There's No Place Like Home

If you've ever flown into any airport, I'm sure you'll know what I'm describing here. Your flight arrives and you head down to baggage claim, you see a family or a group of friends watching the terminal exit, you see the signs and the balloons, you feel the buzz in the air as anticipation builds for a long awaited arrival, and you just keep walking because you know you're not (but wish you were) part of the celebration. Each time I've been lucky enough to catch one of those awesome homecoming scenes, I've secretly wished that I could be a part of it. Well, it was a steep price to pay, but my wish came true!

When we got the green light to come home, our good friend who flew us to Boston, offered to fly us home. What an amazing gift! Boyd, we will be forever grateful for the burden you lifted. He made all the arrangements, and we were on our way. We flew out of Logan International in Boston, and were whizzed right through security in Nate's hospitality wheelchair, saving us at least 45 minutes! One of my biggest anxieties of this whole trip was getting Nate home. Well, Boyd took care of that burden too. We took advantage of our priority boarding status, and to our great surprise, found our seats in first class!  Nate was so comfortable, and had all the leg room he needed! We flew into Washington D.C., and had a very short layover before we took off for Salt Lake City. Nate did really well on the flight, and even slept most of the way.

First Class Baby!

We probably should have been more tired than we were, but we were so full of anticipation that Nate walked right by the wheelchair that came to meet us at the gate and practically sprinted, almost, to baggage claim. What we saw there was a sight I'll never forget. Four of the cutest kids I've ever seen were holding homemade 'Welcome Home' signs and bouquets of yellow balloons. Our two little ones, Sam and Sydney, ducked right under the ropes and ran to us! Seth and Emma were right on their heels. What an overwhelming feeling! They looked so big, and grown up. (They also looked so tan...I could tell they were thoroughly entertained this summer.) Nate's parents were just behind the kids, and my parents also surprised us by coming down from Idaho for the reunion!

  A sight for sore eyes!

   

My parents and Emma

The reunion seemed like we were all moving in fast forward...it was one of those "Is this really happening?", and "Can we just freeze this moment?" moments. We were overwhelmed with gratitude, joy, and love. Like I said, it was a steep price to pay, but it was worth it!

Finally, together again!

 

 

The surprises weren't over either. As we pulled into our neighborhood, there were our awesome friends and neighbors lining the street and cheering for Nate! They had signs, flashlights, and yellow balloons on all the mailboxes leading to our house. Our house was completely lit up! Literally, they turned on our Christmas lights (yes we still have our lights up...bad diagnosis timing)! There were yellow balloons all over our yard, and tied on every tree and outdoor light. Our garage was adorned with 'Welcome Home' signs, and we had kids running along side the car as we drove! We were so surprised! What an amazing feeling. We were both in tears by the time we pulled in. Once again, we were overwhelmed by the outpouring of love.  

We couldn't spend much time outside with friends, Nate needed to rest, but it was something we won't soon forget. It was so good to go inside and cuddle, and hold our kids. I never want to go that long without their hugs and kisses again! While Nate was in the hospital, and especially in the ICU, we couldn't really manage a good hug or a snuggle. When he was finally free from all the tethers, I broke into tears when he gave me that first real hug. I hadn't realized how much I missed his touch, and I literally melted into his arms. I experienced that same feeling with my kids.

It's a little overwhelming to be back home. I realize that life continued on without us, and it's a little tricky to jump right back in. However, my friends have been bringing meals to us since we got home, and will continue to do so this week. What a huge burden they've taken from me! Our yard looks amazing, and we continue to learn of all the acts of service that went on while we were gone. The 12 and 13 year old scouts helped every week with our lawn, along with their adult leaders, and have set the bar really high! I think I needed someone back home updating a blog for me so I could know of all the service that was rendered on our behalf. I'm sure we'll never know of all that went on, and I know that we'll never be able to thank everyone enough.

Love from some of my cute MiaMaids!

Our family has been amazing. They gave up a large part of their summer to watch our kids, drive them back and forth, and just plain love them. Thanks Family!

Nate is doing really well. There's something about being home that does so much for the soul. He seems pretty comfortable, although with Nate it's hard to know because he still hasn't learned to complain. He's eating pretty well, and is getting his appetite back little by little. His wounds are healing well, and we have our first appointment with the surgeon here on Thursday. He hasn't made it back into work, much to his chagrin, but I'm sure he'll make it to the office by the end of the week. He's one determined man. He'll begin systemic chemo in the next month or so, but for now he will  focus on his recovery and work to gain some strength back.

I've quickly realized that I don't have the down time I had in Massachusetts, but I want to continue to update this blog as often as I can. I really hope the content won't be too exciting, and I hope to cut down on the medical lingo as well. Nate's been through so much, and we're both grateful for all of you who've followed him on this blog. We deeply appreciate the prayers, thoughts, notes, packages, support, and love we've received. Thank you for constantly, and consistently buoying us up. 

Day...Who Cares! We're Coming Home!

Actually, I can't resist. Today is Day 43 since we left home on June 14th, and Day 36 post op. Hey, I can't break the countdown now!

We had our last post op visit with Dr. Lambert this afternoon. When we walked in, one of the front clerks said, "Oh there you are Nathan!" Another said, "How are you today? Think you'll get the green light this time?" It's crazy...the staff knows us, and pretty much our whole story. The funny thing is that we've only had five appointments there (because we've spent most of our time in the hospital), and haven't really told our story...Nate's always been too sick to tell anyone anything before he gets whisked away in an ambulance.

Dr. Lambert came in and looked more relaxed than I've ever seen her. She was so pleased to see Nate looking so good! He did drop another pound, so he's down to 161, but otherwise looks amazing! She asked us if we felt comfortable going home, we said yes, and she said she did too. It was a rush of the most extreme relief I've ever felt. I wish I'd had my camera on Nate so I could've captured the look on his face. The only thing that would make this better is if we could bring Dr. Lambert home with us. We formed a wonderful relationship with her, and count her as a dear friend. She said it's hard for her to see us go, that she'll really miss us, but that she's very happy for us. She'll be out in Utah this October and we hope to see her then. We would love for our children to meet her. She's helped us get through a very difficult time, and has touched our lives in a profound way. We are forever grateful.

We'll miss seeing Dr. Lambert every day!

As if all the great blessings we've seen come our way weren't enough, we've experienced another little miracle. Nate has a drain inserted into his abdomen that continuously drains the infection that remains from when his bowel ruptured. He'll keep the drain as long as the infection continues to drain from it. Unfortunately, it's still putting out a lot of fluid, and one of the requirements for us to go home is that the drain has to come out. Dr. Lambert could let us go with the drain if we had a surgeon at home who was willing to follow Nate, but she was concerned that we might have a hard time finding one in Utah because most surgeons don't want to touch a HIPEC patient with a ten foot pole.

Dr. Lambert emailed our Medical Oncologist, Dr. Whisenant, to give him an update on Nate, and asked him if he had any thoughts on the matter. He immediately responded, and told her that there is  a surgeon in his practice that studied at MD Anderson Cancer Center who would be happy to follow Nate when we got home. It turns out that Dr. Lambert knows her! They trained together at MD Anderson. Because of this, we are able to go home with the drain in place, rather than wait here for the drainage to stop. This could be saving us weeks! Coincidence? I think not.

I know the Lord's hand has been over us throughout our entire journey here. We feel His love every day, and know that we've been carried much of the way. Having a surgeon to go home to is very comforting. I carry a certain amount of anxiety about leaving Dr. Lambert because I trust her with Nate's care. I'm so grateful that we'll have someone local who's willing to follow Nate, and coordinate with Dr. Lambert. We are truly in the Lord's care.

We fly home tomorrow from Boston. We have a short layover in DC, and arrive in Salt Lake City at 8:15 p.m. My heart races when I think of seeing our kids. I was so happy to hear their excitement as we told them of our plans. They've had no idea that we were even getting close, so when we told them we were coming home, then told them that it would be tomorrow, they were so excited!

We're grateful for the hospitality of the people here at the Hope Lodge in Worcester. Being able to stay here took an enormous amount of stress away from this whole ordeal. The people we've met here are wonderful. Everyone here has a story to tell. We've all experienced bits of heartache and bits of victory. I hope that I'll be able to figure out a way to give back to these amazing people.

I know I'm going to hit the ground running when I get home tomorrow, and I'm not sure I'm totally prepared. BUT, I am sure that I'm totally grateful!

Day 35 Post Op

We had a very quiet day today. Our visiting nurse came this morning to look Nate over. His wounds  all look really good and he seems to be healing well. He also felt well this morning for the first time since he's been out of the hospital. It's nice to see some progress, no matter how small.

Nate claimed the 'coveted' chair for his afternoon nap.

We thought it would be fun to take a little drive today, but Nate "wilted" after lunch, and ended up taking a little nap instead.

The picture doesn't do justice...a Florentine Canoli.

We had a very nice surprise later in the afternoon when a friend from the Worcester 2nd Ward dropped by for a visit! Yay, we had a visitor! Allison and her three cute boys even brought us a canoli from Mike's Pastry on Hanover Street in Boston. It was such a thoughtful thing for them to do, and it was great to visit with them. I'm so thankful for the good people we've met here. They've loved us from the start, and have made this adventure bearable. We'll never forget the generosity and love we've felt here.

We're slowly figuring out Nate's diet and meds. He actually craved McDonald's fries and a smoothie tonight! I consider that some serious progress.

I think he's looking pretty good!

 

 

 

 

We have another post op appointment tomorrow at 3:30 with Dr. Lambert. We're praying that she'll give us clearance to travel home. If Nate has another day like today, the chances are good! We are so homesick, and I think that getting Nate home will make a world of difference in his recovery. I get a little nervous about the actual travel, but we've been watched over this entire trip, and I know we can count on that to continue. Thanks for all of your continued prayers and support. We can't wait to thank you all in person!

Who Is That Guy?

"Who is that guy?" That's the question I asked today when Nate stepped off the scale and only weighed in at 162 pounds!!! Although he's a little bit on the thin side, he's still easily recognizable. All you have to do is ask, "How are you feeling?". True to Nate's character, the answer you'll get every time is, "I'm feeling great!" Dr. Lambert and I chuckle about it every time. He remains upbeat and is always ready with a smile to calm my nerves.

We had our Post Op visit (#3) today with Dr. Lambert. She paid Nate a very nice compliment when she told him that the nurses on the Oncology Floor told her how they loved being assigned to her two Utah patients (Nate and Tami), because they're both so kind and have such positive attitudes. Understanding that nurses care for all kinds of people, I consider this a huge compliment. It makes me feel so lucky to have such a positive influence in my life.

Our appointment went well. Nate's lab values all looked pretty good. White blood cell count is stable at 17. His red blood cell count in steadily rising. His kidney function is almost back to normal. While we wished that we could have received the green light to go home, we're thankful for Dr. Lambert's conservative nature. We know that Nate has a long recovery ahead of him, and respect the fact that she wants to see a little more improvement in the recovery.

Mornings have been pretty tough for Nate, so we need to figure out how to better regulate everything. There's a lot to balance with his meds, his diet, his activity level, and his calorie requirements. He needs so many calories for wound healing, red blood cell production, fighting infection, and gaining weight, but his stomach is still tiny and he doesn't have his appetite back yet so it's a tough balance. We have another appointment on Wednesday afternoon, and are just hoping for the best.

We have amazing friends and family out there, and know we couldn't make it through this crazy time without you. Thank you, we love you!

You Know It's Been Too Long When...

It's been great to be out of the hospital. Yesterday, Nate got to sleep in until 9 a.m.! The only trouble was that his morning meds were a little late so he didn't feel too hot. We did better last night. It's so nice to sleep by Nate again. We have two twin beds in our room, so I pushed them together before he came home so we could at least be a little closer. Nate's enjoyed being able to lay flat, on a regular bed as well.

He was sent home with orders for a visiting nurse to come see him here at the Hope Lodge. She checks his wounds, does an assessment, and brings any supplies we need. It's a little bit of a relief to have another pair of eyes on him. We have our first post-op appointment with Dr. Lambert Monday morning at 11:00. We'll get a bonus visit at church tomorrow if Nate feels up to going! We would, of course, love to hear that she's going to let us go home. But, at this point we just hope for steady progress. He has a long recovery ahead of him, and has gone through a lot of trauma.

Looking back over the last month is a little overwhelming. In some ways it all seems like a blur, yet there are so many specific moments that stand out. There is something about consistently feeling raw emotion that heightens your awareness, and wears you out at the same time. Much of the time for Nate has been lost due to sedation and the medication he's been on. However, some of the times he does recount are the times he wishes he could forget.

He's been having me remind him of the specific timeline, and it's made me realize that we've measured our time here in some pretty quirky ways. I decided to list some of the events and milestones of the last month and here's what I came up with.

You know it's been too long when:

You use up a whole tube of toothpaste in one trip

You haven't had anything besides ice chips for 12 days

You take 2 ambulance rides

# 2

# 1

You've had to fill the rental car up two times, and you've only driven to the hospital and back (6 miles round trip)

All the nurses know you by name

You get admitted to the same floor 4 different times, and stay in 3 different rooms

Nate "exercising" his lungs with the sprirometer

You've collected 3 incentive spirometers

You haven't worn shoes in 16 days

The clerk in the ICU recognizes your silhouette in the ICU door so you don't have to call ahead to get in anymore

You've had 3 surgeries in 6 days

The food service lady brings an extra tray whenever there is one left over

Your feet haven't touched the floor in 8 days

Nate and Ali, our favorite PCA

Your lunch meat goes bad before you even open it

Your favorite PCA (Personal Care Assistant) went on vacation for 2 full weeks and you were still there when she got back 

You use up a whole can of shaving cream

You have to extend your 30 day car rental

You haven't sat up or even rolled over for 7 days

Dr. Lambert performed all 4 surgeries

You don't have to use your Garmin to get around anymore

You've had 4 major surgeries in 20 days

You stay in the same hospital room two different times, and on two different floors

You have to renew your prescriptions

You are on a first name basis with the doctors, residents, and medical students

Nate and Jim (Dr. Carroll), Chief Resident Surgery

The nurses know that you're always cold and bring you an extra blanket

 

You haven't worn your own clothes in 14 consecutive days

You get discharged from the hospital 3 times

The nurses know exactly where you want your pillows packed around your body, and they know that you need five of them to sleep comfortably

52 of the 100 staples

You've had 100 staples in your belly, 2 different times (52 and 48)  

You've had 8 different IV sites, and a PIC line, not including the Power Port you came with

You get on the local Relief Society President's "list"

You haven't had any food in 13 days

You haven't worn your own clothes for 23 total days

You've stayed in 3 different ICU rooms

You have "groupies" who cheer you on by name as you walk down the hall

Nate and Katie

You know which rooms have the best electrical outlets (Genn and Nancy will get that one)

Your favorite nurse was 36 weeks pregnant when you met her and she delivered her baby 2 weeks ago, only 5 days early

You know where at least 4 Dunkin' Donuts are located

You've been to church 5 times

You know just where to stand so the ICU camera can't see you changing into your PJ's

Your Facebook timeline doesn't go back further than this "event"

You start measuring days in "Post-Op Days"

You're starting to get a Massachusetts accent

Skinny Nate at the Hope Lodge July 21

You end up with 6 of those pink hospital basins

You can drive straight to Target, CVS, and Walgreen's

You've lost 44 pounds

You've slept in a chair for 19 out of 25 days

You start stealing soap from the hospital

You've received 7 packages in the mail

You've started and finished a complete billing cycle on your credit card

HIPEC surgery...14 longest hours of 

my life

You've spent 23 hours in surgery

You've spent 23 hours in the surgical waiting room

You haven't seen your kids for 37 days

Emma, Sam, Sydney, and Seth...we miss you!

That is when you know it's been too long!

Day 30....One Month Post Op HIPEC

I just realized that it was one month ago today that Nate checked into the hospital for the HIPEC surgery. Unbelievable. How fitting is it then, that Nate was released from the hospital today! Yes, he's finally out of the hospital!

I'd love to give the rundown, but I'm exhausted and all I can think about is how happy Nate and I are today. We're so grateful for our blessings, and for all of our supporters out there. If you get a chance, check back tomorrow for some details. Love to all!

Day 29...Turning a Corner?

This morning I woke up to a great surprise! I received a big envelope full of happiness. My Mom helped our kids send pictures and notes to Nate and me. It's amazing what a difference a little surprise like that made.

We had a good day today. Nate had a good night sleep, and when I got to the hospital he looked so good! Everyone kept commenting on how good he looked. He ate all of his breakfast, lunch, and most of his dinner. What a difference a day makes! The steroids seem to help his appetite. It's a good thing too, because he weighed in at a brawny 169 pounds. Wow. Apparently, the last time he weighed that much was in high school! Between his mom and I, we'll fatten him up!

I immediately hung the kids' pictures in Nate's room. Nothing could've brightened our day more.

His labs looked better today. His kidney function looked a little better, and his white blood cell count was down from 26, to 19, to 18 today. Even though the kidney labs looked better, the kidney doctors decided they still wanted to do an ultrasound. Fortunately, Nate's kidneys and bladder looked normal. They feel pretty certain that he won't have lasting effects, and that his kidney function should return to normal at some point. We're thankful for this blessing!

Nate felt so good today that he got dressed in his own clothes! He even put shoes on. It's been two weeks since he's done either of those things. I'm proud of him and the progress he's made. He's endured so well. He is one tough guy, and I love him all the more for it!

Post Op Day 26, 27, 28 Ups and Downs

I promised that I'd post a picture of the view from our room of the State Mental Hospital and the old 'Insane Asylum'. Nancy was right when she said we might all have to spend some time there if Nate was here too long. I considered checking us both in Monday evening.

The current Massachusetts State Mental Hospital is the red brick building, and the "Insane Asylum" is to the right, just up the hill. It really is a beautiful building, but now that I know what it's purpose was, I can't help but think it's a little creepy.

Monday was a good day for Nate. He progressed well on his regular diet, but he could only eat a few spoonfulls before he felt full, and his appetite had not yet returned. Even though he hadn't eaten for so long (12 days), he's had to force himself to eat a little bit for each meal. Since he won't be able to eat his calories, he's still had TPN (IV nutrition) running around the clock to give him the calories he needs to heal and stop muscle breakdown. He was also still on four IV antibiotics for the abdominal infection, and was receiving replacement fluids for hydration.

Nate with all his drugs. The TPN is the big

 white bag.

When the TPN was ready to be changed, our nurse unplugged Nate from the IV pole, wrapped up his PIC line, and Nate got to....get ready for this....take a shower! He'd gone 13 days without one! We kept him as clean as we could, but there's nothing like a long, hot shower. It was the best therapy he could have received! He looked so good!

Nate's kidney function has gone down consistently since his 2nd surgery so they've been watching it closely. The renal doctors never made it sound like a big deal, but Monday evening our nurse told us that there was a new order for Nate not to have anything to eat or drink after midnight because he was going to have a kidney biopsy. Then she told us that cultures from his wound drain came back and showed staph and 'another bacteria', she couldn't remember which one. After all Nate had been through, and through all the ups and downs, I was not prepared to hear that anything else might possibly be going wrong. I took this opportunity to have a little 'freak out moment'. Yes, this is when I considered running up the hill to the old 'Asylum'.

My anxiety radar is at the top of it's game, and it doesn't take much to set it off. Nate was also a little devastated about not being able to eat or drink. It was way too close to his 12 day fast for him to even think about going back. He had also been put on oral meds earlier in the day so he knew he would be nauseous if he took them on an empty stomach. It turned out to be a very long night.

The next morning (Tuesday), the Chief Resident and his team came in for morning rounds and apologized like crazy for the miscommunication. Actually, they were less apologetic and more angry. The renal team failed to pass their orders and plans through the surgical team, and nothing had been approved by our surgeon. By the time Dr. Lambert came in, around 11:00, she had straightened everything up. The renal team was "over-enthusiastic" about their plans for Nate, and there would not be a kidney biopsy. The attending renal doctor agreed that instead of going to the extreme of a biopsy, they could start Nate on steroids and see if that made a difference. The hope is that the kidneys are just inflamed from all the trauma of the surgeries and infection, or from a reaction to a medication he's received, and that when the inflammation resolves the kidneys will return to normal function.

Since the culture from the abdominal drain came back, they now know specifically what they are dealing with so the renal team recommended that they stop giving all four IV antibiotics (since one of them could be aggravating the kidneys), and just start him on the one antibiotic that will cover it. Dr. Lambert also said that the staph growth was not unexpected, and should not be a worry because he's been on all of the antibiotics so the infections should be pretty localized by now. His white blood count also dropped from 26 to 19!

Phew! There's nothing like a communication breakdown to get the imagination rolling! We've definitely been living with a heightened level of anxiety, and I can't wait to have 'normal' anxiety.

With all of the IV antibiotics stopped, and since Nate was finally eating, they decided to put him on all oral meds! Nate couldn't have looked more relieved! He was so glad to be able to get up and out of bed without having to drag that pole around with him.

That's one full IV pole!

It's getting a little thinner!

Over the day, they started taking away one IV medication, and one pump at a time. Our measure of progress has become so strange!

Notice the IV meds? They're all gone! The pumps are unplugged, and Nate is freeeeeeeeee!

It was a great way to start the day. We went for a couple of walks. Nate had another shower. I took him on a walk, in a wheelchair, outside. His appetite even got going, and he ate half of his dinner! I think the steroid they started him on has given him a little boost. His nurse came in last night and said, "Who is this guy? I don't even know who you are"! She's been our nurse a number of times over the past three weeks and she couldn't believe the difference she saw, even from the night before.

It seems that Nate has turned a corner. Just hoping and praying that we can stay on this path now. There have been so many ups and downs that it's hard to believe there actually may be a light at the end of the tunnel...not a freight train...just a light!

Food, Glorious Food! Day 26

Nate has officially moved past the broth and jello phase of his diet! He's tolerated "drinking" his food reasonably well, so he was bumped up to a regular diet this morning! He even got to skip the full liquid diet...he's kind of an over achiever like that. It's been twelve days since his last solid food, and I think his stomach must be the size of an egg. It only took a few bites of rice and a cooked carrot to fill him up. But hey, he's moving in the right direction!

We have a great view from our new room on the 7th floor...of the State Mental Hospital. It looks just like what you would imagine it to. Long and tall, red brick building. Right next to the Mental Hospital, high up on a hill, is the old "Insane Asylum". They seriously call it that. I'll post a picture of it tomorrow...it's kind of funny. Nancy commented that if Nate has to stay here much longer, we'll all have to spend some time there. Umm...can I check in tomorrow?

Today I was able to go to church. One of the speakers talked about finding peace in adversity. A number of years ago, five of his children were in a car accident as they were driving home from a church youth activity. Two of his sons were badly injured, and became quadriplegics. He told one specific story where the trial became almost too heavy to bear. As the mother of the family struggled to find some peace in the situation, one thought kept coming to mind, "Count your blessings". She thought it pretty ironic that this is what came to her in her moment of complete meltdown, but it just kept coming, "Count your blessings". She finally relented, and began to realize all the small, yet positive details that kept the situation from escalating to a disaster. As she did this, she realized that she was finally feeling the peace that she'd longed for all day. He testified that as he's put this "process to find peace" into action, he's felt the peace he yearned for 100% of the time. He pointed out that it's very difficult to feel gratitude and fear at the same time.

I share that story with you because it really struck a cord with me. I think back over the last 5 1/2 months, and even though we haven't had a ton of 'good news' regarding Nate's illness and treatment, I can clearly see all the little blessings that have kept Nate safe, and helped us endure this trial. Many of you have actually pointed them out to us..."Can you imagine what would've happened if you were in the middle of the ocean on a cruise when Nate got sick?", ""It's a good thing that surgeon was on call", "It's amazing that your surgeon would pray with you before surgery", "Good thing a bed opened up on the 7th floor just in time for you to get discharged from the ICU", At least you were still at UMASS and not on your way home when Nate's bowel ruptured", "How lucky that your friend was heading to Idaho, and could take your kids to your sister's house", "How crazy that your surgeon shares your faith", "It was great timing for your friends to come visit you when they did". The list goes on and on.

Through this experience, I've learned so much. But above all, I've learned that we are loved by our Father in heaven, and that He knows us. He's aware of our struggles, and he sends angels to bear us up when the burden is too heavy.

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid.

                                                                                                           -John 14:27

 

Nate asked that I thank you all once again for the love and support you've shared with us. We are ever grateful.

Movin' On Up!

We have arrived! A bed finally became available on the Oncology Floor. Nate is happy in his new digs. No leads, no blood pressure cuff, no pulse oxymeter taped to his finger, no monitors, and no doorbells to get onto the floor! Hope we won't be here too long.

Nate's a good sport to pose for all my pictures.

Now we just need to purge his I.V. pole!