Not Exactly How I Thought My Summer Would Go. . .

Well, it's been awhile since my last post. Looking back I see it was the day before my life was turned upside down. It still hasn't righted itself and I'm not sure it ever will. Oh I know it will get better, well, easier is maybe a more accurate way to put that because "better" is so subjective. My amazing family and dear friends are all doing so much to help me navigate while "upside down" and I'm so grateful. But all their help can't make my mind stay focused to do what I need to do now or fix this.

My Darlin' Edmond

On June 28th in the early morning hours a chain of events started that would change everything for me. My Darlin' Edmond, still groggy from the medications he took to help him sleep got up from bed to use the bathroom. He slipped, or tripped or something, lost his balance and fell hitting his rib cage on the foot end bed post. The impact fractured at least 4 ribs (the hospital just said "multiple" but from their records I see at least 4 possibly more) Of course he was in pain but cracked ribs were fairly common for him so he simply came back to bed to try to get some more rest. I could hear him having difficulty breathing but I thought it was from the pain of the ribs, as it had been in the past so I tried to get some more sleep as well.
About an hour later he felt the need to get up again and did. He noticed that his eyesight felt off, more than usual without his glasses so he looked in the bathroom mirror to see if there was something in his eyes. That's when he noticed that his face was swelling up and the swelling around his eyes was causing the eyesight issues. He woke me and one look at him told me it was time to call 911 and his doctor at the VA.

You can see how swollen his face was already. This was approximately 7 a.m. while we waited for the ambulance to arrive

His poor eyes were nearly swollen closed already at that time and breathing was becoming more difficult even with his oxygen. His chest was just starting to swell too.

Of course the EMTs were insisting on transporting him to the hospital and started that process. I still had to dress and make sure Nate was aware of what was happening and Onyx, our dog was cared for so I joined them at St. Mary's as soon as I could get there.

When I arrived he was not in a trauma room in the ER. They had run him up for CT scans after X-rays showed multiple fractured ribs. He had insisted he hadn't hit his head in the fall but they wanted to CT his head and his torso to be sure there weren't more injuries. Ultimately the CT showed multiple fractured ribs, what appeared to be a small puncture of his lung but no injury to his head. However, it also showed that his lung had not collapsed and the swelling was not fluid. It was air filling his soft tissue in his head and upper torso. It seems with his COPD issues his lung had fused to his chest wall and when it was punctured it did not collapse as it should have so the leaking air had no cavity to fill and went where it could blowing his body up like a balloon. This was putting pressure on his lungs making breathing increasingly more difficult, on his heart and other organs and potentially on his eyes and brain with all the air in his head too. He became almost exhibit A as it seems this is a very rare situation and most in the ER staff had never seen this happen before.

Initially they wanted to insert a chest tube to try to drain the air but because his lung had not collapsed it would have punctured it again increasing the problem rather than solving it. Plus the air was in hundreds of small pockets all over his upper body so short of putting tubes in all of them that probably would have little to no positive effect. So the plan was to wait, monitor him very closely and hope the lung would start to seal itself and his body would absorb the air. They started to administer pain medications after that decision. At that point the swelling was just increasing and his condition was only getting worse. He was, however, still being my awesome, funny, smart alecky Edmond despite the pain and stress on his body and how afraid we both were. He did allow me to take some photos in case I needed to prove our case to the VA to get the impending and increasing bills paid. This is why I have photos to illustrate how awful this was for my darlin'

This was around 10 am. His upper body had really started to swell and he had to struggle to open his eyes at all.

This was shortly after they decided to move the blood pressure cuff because even loose it was restricting his arm. You can see how his shoulder area is much larger than just above his upper elbow. The cuff was keeping the air out of that area of his arm. It did fill up shortly after they moved it. You can also see the bruising developing on his side where he hit the bedpost.

This is the CT scan they showed to me to explain what was happening. The black areas are air. You can see on the right edge of his right lung where the original puncture was. It's the sort of split in the white area of the rib cage

This was taken around noon-ish shortly before they moved us up to Critical Care. He still would try to communicate with me and was so brave but finally admitted his pain level was at 10. By this point I could see air bubbles through his skin and if I touched him they would move and burst inside joining with other bubbles.

I didn't take any more photos on that day as we got a bit busy. He did get moved to Critical Care around 1 or 1:30 pm so there was that transition, updating all the files and such. My parents got there so we weren't alone after they decided to cancel a trip they had planned to New Mexico. At the time I wasn't happy about them cancelling but in hindsight I'm so very grateful to them for being there.

I think it was around 4 pm we were told that they were going to have to do surgery to try to repair the damage and seal the leak. His body wasn't sealing it on it's own due to his normally very low platelet levels. That same low level would, however, make surgery extremely risky so a transfusion of platelets was ordered to try to build him up before hand.

Around 8 pm they brought us up to the prep area for surgery. Because of all of the swelling in his neck they were worried about ventilating him for surgery and said if they sedated him to do that he would relax any muscles he was still able to control and odds were very high that the air in his neck would collapse his trachea and they wouldn't be able to ventilate him, so they had to do it while he was awake which was going to be pretty awful and actually quite dangerous. Along with that they informed us that the ventilator MUST stay in after surgery until all swelling was gone because there was already a good chance they might have to do additional surgeries and with the swelling, it could tear something coming out and if they got it out safely they may not be able to get it back in again should they need to.

I was escorted out to the surgery waiting room around 8:30 pm having been told I'd received texts from time to time advising me of both progress and his condition. That would be the last time I would be able to actually communicate with my Edmond and he would be able to talk to me. That would be the last time I would hear his voice.

The agonizing time spent in the waiting room was made easier by my parents, my oldest son Ben and his beautiful wife Katie. They made sure I had someone to talk to, actually ate something even though I didn't want to, and wasn't alone. I did receive progress texts as promised and it seemed that things were going well. I also took that time to get in touch with Edmond's sisters and his son, Ron and let them know what was happening promising more as I was able.

I know it wasn't an exceptionally long time as surgeries go, but finally we received word that it was over and he would be moved back to Critical Care. Dr. Shabahang came out and informed us that while he was calling it successful, it was much more involved than he anticipated. The fractured ribs had been basically shredding his lung tissue into hamburger with every breath making repair of a portion of his lung impossible so as much of that was removed as could be. Staples were used to try to repair what could be and the rest just had to be left to hopefully heal or scar over. This was extremely dangerous as Edmond had COPD and a large portion of his lungs were not functioning prior to the fall. There was one rib that was not repairable and had to be removed. The others were plated as well as possible. A drain was installed in his left side to help with the air that was still leaking from the lung and what was in his tissues, as well as fluid drainage. Of course he would still be on the ventilator too till all swelling was gone.

The kids and I waited till he was resettled in Critical Care before we all went home to try to get some rest.

That night he apparently had a couple of seizures. They felt they were not severe enough to do additional damage but decided to monitor this and begin medication to suppress them.

June 30th was our final "conversation" and his part of that was responding by shaking his head that he was not able to see me, even though at the time his eyes were open and he was looking directly at me. The skin on his neck is still inflated as is the area around his eyes, but it had gone down quite a bit at that point.

The next few days were a roller coaster. The swelling did start to decrease slowly and I could begin to see my handsome Edmond again. I would be told things looked like they were improving and then my Edmond would somehow escape his restraints or arrange his body so he could pull the ventilator tube out himself. This was allowed to happen twice as they tried to wean him off sedation medications to better assess how he was progressing. Fortunately he didn't do the damage we were warned about but he was not able to breathe on his own either and the ventilator had to be reinserted and more sedation given to keep him from injuring himself. This made communication with me nearly impossible and I was only able to try to settle him if the sedation was lessened at all. About the best I got during that time was when I asked him if he knew who I was and he nodded slightly, yes. Then something prompted me to ask if he could see me because his eyes were open at that point and he turned slightly toward me but shook his head, no. That would be the final exchange that would be anything like a two-way conversation. That was June 30th.

July 1st swelling was still decreasing though in areas where the skin is thinner there were still bubbles visible. He had pulled the ventilator twice by that time so he was being kept deeply sedated though something had him scrunching his forehead so I don't think he was comfortable.

The staff kept telling me that while there had been setbacks, they were still optimistic and there was some improvement too. After yet another transfusion of both blood and platelets the bleeding at the surgery site and in the drainage tubes seemed to be decreasing so it looked like there was some healing going on. Seizure activity had stopped too and those monitors had been removed. So as I talked to him and wondered if he could hear me I told him that I was still fighting and making him fight because I was being told he still had good chances of eventually winning and that's what we had agreed should either of us have to make decisions for the other.

On the 3rd of July when I arrived at the hospital in the morning more of the equipment was gone. He looked so peaceful and I hadn't gotten a phone call during the night. Someone had even turned his TV on! Of course being so hopeful I interpreted that to mean things had improved overnight and maybe he would be able to see me and communicate a little. However even though his eyes were open he didn't seem to respond to me at all. I thought maybe he was on some sort of medication to make sure he didn't try to pull the ventilator again and just held his hand till the nurse got there and I could get a report.

July 3rd. My Edmond's handsome face looking nearly like himself again. Unfortunately because his organs were struggling his lower body was now starting to swell with fluids and his skin tone starting to shift to a yellowish tint

The report was NOT what I hoped to hear. No, he was not actually under any sort of sedation at that point in time. He was just not responding. She had turned the TV on hoping he would hear it and it might trigger something. That day all of the "We're optimistic" and "We're seeing some improvement" reports became "We're optimistic but have to be realistic too" I knew this was not good and my heart began to sink. Still hoping and praying of course, but even though he was looking more like my Edmond with the swelling going down, his color was shifting to a yellowish tint which couldn't mean good things for his liver function, his ammonia levels in his blood had skyrocketed which could do damage to his other organs and his brain and his platelets had dropped again too. I stayed with him all day and decided to go try to rest at home around 10 pm.
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There are almost no good reasons for a phone call at 4 am. This was no exception. The nurse on the other end of the line told me my darlin' had been having seizures almost continuously for a couple of hours and in her opinion I should get there as soon as I could. I opted for a quick shower to try to wake myself up to be safer to drive, woke my son Nate up to give him the chance to be there if he chose to and we rushed to the hospital. We arrived by 5 am and the room was a whirlwind as they tried to get the seizures to stop. A lovely woman doctor came in to explain what was going on and the options I had to help me make the hard decisions that would come soon. Nate and I called my parents, Ben and Katie and it was suggested we call my niece Ashley who had a special bond with Uncle Ed (Knuckle Ed) I also called my pastor. Not the calls one wants to make on a summer holiday known for family, fun and fireworks but. . .

They were able to slow the seizures but I was told that there was almost no chance that they had not already caused irreparable damage and that my Edmond had already gone home. They could keep him going until I said stop but there was almost no chance now of recovery and even with a miracle it would be a life of rehab and even more limitations and handicaps than he had prior to the fall.

I had promised him that if he were ever in a place where he had to be kept alive artificially and there was almost no chance of his ever having a chance at quality of life that I would never put him through that and would let him go. We were at that place. My heart was breaking but I couldn't keep him just because I couldn't let him go. He was no longer my Edmond at that point. Everyone assured me of that. So I made the decision to wait till my kids, nieces and nephews and our pastor could get there.

At approximately 10:30 am on July 4th, 2017 I told the nursing staff to go to comfort measures only and all attempts to prolong the time on Earth of this amazing man were stopped. It took only about 15 minutes for him to peacefully fade away and my Edmond crossed over to his Heavenly Home at 10:45 am.

Since then I've been learning that it's a very involved thing to close out someone's life. We are simple people and don't have much of anything that is valuable. We'd been living on his disability pay for several years and I wasn't working so I could do my best to care for him and transport him to his many medical appointments as he was no longer driving. But it's still complex and filled with so many things to tie up and we weren't prepared for this so navigating with no will and nothing in place has been frustrating, educational, emotional and terrifying as I now must try to find a way to support myself as the disability income got cut off immediately and work is difficult to find for a 54 year old woman who hasn't worked outside the home for several years. But I have also been so blessed to have the support of my incredible family through it all and friends who even if they may not realize it have said or done something at just the right time and kept me sane and not feeling quite so lonely for just a bit.

That's the most difficult part I think. We spent so much time together. Nearly 24/7. I still look for him in his "regular places" Stopping to catch his breath and leaning on the kitchen island. In his recliner next to me watching a movie. Puttering in his garage trying to turn it into a work shop but never quite managing to do that. And it's so quiet in the house now. I don't hear his oxygen concentrator running. I only hear the TV if I turn it on. No one "does music" these days. At least not on his level. I miss him so terribly. He was my best friend. My support in every way. My cheerleader (I was his too) My partner and my TRUE love. His illnesses had us facing a very difficult end for him somewhere down the road and I find comfort in knowing that however horrific and awful THIS was, it was only a week of terrible and he, and we won't have to face what was coming. He is finally healthy, happy and without challenges and demons and I'll see him again someday.

But I miss him. . . so. . .much. . .