagining this for so many years, the moment is really here. This is happening! Is this for real? Yes! All the questions: What’s the game plan? Where do we go? When do we go? Adrenaline, wheeeee! I suggested that he probably should go home. Working a full day didn’t really seem necessary all of a sudden. For either of us. I quickly took care of a few things, told my supervisor that the transplant was imminent and I’d be out for the rest of the week (so thankful for great bosses!), and left for home.

I picked up Charlie from after-school care. As soon as I told him that they found a kidney for daddy, he turned to his friends, face glowing and arms raised triumphantly, “My dad is getting a new kidney!!!” He was so excited. The kids knew Dan was sick because of the hospital visit a few weeks ago that got him started on dialysis. Charlie’s class had been learning about heart health, and they had each drawn a heart and veins and arteries onto their own life-size kid cardboard cutouts. Charlie’s was the only one that also included a perfectly placed pair of kidneys.

We learned that we would get a call before 10:00PM and we’d be told when to show up at the hospital. In the meantime, Dan told me about his phone conversation with John from the Transplant Center. There were two kidneys available, and since he was next on the UNOS list, he got to choose. There was also a third choice, which was to wait for the two unknown generous people who had volunteered to be tested as donors. One of the kidneys had a riskier health history than the other, which made the choice fairly easy for Dan. Even though he’d been hoping for a live donor, he didn’t feel that he should wait for a “maybe match” after a lengthy testing process, so he chose the less risky kidney. (We are grateful for Dan’s brother who came forward to be tested last year, but was ruled out as a donor. We are also very grateful to the deceased donor of this kidney, and her family, for this amazing gift. Words cannot express what a truly remarkable gift this is.)

When the Transplant Center called again, we were told to be at the hospital at 6AM. No food or liquids past 9PM. Crazy! This is really happening! I don’t know how Dan felt at that point, but it was a very surreal feeling for me. We had prepared for this moment, and thought about it for YEARS. It was so abstract, and now it was becoming real. Gears had been set in motion. Dan might have had his last dialysis session without even realizing it.

The rest of the night was spent packing a small duffle, trying to relax, and for Dan, doing too much thinking. That man can worry like no one else.

(Know that this has been typed with not a whole lot of sleep since Wednesday. I hope Dan can either comment on this later, to add his perspective, or  journal his own experiences. I write this to remember all of the details that are so fresh in my mind now, but will fade with time.)

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