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!

Day 12 Post Op

The good news is that we're still at the Hope Lodge, and not in the hospital! And there is no bad news. :) Nate had a good night sleep, and was able to sleep in this morning. He felt well enough to attend church at the Worcester 2nd Ward. We shared a pew with Dr. Lambert, and I felt like we had a bonus post op appointment. Her concern for Nate was evident as I noticed her lean forward throughout the meeting to look at him. She wasn't just taking glances either. She'd take a good long look at him, then ask me if I thought he was doing OK. She was assessing him. She commented to me that he was probably pretty uncomfortable sitting there, but that she was happy he could come. I'm grateful for her concern. She's such a genuine person. I'll miss her, and wish we could bring her home with us!

It was so great to have him there at church with me. After his surgery in February, it took exactly one month until he felt well enough to attend Sacrament Meeting with us. What a blessing that he's only 12 days out and was able to attend. I know we've been so blessed.

We're grateful to be here at the Hope Lodge. It's a quiet, bed and breakfast kind of a place to be. The other guests here are all very kind. We spent a quiet day here. Nate took a good long nap, and I was able to index names from the 1940 census. It's kind of fun! I got Nate out for a good walk this evening, and he did great! We're praying that he continues to improve day by day. We can't wait to come home! Love to all!