Steve had a couple good days in a row and then today he seems to have taken a step backward. He was tired all day and he slept a lot despite a much better night's sleep last night. He was a little feverish after his shower this morning but that seems to be pretty typical. Steve suffered another migraine headache tonight which is a little disconcerting. I'm hoping that is just because his body has been through so much and it is angry. But one of the pins that goes from the external pin fixator into his face was tender this morning and the doctor told us to be attentive to any changes in the skin around the pins or any pain which could indicate an infection. Later in the day the tenderness around the pin subsided so we are in "wait and see" posture.
In between Steve's naps today, he came outside to sit with me for a few minutes on the patio as I was enjoying the beautiful day. We had the opportunity to talk about the elusive answers to the big question "Why?" As we talked, I mentioned my last post which I explained I probably shouldn't have posted. I was afraid it made me sound like a complainer and he had me read it to him. His eyes watered as I read the words and his head fell. He's very emotional about what this incident has done our whole family and he has said before that he feels a sense of responsibility for putting us through this. Of course, I told him how proud we all are of him and I tried my best to reassure him that we are all okay. Then he told me something that I almost expected to hear all along because of who Steven Jenkins is. Ever since I've known Steve, he's always been a do-gooder. Everywhere we go, he attracts people that need help . . . old ladies who have flat tires, kids whose bikes have stopped working because the chain has fallen off, neighbors who have fallen and can't get up (cheezy I know...but true!), dogs that have been hit by cars. You name it, Steve has helped that person, or dog. Once he even foiled a vehicle theft in progress on our own street! Just like all the great superheroes, he's always in the right place at the right time, perfectly and strategically placed so he can help whomever is in need of help. So when he told me that he wasn't even supposed to be working the day he got shot, that he traded days off, I was at first astonished, then reassured, comforted and inspired. What an example of "everything happens for a reason." In that moment, I was reminded of the certainty of the bigger plan. I know myself well enough to know that I will still ask why. But hopefully I will just look into the eyes of my hero and know why. Here he is with his kids tonight before bedtime:
I don't know if it's the coffee I'm drinking that's making me feel a little manic, but I am wide awake and the rest of my family is sleeping. It's almost midnight and this time is like the quiet time I had in the hospital when Steve was sleeping, minus the alarm bells of IV machines and humming of blood pressure cuffs. I'm having one of those moments I have every so often, mostly at night, when the events of the last three plus weeks are settling into my mind, making themselves at home there, and I'm uncomfortable in my skin. The discomfort I feel is like an itch, an irritating itch that's keeping me awake when I'd much rather be asleep. I'd so much rather be relaxed and okay, yet I'm restless and weary and I just want my life back the way it used to be. I'm so well aware that there are thousands upon millions of people whose lives are unbearable who would give anything to be in my shoes. I know this and I should be grateful (which I really am) and yet I'm feeling sorry for myself and I'm tired and I just want my husband back. I want my kids to feel safe and I want to not have to make so many important decisions and I just miss Steve. I know I have him and thank God for that, but I miss hugging him and not having those metal rods between us. I'd give anything to feel that wirey, scruffy stubble that I used to complain was too prickly against the skin of my cheek. Why am I learning this lesson again? Why am I being forced to find another new normal? I've tried to stop asking why but in the crazier moments, that is the only thing I want to ask. And I never seem to get any answers to the question, "Why?"
I changed the layout of the blog. I was using such an old template before that it made it hard to make layout changes. I'm having a hard time getting used to the new look so be forewarned, the look of the blog might change again but the content will certainly remain the same.
Some of Steve's coworkers came by yesterday to check on Steve. Lt. Arcos brought pizza for those of us who could eat and for Steve I made butternut squash soup which he drank through a straw. Steve had a nice visit with them and I heard a lot of laughing so I know the lightheartedness of having friends visit had to be good for Steve. Here's a picture of the guys:
Last night Steven suffered a migraine headache. Although migraines are nothing new to Steven, I wasn't quite sure what to do because I didn't know if I should give him his usual Excedrin Migraine since he was taking two different blood thinners. So I paged Dr. Hanpeter who called me back immediately. I was very impressed with his quick response. After talking with the doctor, I ended up giving Steve some liquid Vicodin which worked beautifully on the migraine and Steven was able to sleep a little better last night. Steve is taking two different blood thinners so he doesn't have problems with the big blood clot in his chest. When the vein in his left chest was damaged by the bullet, the doctors desperately wanted it to clot to stop the bleeding. But now that very clot poses a danger for Steven. As I understood it from Dr. Hanpeter, if that clot were to break loose, it could cause real trouble for Steven so Dr. Hanpeter prescribed Lovenox and Coumadin to prevent that from happening. I really don't know specifically how that works but it does make some sort of sense to me.
Not only is his blood thinner but Steven himself is getting thinner by the day. He never complains about the liquid diet but I know on some level, Steve is growing tired of soup, smoothies, and drinkable yogurt. He's lost 25 pounds and it really shows in his face. I don't think I've ever seen Steve with such defined cheek bones! At this point, I think food is totally irrelevant to Steve and he just wants to feel better, but if anyone out there has any good soup or smoothie recipes, I would love to have them so please feel free to include any recipes in the comments. And they definitely don't have to be vegan . . . I am the only vegan in the family.
Steve continues to be humbled by the love and support of everyone and he is wearing his heart on his sleeve these days. I've never seen someone so grateful just to wake up in the morning. He reminds me everyday how lucky I am for my good health, my loving family, and this wonderful life. No matter how chaotic and upside down this life experience can be, it is perfect just the way it is.
I just said goodbye to Steve's sister, Chris, who spent the last two plus weeks with us. She came from Washington to relieve my parents who were caring for the kids for the first week we were with Steven in the hospital and now she has to go home. Chris saved us in so many ways but mainly just being there for the kids, making sure their lives were minimally disrupted by what happened, and now it's time to say goodbye as she goes back home to her husband and her family. We are already feeling the pain of letting her go.
Steven is continuing to recover and it is clear that this process is going to be a long and slow one. As much as Steven wants to be doing more, his body just needs time to heal and that is proving to be a little frustrating for him. He tires so easily and yesterday his temperature was slightly elevated for a period during the day. I almost called the doctor but after a little time and a lot of rest, Steven's temperature returned to normal. Even though Steve is still on antibiotics, there is the danger of infection from the wounds that are still healing as well as the feeding tube, pins in his jaw, and the pulmonary issues (pneumonia, etc.). It's easy to forget about the potential complications when Steve appears to be doing so well, but they are always lurking and I have to be aware of the warning signs.
More and more, Steven is becoming aware of just how lucky he is to be alive and it hits him several times throughout the day. He walked into the backyard yesterday to feel the sun on his skin and he broke down. I asked him how he was feeling and he said that he just felt so grateful. He felt grateful to be alive and grateful that his injuries weren't worse. He felt so fortunate to be able to be with his kids and me and the rest of our family. There are so many things throughout the day that trigger this in him and I feel very lucky to be able to be witness these moments.
I have asked Steve a lot of questions about what he experienced the night he was shot. I had (and still have) so many questions and he has been very forthcoming with the information. I don't know if any of you are interested in this information but here's what I asked. I asked him if he had a sense that something wasn't right before the shooting. He said no. He said he had no inclination that anything was wrong, he didn't see anything out of the ordinary, and he had no gut feeling that something was about to go terribly wrong. I asked him if he knew he had been shot. He said he definitely knew, he knew he had gotten shot in the face and that it was bad because he knew the round had blown away some of his teeth. However, he never tried to touch his face so he didn't know how bad that injury was. Soon after the gunshot wound to his jaw, his mouth felt full (likely blood and tissue). He said that the round that entered his chest was painful and he knew it was bad. He said he was relieved that the rescue ambulance showed up within seconds because he now believes he would have died without their immediate action. I asked him if he had a near death experience and he said no. I asked him if he thought he was going to die and he said he knew he got hit bad but the thought of dying never entered his mind. He said one of the paramedics kept saying, "Stay with me, stay with me." That made me cry. When he arrived at the hospital, he said he felt like going to sleep, like he could finally rest.
Steve continues to make progress by the minute. He seems to be doing really well and we are settling into our routine of medications, bandage changes and mouth and pin care. We do that four times a day and the nurse comes somewhere in between to draw blood and to make sure we are doing everything properly. Steve told me earlier this evening that daytime is easiest but as nightime nears, he starts getting anxious. Even with sleep medication, Steve can only sleep for about two hours at a time and then he wakes up. When he does sleep it is a restless sleep with night sweats and a general uncomfortable feeling. So he wakes up every two hours and everyone else in the house is asleep and he doesn't know what to do with himself. It's very lonely.
I'm starting to see that the psychological and emotional scars of this incident will far outlast the physical ones. Already, Steve has told me that he always thought that if he did everything right that he would never get hurt. Well he did do everything right and he still got hurt. That's a hard pill to swallow and it makes us all realize just how vulnerable we really are.
All in all, Steve is handling his recovery like a pro and he's taking it one day at a time. He has to get his strength back because I have a long list of things for him to do and he's gotta get working on it before summer!
Happy Easter everyone! Wow, we just finished reading the latest comments on the most recent post and I couldn't help but feel that Steve's story is so much bigger than just him and our family. This story is about all of us (including every one of you who reads this blog) and your personal stories of struggles, challenges, and the inspiring stories of events in your own lives that you refer to in your comments. I love that we are all connected and uplifted by one another.
After arriving home yesterday, all we wanted to do was relax but of course there was too much to do. We had to organize all of our supplies from the hospital and attempt to establish a routine for medications, dressing changes, mouth and pin care, and Steve's feedings through the feeding tube. Then the home health care nurse came to evaluate Steven, help with any questions about his care, and determine what supplies we needed and didn't have. It was a bit overwhelming. I was very apprehensive about changing the bandages on Steve's wounds and neck where his trach tube had been but luckily I managed to complete the task without passing out. After all that, I still had to put the kids to bed and prepare for Easter morning. By bedtime, I was exhausted and foolishly thought I would sleep like a baby.
I gave Steven an Ambien through his feeding tube to help him sleep and got in bed. As I laid in bed, listening to Steve breathe, thoughts began flooding in and I couldn't quiet my mind. I listened to the pump of the feeding tube which triggered memories of a year and a half ago when I had the same sort of set up at home for myself after my cancer surgery. The rhythmically timed squeak of the pump brought back so many painful memories and emotions that I laid there feeling devastated for Steven, what he's been through and what he still has to endure. Then I tried to imagine how it must be for him only being able to breathe through his nose and the gaps in his teeth. I clenched my jaw and imagined what it would be like having to sleep with my jaw wired, only being able to breathe through my nose. I got so clausterphobic thinking about it that I broke out in a sweat and felt totally freaked out. I think it caused a slight panic attack. Needless to say, I couldn't fall asleep and all I wanted to do was listen to him breathe so that I knew he was still alive.
I must have fallen asleep eventually because Janie came in a 6am telling us that the Easter Bunny had come and left Easter baskets. I asked her if I could sleep a little longer before we went to see exactly what the Easter Bunny brought and she agreed. What a great kid! Eventually the other kids woke up and dragged me out of bed at 8. Steven stayed in bed because he hadn't slept very well throughout the night and he was barely able to lift his head off the pillow. Later in the morning, the nurse came to draw Steven's blood and after she left, I taped plastic around all Steve's bandages and he took his first shower in almost 3 weeks! Afterward, we all hung around the house, cuddled and watched movies, and enjoyed a very relaxing Easter Sunday. It was a great day.
