So, What Happened?

We have been home for three weeks now and it's been really good.  The first week was so hard and then we seemed to find a routine week 2 and now we are really feeling the comforts of home and family.  I do not think I have ever loved being home more ... it is just magic every single second.  Waking up in the morning and seeing him sleeping next to me is pure bliss and is only rivaled by holding his hand as I fall asleep each night.  Last week at our weekly surgeon check up the doctor said we could "begin to think about not walking on eggshells" and I literally exhaled.  It has been such a journey.

So, what happened? 

Oh, that question is such a long answer and one we may never really know all of the answers to.  But I think I can answer it in the shortened version to explain why we spent two months in the hospital instead of the planned 7 to 10 days and are now on the long, but so welcomed, road to recovery.  On August 6th Nathan underwent surgery to remove his softball sized GIST tumor from his stomach.  We weren't sure of the extent of the surgery but the surgeon had told us to prepare for one of three results.  Best case he would be able to lift the tumor and remove it from the stomach and worst case he would have to remove the entire stomach.  The reality was most likely someplace in the middle. 

After two hours the surgeon appeared with a large smile and announced the tumor was gone and he only had to remove about 40% of his stomach which was a HUGE PRAISE!!!  Since the bottom 40% of his stomach was removed the stomach it was reattached to the small intestine leave the duodenal with a stump which was very common.  Surgery was a huge success and we moved to the floor to recover.  Eight days later (August 14) he was released and we came home for two nights before things started to change quickly.  He began to vomit and we assumed he was dehydrated and just needed fluids. After an early morning trip to the ER (August 17) we learned the duodenal stump was leaking and bile was filling his abdomen.  It was a very rare surgical complication and one our surgeon had never experienced before and hopefully will never experience again. 

From the leak it became an infection and a drain was inserted to manage the leak until it healed on its own since a second surgery so quickly was a really bad plan.  The drain + the bile + the infection ate a hole in his celiac artery and in the early hours of August 24 he began bleeding badly and was rushed tot the ICU.  The artery partially clotted on its own and was not able to be repaired due to a partial blockage.  Repairing the artery at that time would have cut off the blood flow to his liver.  This was the first time I was truly frightened but the surgeon kept reminding me his vital organs were strong and we needed to be patient and wait for a chance for a safe repair.  The nonstop praying began and God carried all of us safely through the week.  The lost blood was replaced by transfusions and most of the blood from the leak drained out of the inserted drain.  After a few days in the ICU he was transferred back to our home floor and we waited for the leak to clot completely.  On Sunday September 1 he began bleeding again but the timing of the leak was a perfect chance for repair and late in the evening he was taken back into the procedure room and the artery was completely repaired along with the vein feeding it and the blood flow to his liver remained in tack.  It was nothing short of a miracle and our team was immensely pleased.  He immediately pinked right up and asked for food and drink a little after midnight when he returned.  It was the best request I had heard in days.

As he immediately began to improve the team started talking about heading home.  We talked about it on and off for a week and he was set to be released on September 6 just in time to celebrate Labor Day weekend at home.  Every single time we talked about coming home I prayed specifically that God would close the door if the timing was not right.  I think I said specifically said ... Jesus if its not the right time SLAM THE DOOR SHUT. And he did with a tiny flash of blood in his drain which resulted in a high fever and a blood infection.  That tiny flash of blood let us all know it was not ok to go home and we hunkered down for the weekend with some extra strong meds.  His PIC line was removed and we started fresh.  By the end of the weekend he was fever free and we, again, talked about releasing him.  Once again I prayed hard for God's timing and once again God kept the door closed and locked tight. Tuesday morning he had a cough and was having trouble catching his breath and on Wednesday  (September 11) an IVC filter was inserted after they spotted two major issues the day before, a blood clot in his right lung and a large collection of infected blood at the base of his left lung.  The collection was in a difficult spot and the first Intervention Radiologist team didn't think they could insert a drain without nicking his lung, so we waited for a better shot at it later in the week. So much waiting and so much praying.  I was wearing way down ... and was so concerned ... his lungs were a major organ. 

Friday (September 13) the timing was perfect and the drain was inserted to remove what was left after 2 liters of infected blood was removed from under the lung.  The team and I felt so good about everything as he was wheeled back to the room to recover but within just a few hours things changed so quickly.  He began to struggle to breathe and by 6 pm he was back in ICU with major respiratory issues.  I think I completely crumbled that day as I watched things go from good to bad in mere hours.  Saturday we learned he had more blood clots in his right lung and they were in the pulmonary artery partially blocking the blood flow.  Typically the remedy would be a Heparin infusion but since he was a bleed risk it was a weekend of wait and see and then questions of when to begin and how slowly to start.  I think I struggled more that weekend than I did any other time.  His lungs both had issues and I saw the worry and stress in our surgeon's face.  I was tired, weary, and completely relying on Jesus for every single breath both he and I took.  The Heparin began on Sunday and we all prayed so hard for every single drip to be successful and for a hedge of protection over every single vein and artery in his body.  I specifically prayed that not one single drop of blood would be shed. 

This is the weekend the CaringBridge site began.  I was beyond behind on updating family and friends and my entire focus needed to be on him and my own health and so Sunday morning sitting in his ICU I wrote my first journal post.  I so wanted to glorify God as he was clearly so present in our every single day and most definitely was holding both of us up and carrying him and me so many moments of every single day.  Every single night as I closed my eyes next to him I visually laid my beloved at the feet of Jesus.  It was the hardest time we have ever faced.  After a trip of my own to the ER that Sunday afternoon I was required to sleep at home at night.  I was so focused on being there for him for any and all things and my own health wasn't doing so well. I so thought I was taking good care of me, but there was no way to manage the level of stress and the roller coaster we clearly could not get off. That first night I was truly panicked to leave him but I left him with amazing doctors, a precious nurse and, of course, at the feet of Jesus. ❤

As the Heparin infusion was going beautifully he developed another issue while we were still in the ICU and on Tuesday (September 17) one liter of fluid was drained from the pleura around his left lung. The large collection of blood irritated the lung and the fluid collection was the lung protecting itself.  He was transferred to our home floor again on September 18 but within 24 hours the fluid was back around his lung and he was moved to the ICU step down Pulmonary Unit for the preparation of a chest tube.  Between the 19th and the 22nd it was a blur of a chest tube, multiple transfers of floors, extreme pain and fever, infection and by early Monday morning he was transferred back to the ICU. 

Those precious lungs were truly such a struggle and as long as they had issues I had such a hard time managing my own anxiety. By this time we were being seen by our sarcoma surgeon, an infectious disease doctor, a pulmonologist, our oncologist, a hematology oncologist and later in the day on Monday we added a thoracic surgeon to the team.  There were a few pockets of infection in the fluid under his lung and surgery was our only safe option.  So many times over the weeks our surgeon would tell us that surgery was unsafe but when the critical care doctor told me of the new issue she very boldly shared it was the only option he had.   The infection would be removed, the area washed out and a better drain would be inserted to keep the area safe and clean.  Any further collection from the area would be able to drain and he would once again be ok.  He had surgery on Tuesday (September 24) and Wednesday we were once again transferred back to the step down unit.  I will always be amazed by the strength and strong will that is my husband.  He was awake and alert after surgery and Wednesday morning walked a short distance with the PT team.  No matter how bad it got and how sick he was he still wanted to try and get up on his own and walk.  I think it kept him sane and I can tell you I saw the love and strength of God every single time he put one foot in front of the other.  With the fluid in the pleura of his left lung gone and the infection under control he quickly felt so much better.  The chest tube was out on Thursday and Friday evening we transferred out of the step down unit and back to our home floor.  It was a late transfer but honestly it was nothing short of Jesus.  He instantly felt more at ease, stronger and so close to feeling like a full recovery was a real thing.

So the last week in the hospital is now a bit of a blur for me ... from the night he was moved on September 27 it was a focus on eating, managing antibiotics, watching both drains, walking, managing pain and sleep, and the constant discussion of when to go home.  I was in zero hurry all the time still praying that God would reveal the perfect time.  His white blood cell count was slowly coming down from 40 before lung surgery and his red blood cell count was slowly climbing after his last blood transfusion (his ninth) in the step down unit.  There was a constant buzz of talk of when to go home and I just lived for each and every day putting the thought of all the worry behind me.  When our surgeon talked more seriously on Thursday I officially hit panic mode.  I did not think I would react the way I did but the stress of the weeks + the worry + the exhaustion hit me all at once and I had two days of the largest amounts of panic attacks I have ever had.  My parents arrived just in time for this and my dad was the best to talk to me at nights and just reassure me that my feelings were so real and warranted.  Our team was incredible and the surgeon was so very patient with me as I tried to process my feelings and prepped to bring him home.  Lots of supplies, lots of preparation, lots of stuff and so many emotions.  Looking back I think I was most sure God would shut the door again and he would develop another issue.  I was not sure how much more his body could manage.  He was so tired, so weak and had lost so much weight.  He was ready to just heal and I wanted it for him so very much. 

The day we left the hospital could not have been more about God's timing.  On Saturday, October 5 his blood results were the strongest they had been in weeks.  His RBC count jumped to almost 11 and WBC took a fabulous dive which was the perfect sign we needed to come home.  I arrived at just about noon and the rest of us came closer to one and we left the hospital mid afternoon headed for home.  I was full of emotions of all kinds and so very thankful for the opportunity to take care of him in our home, with our family, and with so much incredible support.  I think I can equate it most to bringing home a baby ... there were a number of sleepless nights, zero idea of how to care for him and feeling so inadequate at most everything he needed.  We prayed so much, tried to offer each other so much grace, and took it moment by moment and he did so much better than anyone expected.  The surgeon shared two weeks ago that he thought we wouldn't make it more than three days and to the moment I am typing this we are on day 22.  He is getting stronger every single day, is down to one drain, and has started three days a week of physical therapy.  Every single moment I get to look over and see him I praise Jesus for the miracle he has delivered to us. 

A few days after we came home he and I were sitting on the porch with my parents and he was rubbing the ears of our sweet Millie.  My heart almost exploded and I erupted in the happiest of tears.  There were days I didn't think he would ever come home, ever sit with me on the porch or ever experience any sort of normal.  There was more than once I prayed that God would take me and spare him the pain and immense issues he was dealing with and two days where I saw nothing but black when I closed my eyes.  These months have completely shattered my heart and God is slowly but perfectly putting pieces back the way He wants them.  The busy of life is gone and what is left is intentional and sweet and very precious.  We are both completely changed because of this and I don't regret the change one single bit.  Slowly but surely the traumatic is being replaced with the energetic and I am ready to see what is next.  He is needing me less and less and it feels good to sit here this Monday morning and write while he went to PT without me.  I may have held my breath the whole time but he feels incredible about any independence he can have.

He will make a full and complete recovery.  Once we are released by our precious surgeon and the rest of the team we will once again start oral chemo.  How long and how much will remain the question until we meet and discuss the next step.  The surgery was a huge success and he is completely tumor free with clear margins.  Chemotherapy after surgery was always the plan ... what was never planned was the journey we had. 

I do not think I will ever be able to share with you all what your support and love has meant to us.  There are no words and nothing I could say or do to show you what you mean to me.  I only hope I can produce content you love going forward and I know I will be doing my best to produce content I am proud of as I take this next step.  As always the blog sees changes as I have changed and I think I am most excited to see what comes of this journey.  Above all, my goal is to glorify God with every single word and step.  💓

I hope your Monday is nothing short of amazing!