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!

Day 24 - 25...Progress!

Finally, Nate's had a little progress! He has, of course, been progressing all along but it's been hard for him to see it. The progress we've seen has been on the monitors and in the lab values. While these values are very notable to the doctors, they don't mean a lot to Nate while he's laying on his back in bed.  

The big obstacle this week has been that darn NG tube. They place the tube from the nose down to the stomach and hook it to suction to prevent stomach acid and bile from collecting while the stomach is asleep and can't drain into the small bowel. The last thing they want is for Nate to have nausea, and throw up with his big abdominal wound. It's irritating to the nose and throat, and can trigger a mean gag reflex. Nate's only been able to have ice chips since last Tuesday, and to say that he's desperate for a drink is an understatement. Every morning they measure the drainage, and every morning Nate has to hear, "Maybe tomorrow".

They finally clamped the tube yesterday for a test. They unhooked it from suction and limited Nate's ice chip intake, then after four hours they reattached it to see how much bile had collected. When they hooked him back up to suction, there was nothing there! That meant that his stomach had finally started to move and empty into the small bowel. They took out the tube, which made Nate so happy, but still only let him have ice chips. Dr. Lambert finally took pity on him last night and upgraded him to 'sips'. I don't think I ever saw anyone take a longer sip in my life! Finally, a little relief! He didn't have any nausea with the 'sipping', and was upgraded to a clear liquid diet. He even got his first meal tray today at lunch!

Nate never thought green jello could taste so good!

His white count dropped from 38 to 36, 30 to 28, up to 30, down to 27, now down to 25. It may not seem like much, but we'll take any progress no matter how small. They also took out Nate's catheter this morning, so that's a little more freedom as well. He's on "the list" to move up to the Oncology Floor, but it's still full so we just have to wait here in the ICU for a bed to open up.

Last night, our friend, Tami (who underwent the HIPEC procedure a week after Nate), was readmitted to the hospital and had emergency surgery similar to what Nate went through last week. I sat with her sister in the all too familiar surgical waiting room until 3:00 this morning. Luckily, they were able to clean her out, patch some leaks, and close her back up. She is currently our next door neighbor in the ICU. We continue to pray for her well being and speedy recovery.

Yesterday I had to drive into Boston to renew our car rental. Kind of a ridiculous thing to have to do, especially considering that all they did was check the odometer and made sure the car didn't have any damage. I'm definitely learning patience....and which lane to take at the toll booths.

Farmington Festival Days are going on back home, and I realize that summer is halfway over. We've never missed the parade with our kids! It's one month today since we arrived here. I always considered that our stay would be between three and six weeks, but I don't think I ever really believed we'd take the six week route. We miss our kids so much that it hurts to think about this time that we're missing with them. It actually makes my heart hurt to think about staying here another two weeks. I'm sure that we'll be able to look back on this and it'll seem like a short time, but right now it seems like eternity.

Nate's been through so much, but has managed to stay relatively cheerful. I appreciate so much about him, and realize what a blessing he is in my life. I'm learning a lot from him, and am thankful that I've been able to stay by his side. I realize that my entire family has given up their summer to help us make this possible, and I don't think I'll ever be able to repay them. My neighbors at home have taken on our yard, our house, our cat, and our church callings. We wish we could express the gratitude we feel.

Day 22 - 23

I wear my heart on my sleeve, I've always known that. I wouldn't say it's something I'm proud of, but I don't mind it, and it's just who I am. That said, thanks to all of you who reached out to us today. Dr. Lambert sensed the mood in our room this morning, and upon leaving us, called the missionaries and asked them to come for a visit. They made it to the hospital around 6:00 this evening and gave Nate a priesthood blessing. We're thankful for the comfort we received.

It was another long day in the ICU. Nate continues to make small steps in his recovery. The step he really needs to make is to have his stomach wake up so he can say goodbye to the NG tube that's he's had for nine days now. If his stomach starts emptying on its own, he can start a clear liquid diet. This would make a huge difference in his morale. All he wants to do is slam a glass of water.

It's hard to think that Nate is really only three days out from his most recent surgery. We want to count the days from the surgery last Tuesday, so it's tough to be patient. Each surgery begins a new countdown to recovery. After a surgery like this, it's expected for his bowels to stay asleep for three plus days. But, when the first surgery was nine days ago and everything is still asleep, it's easy to lose sight of the fact that Nate is really only three days out. None of the post op days even counted last week! It's frustrating.

His white count is up again today so they are watching that closely. He's still on antibiotics so we pray that they will help his body take care of whatever infection lingers. He also continues to get I.V. Nutrition that's meant to prevent his body from breaking down muscle.

He got out of bed twice today, and even walked down to the nurse's station. He had fans rooting him on the whole way. He's got quite a following here. The Surgical Residents absolutely love him! The Chief Resident commended him for the way he's handled this whole ordeal, and told him that maybe he needed to do a little "healthy yelling". Apparently, the surgeons here get yelled at quite often by their patients, but he said Nate's been nothing but polite. It does my heart good to see others recognize Nate's good qualities.

We're hoping that his stomach will wake up tomorrow so he can get some relief. We also hope to get out of the ICU, and up to Oncology where Nate doesn't have to be hooked up to all of the monitors. It's a bit quieter up there, and the nurses don't come in nearly as often.

We are grateful for continued thoughts and prayers. We couldn't do this without the support we receive from all of you. Love to all.

Day 20 - 21

Not much to update for the last two days. Nate is still in the ICU. It seems he's found a new holding pattern. His vital signs and lab tests indicate that his body is relaxing, so the doctors seem pleased, but Nate isn't feeling much progress. He's still unable to drink or eat anything, and the ice chips have certainly worn out their welcome.

His white blood count is down from 38, to 36, and today to 28, so that's good news. We're waiting for his stomach to start draining on its own so he can get rid of his NG tube. At that point, he'll be able to start drinking some clear liquids.

Hoping for some good progress soon.

Day 19 - Surgery #4

Nate went down to prep for surgery at 10:45 this morning. He was anxious to get surgery #4 over with so he could start "healing with purpose", and not just laying in bed waiting for another surgery. As anesthesiology prepped him, three different doctors asked him when the last time was that he had anything to eat. Nate politely told the first two that it was last Monday. When the third one asked the same question, Nate just looked at me like, "What the heck?", so I stepped in and answered that it was 7 days ago, yes, 7 days. Nate's been very patient through this, and I truly don't know how he's managed to do it without getting grumpy.

They finally took him to the O.R. at 11:45, and started the surgery at 12:15. It was a long 2 1/2 hour wait until Dr. Lambert came to find me in the waiting room. Nate's white blood count was up pretty high today, so they were anxious to get inside to see what was going on. Dr. Lambert found a big pocket of infection just under the ruptured bowel. She was able to clean it out and place a drain so fluid and infection wouldn't accumulate. He's still on four antibiotics so he should be covered for whatever he might have going on.

Everything in his abdominal cavity is still pretty swollen, but they were able to close him up (sigh of relief), and pull his illiostomy up enough for it to function properly. They sutured his abdominal muscles together tighter than normal to allow for the muscles to relax as they heal. This causes a tight, painful feeling. Nate has to be really careful not to strain these muscles for the next couple of months. He's in a lot of pain, but I think it's controlled as much as possible right now.

Nate will have to stay in the ICU until at least Wednesday. They can take his NG tube out as soon as his bowels start working again. He might be able to have sips of clear fluids on Wednesday, but will be on ice chips only until then. He's starting to get a little hungry, so it's getting hard for him.

After he gets out of the ICU, he'll be transferred back up to the 7th floor Oncology Unit. At that point, he'll be working on advancing his diet, getting some strength back by walking, pain control, waking up his bowels, getting over the infection, and wound healing. As you can see, his I.V. pole is full again! We love to see them take things away, and we love to see a "skinny" I.V. pole! It's a sure sign that things are getting better, and we know it's coming!

Dr. Lambert thinks Nate will be in the hospital for another two weeks, and another week at the Hope Lodge. We can't wait to get home!


The silver lining to all of this...? I mentioned in an earlier post that during Nate's second surgery, Dr. Lambert was able to see that the HIPEC seemed to work on the mucin on the small bowel and that there was a little left on the colon that looked compromised. When she went in this time, she couldn't see any sign of cancer anywhere! It definitely makes this all seem more worth while. We're so thankful for this blessing. We don't have a great way of tracking Nate's cancer, so we've been anxious about what had to be left after the first surgery. It's a huge blessing that Dr. Lambert was able to get a 2nd, 3rd, and 4th look at the aftermath of the HIPEC.

We weren't sure how much of this information we should share because we are feeling pretty guarded about it. Nate definitely isn't out of the woods with this cancer, but we know how many of you have fasted and prayed on his behalf that he could have a successful surgery, and we wanted you to know that many of our prayers have been answered. We've seen so many blessings come our way, and we know that our (meaning ours and yours), combined faith have brought miracles. We want to share our victories with you and hope we can convey our gratitude to all of you.

Nate will still have to do more systemic chemo after we get home, and after he recovers for a while. It'll be the same regimen as before, but they'll substitute one of the drugs for a different one. The hope is that the chemo will kill whatever cancer cells still remain in Nate's body.

Nate's excited to be able to sit up tomorrow and possibly get out of his bed for awhile. We miss our friends, Tara and Andy. They were a great support for us during this particularly hard week. We love you guys!

Lazy Days - Day 18

Today was just a big long lazy day. I sat with Nate this morning for two hours before I left again to go to church, and he didn't ever know I was there. It was so great to see him resting, with his heart rate in the 60's instead of the 90's as it has been all week. When I got back to the hospital, he seemed so rested.

They've been giving the diuretics today, and his electrolytes are all out of whack now. He's been getting bag after bag of IV calcium, magnesium, and potassium chloride. He has so many IV fluids ordered that they have to hang one after another just to keep up. They are taking very good care to make sure he has everything he needs before going into surgery tomorrow.

The surgery is scheduled for tomorrow around noon. Praying for a successful closing of the wound, and stability and stamina for Nate. We're anxious to get this surgery behind us so Nate can focus on healing. I'll update as soon as I can.

Day 17 - Holding Pattern

Nate is officially in a "holding pattern"...not his favorite place to be. When they brought his wound closer together, they had to put tension sutures in his abdominal muscles to hold them closer together (before the muscles were just laying open). We were informed that the pain involved with tension sutures on such a large muscle group can be an extremely painful situation. Those muscles are also very strong, and if used too much could compromise the tension sutures, so they recommended that Nate stay in bed. He shouldn't even sit up.

He's completely tethered to the bed for another couple of days. He still has his NG tube (nose to stomach), his nasal canula for oxygen in his nose, his wound vac coming from his belly, his port is accessed, he has an IV in each arm, his continuous blood pressure cuff, his oxygen saturation monitor on his finger, four leads on his chest for vital signs, his catheter, and both calves are in pressure boots to help prevent blood clots. He also has his pain pump button, which is the only cord he's happy to have around. His nurse could see he was feeling all tangled up so she figured out how he could have one arm free. She switched his IV lines around so two of them run into his IV in his left arm. Now he only has a capped IV line in his right arm. Another small blessing!

The day here was a little gloomy, and a little long. We've never been Saturday TV watchers! Heck, we don't even watch daytime TV at home! This really makes us grateful for the blessing of a healthy body. What freedom!

They started him on TPN, or intravenous nutrition, today. He hasn't had anything to eat or drink since Tuesday morning, and that was just a piece of toast and a few sips of Gatorade. He's still not as thin as he got back in February and March, but he's getting pretty skinny! I need to feed that boy some ice cream! Hopefully he'll get to start on some clear liquids on Tuesday.

He still has four antibiotics running, and his blood cultures still show no growth. Thank goodness for that! He's also on Lasix, a diuretic, to help him get rid of as much fluid as possible to help the inflammation in his bowels decrease in preparation for his surgery on Monday. I am praying nonstop that they'll be able to get everything done and close him up.

Our dear friends from home, Andy and Tara, came to visit us last night! Before we came here, they felt like they needed to come out during our stay to visit and help us keep our sanity. They didn't tell us they were coming, but when we made plans to come home last Thursday they let us know that they had airline reservations to come here on the same day! I was deeply touched that they would do this for us. When Nate was readmitted on Tuesday, Tara sent a text that said, "We'll see you on Thursday!" What a blessing it is to have some familiar faces around to help remind us that there is 'normalcy' out there, and it's just waiting for us to get home! It's been a big boost to my spirits. I don't think I would have considered doing what they did, but I will now if the need ever arises. Thanks Tara and Andy...we love you!

Andy and Tara kickin' back in the Surgical ICU

Our kids are still  having a great time back home. Seth got to go back to Farmington to stay with his good friend for the week...I feel a teenager coming on! Emma, Sam, and Sydney are still in Idaho enjoying cousins there and cousins from Montana that just came for a visit to help provide a new distraction. My mom is definitely the "hostess with the mostest"! Thanks Mom!

Day 16 and Surgery #3

Three down, one to go. Nate's third surgery went very well. He went in at about 7:45 a.m., and came out at 9:30. Dr. Lambert came to find me in the waiting room and looked "lighter" than I've seen her thus far. It was encouraging to see her smile.

She was well pleased with the procedure, and was surprised by how much she was able to accomplish today. She anticipated that she'd just be able to wash him out and re-pack the wound. However, when she opened him up, the swelling had gone down enough that she was able to irrigate the abdominal cavity and bring the small bowel up close enough to the abdominal wall to start forming the stoma for the illiostomy.The bowel was still too swollen for her to make the "cuff" of the stoma, but it's about halfway finished.

She was also able to bring Nate's incision line a lot closer together. It was about 8 inches across (or open), and she closed it to about 4 inches across. This will make it easier to ease his abdominal muscles back together when they completely close the wound. He's still attached to the vacuum but will at least be able to sit in a chair and even walk around a little bit.

He will receive more diuretics over the weekend to hopefully help the inflammation in the bowel go down enough so they can finish the illiostomy, reattach his small bowel, clean him out one last time, and completely close the incision.

Dr. Lambert was able to pull an ER trauma surgeon in this morning who specializes in "acute abdominal injuries". He helped her loop the bowel up for the stoma and agreed with the plan of action. As "chance" would have it (I know there's nothing "chance" about it), he is on call in the Surgical ICU next week so will be available to help finish the procedure on Monday. We are so blessed to have such good care and I know we are where we need to be.

I believe our prayers are being heard, and answered.

As I was chatting with Dr. Lambert about the surgery, the complications and the frustrations, for our family but also for her, our discussion turned to faith and the purpose of tribulation. We both agreed that there is a plan being played out here, and that sometimes we just have to do our best, have faith, and then have patience. She then quoted Mother Teresa, "We are called upon not to be successful, but to be faithful." How appropriate, and how true!

Day 15

First, thanks to everyone for all the amazing vibes coming our way. We're thankful for all the texts and words of encouragement. My Aunt told me once that the more people tell you how strong they think you are, the more you start to believe them. I'm not sure if I think I'm strong, but I am starting to believe that we can endure this.

Nate continues to do well. The doctors still say how great he looks. The nurses still love having him because he's such a good patient. The wife still believes in him and is constantly amazed at his demeanor.

Today has just been a resting day. It makes Nate a little crazy to lay in bed all day. He can't even sit up. He's been sleeping better today, they changed up his pain meds so he gets a more continuous dose. He's a little more loopy, but better rested I think. He just had a blood transfusion because his red blood cell count is low, and they think it'll help him get through the surgery tomorrow.

He's scheduled to leave his room in the ICU at 6:30 and be in the operating room at 7:30. They will unpack the wound, clean it out, and hopefully be able to make the illeostomy, and close him back up along the original incision line. Our surgeon is considering 3 different possibilities with the procedure, so we pray that the choice will be clear when she gets into surgery. If the bowel is still too inflamed, they will try again on Monday. For the record, I vote for tomorrow.

Our dear friends from Farmington just landed in Boston, and are on their way to the hospital right now. They thought we might need a little love from back home. They were right! We're excited to see them, and are so grateful for good friends.

Please keep those good vibes coming! We want to come home! Love to all!

Day 14/Day 1

The past couple of days have been a little crazy. I actually wrote an update on Monday but I have no idea where it is. Not surprising considering my foggy state of mind. Monday was a pretty good day. We were able to relax and we went for a short ride in the car just to get out. Monday night Nate started feeling a little 'blah' so we put him to bed. We had his post op appointment on Tuesday morning, and as we were getting ready to leave, Nate's incision started to ooze some fluid. When we arrived at the appointment, we told our doctor about it, she took one look, and we knew it was bad.

She removed a couple of staples and used a Q-tip to break it open. Fluid gushed out of the incision. She got it cleaned up as much as she could and attached a bag to let it drain while we figured out what to do. She was pretty sure that Nate had formed a fistula, or a hole in his intestine. She called for the ambulance and secured a bed back on the Oncology Unit. The ambulance arrived within 20 minutes and we were off for our .7 mile journey to the hospital.

Nate's 2nd Ambulance Ride...still no lights.

Nate was admitted to his room where he started drinking contrast for his upcoming CT scan. They started a new IV line and accessed his port. He received bolus IV fluids and 3 antibiotics were started. They drew 3 separate blood cultures, and drew labs. We waited for 3 hours and finally went for the scan. After Dr. Lambert looked at the scan she was amazed that Nate wasn't more symptomatic, and just plain sick. He had a large amount of intestinal fluid that had leaked out of his bowel into his abdominal cavity. He was starting to fever and get the shakes.

Nate had a fistula, or a hole that developed somewhere in his intestine. It looked like it had formed a few days earlier, probably during the time Nate had the ileus. It was most likely that the leak was coming from the anastomosis, or the spot where the bowel was reattached during his surgery two weeks ago. She was frustrated because she felt like the anastomosis was an ideal reconnection. She was worried about our timeline and getting us home, but didn't want to make decisions based on that. After she spent a minute assessing Nate, she made the decision that he needed to have emergency surgery. He was getting warmer, and had started throwing up.

Needless to say, we were so discouraged. It was really scary to think about what had been leaking into Nate's belly. The infection risk alone was so concerning. The decision was made a little after 9:00 p.m., and they came to get him at 9:20. We only had enough time to talk to each of our children and our parents. The plan was to get in there, find the hole, clean up the abdomen, and make an illeostomy, which would allow the bowel to rest and heal for the next few months. She thought it would take 2 or 3 hours.

At 10:00 I said goodbye and went to the waiting room. I'll admit that we were both more scared and discouraged than we've been to this point. After a very long 3 hours, Dr. Lambert came out with the news. They had to re-open his entire incision.There was a lot more fluid than she anticipated so it took longer to clean him up. She found the hole, and it was in the anastamosis as she expected. When Nate had the ileus and his bowel filled up with air, his bowel twisted upward trying to find space to expand. When it did this, it put tension on the bottom of the anastamosis and popped the stitch out. Because it had been leaking fecal matter for so long, the bowel was really irritated and inflamed. As a result, she wasn't able to stretch the bowel far enough to create the illeostomy. Instead of closing him up and risking the integrity of the skin and tissue around Nate's incision, they packed the wound, attached a vacuum, and left the wound wide open.This is considered to fall into the 'major' complication category of complications associated with the HIPEC procedure. He's officially in the top 1/3! I'm starting to think that Nate is really good at beating the odds!

Nate was admitted to the ICU at 1:30 a.m., and I got to see him at 2:00. He was so stable throughout the surgery that they were able to extubate him in recovery. Dr. Lambert said that his body, his symptoms, and how stable he was defied all medical logic. She said he was as strong as a horse. Seriously, it's so crazy. This afternoon, Dr. Carroll, the Chief Resident who's been following Nate under Dr. Lambert, stopped by the ICU to check on Nate. He said something like, "In an earlier time you would have been a king, my friend. You would have been able to defeat all your adversaries." He said that he's never seen someone with a fistula do as well as Nate. He said they were usually really, really sick. This is another gift Nate's been given to help him deal with this nasty cancer. I'm grateful. I just hope he can get a break really soon. We feel like we're back to square one.

The plan is for Nate to rest as much as possible until Friday when Dr. Lambert will take him back to surgery. She will unpack his wound, clean it out again, and try to make the illeostomy. If everything is still too swollen, they will re-pack the wound, put him back on the suction, and leave him in the ICU until Monday when they'll try again. If they can't do the illeostomy on Friday, the surgery will be about an hour. If they can do the illeostomy it will take about 2 hours. We are, of course, praying for the least invasive route possible, but trust Dr. Lambert's judgement completely.

We actually had flights booked for tomorrow to come home, so that was a major portion of our discouragement. We miss our kids so much. This setback could cause us to stay for up to a month longer. We know we're in good hands, and are willing to do whatever it takes to get Nate healthy, but we want to come home so badly. It'll be 3 weeks tomorrow that we left home, so it really would've been amazing to get home that quickly, but we were so close!

There is a silver lining to all of this. Dr. Lambert was able to get a look at the effect the HIPEC had on the cancer. She said that she couldn't see any of the mucin that covered Nate's small intestine, and that the small amount of mucin that was left on his colon was completely compromised and it looked like it was breaking down. She said from a cancer stand point, it looked better than it did two weeks ago when she closed him up.

I know Heavenly Father is directing this whole thing, and I know he's mindful and aware of us. I'm thankful to friends and family who remind me of this during these hard times. We truly feel love from our doctors and most of our nurses :), from friends and family back home, and from all of you who let us know you're on our team.

That brings us to tonight, and the Fourth of July. We are in a little cave of a room with no windows where we wouldn't know if it was day or night, and the temperature stays at a cool 62 degrees.  We're sitting here watching the Charles River (Boston) Fireworks on our little ceiling mounted TV. I don't mention this to complain, but to tell you that despite the unfavorable circumstance we find ourselves in, Nate remains Nate. (I did get his permission to share this picture. Granted, he is on a good amount of narcotics. Hey, I need some entertainment too!)

Nate "raising the roof" to Cool n The Gang, 'Celebrate', as it's synched with the Fireworks

 

I do love this man!

Happy Fourth of July!