We were getting ready for church. I was in the kitchen and Caleb was helping our daughter get her dress on. I heard him cough twice that morning which was the only indication of what was about to happen. I heard a thud in the living room and Tavon’s voice saying “are you okay Daddy?” I went to see what happened, Caleb was on his back on the ground. I asked him if he was ok, thinking maybe he tripped.
Right away I knew something was pretty wrong. He was having difficulty speaking, breathing heavily and wasn’t getting up.The thought that maybe it was nauseousness and might pass only lasted half a second, as I realized it wasn’t some fleeting thing. I panicked and quickly looked around for my phone which was on the counter. I am grateful to Heavenly Father that I was able to find it in a timely manner and that it was charged. I dialed 9-1-1.
After what felt like ages of answering questions, the lady told me an ambulance was dispatched and to make sure Caleb knew help was coming. His skin had turned clammy within a few minutes of falling to the floor and his face was getting more and more purple. Our sweet kids were witnesses of everything happening in these critical moments. I held Caleb’s hand, letting him know an ambulance was coming and attempted to call Caleb’s mother to let her know what was happening and ask her to be with the kids. I knew I wanted to go with him in the ambulance and that I couldn’t do that with the kids. She didn’t answer so I left a quick message as the firemen and paramedics arrived with more question.
Caleb’s oxygen was drastically low but they couldn’t seem to figure out what was wrong. The only information I could give on any health conditions was that his blood had tested pre-insulin resistant 10 years ago before I even knew him. They gave him an oxygen mask and had him climb onto something they could take him down our stairs in to get out the door. Any effort or movement on his part was excruciatingly difficult. Later he told me he doesn’t know how he stayed conscious, but we are so grateful he did so he was able to make his own body breathe as deeply and quickly as it could instead of me attempting CPR to keep oxygen circulating.
People on their way to church noticed the ambulance outside our home and stopped to see what they could do. One of my friends from church was an angel to me in that moment and offered to stay with my kids until his mother got there so I could go with Caleb. My mother-in-law called me back quickly and said she was on her way to be with the kids. I am so grateful that she checked her phone at this moment when she was probably at church and easily could have had it turned off. They needed to be with someone they knew well.
The paramedics told me I couldn’t go in the ambulance with Caleb but I could follow them in our vehicle and wait in the emergency waiting area until he had been transferred to a room. I held his hand and told him I loved him as they pushed him to the ambulance. The drive to the hospital was agony as I wondered what was going on with his body. I kept thinking he had a heart attack but the way the paramedics were acting was more like they thought he had diabetes even though his blood sugar tested normal. Images of him losing consciousness in the ambulance and going to the next life without me there by his side haunted me.
Once I reached the emergency waiting room, it didn’t get any better. It seemed forever until they let me back into his room. Apparently they ran him straight to get an X-ray and a CT scan.
When I got to go back, I was grateful he was still alive. They left an oxygen mask on him but his oxygen level was still very low. His heart rate was very high, around 100 beats per minute just laying there. He wasn’t purple anymore but he was still cold and clammy with a high temperature. It took a lot out of him to speak. He felt cold and I asked the nurse twice for more blankets for him.
The doctor came in and informed us that Caleb had blood clots in his lungs and it would be a couple weeks until he was able to function well again. We were glad to know what was wrong, and eager to learn about the blood thinning medication and what kind of strain his heart had been put under during the time his body hadn’t had enough oxygen. I was texting a lot of people trying to keep everyone updated as we found out any new news.
Nurses came and pushed Caleb to a new room in the Intensive Care Unit. They didn’t let me come for that transition either which was very frustrating to me-I hated not being there with him for one second. At this point his mom had arrived. She arranged for the kids to be taken care of by our friends who had children their ages to play with.
Once they allowed me in his new room he was like a changed person, sitting up and alert and back to his normal self. He had a breathing aid (CPAP machine, which stands for continuous positive airway pressure) strapped to his face and head. A pulmonary specialist came and gave us much more detail on what was going on. He informed us that Caleb had a pulmonary embolism, which was when blood clots block the flow of blood to the lungs. According to the scans, Caleb’s right lung had been totally blocked off from blood flow as well as part of his left lung. There are 3 classifications of pulmonary embolism and the only specific Caleb hadn’t qualified for to get him to the most severe kind, a massive embolism classification, is because he didn’t lose consciousness. The cause of the clots was unknown since he hadn’t been sitting around, been on a long trip, had a major blow to the legs, or flown on a plane recently. They labeled it as “unprovoked pulmonary embolism.” This is the scariest kind because not knowing why it happened means it’s likely to happen again and could be a genetic fault in his blood.
While the specialist was speaking to us we realized that Caleb’s condition was far worse than what the ER doctor had told us. The fact that he needed so much help to be able to breathe in enough oxygen indicated that he wasn’t in the clear yet. The doctor kept using phrases like “if you survive” which was a shock to me, realizing that Caleb was still at risk of having a massive heart attack from the stress the back flow of blood was having on his heart. Scans showed that his heart was in fact now enlarged on the right side and that drastic improvement would need to happen to prevent heart damage.
Our option for medical intervention was a procedure where they go up through an artery in the inner thigh to place a drip line right next to the clots that had formed. It would drip clot dissolving medicaion into the area. The oral medication he started would prevent further clots from forming, but didn’t have the ability to break up current clots. The risk of this procedure was considered low because of Caleb’s young age. The main concern was that if his body had formed helpful natural clots in his life, for example in his brain after any head injury to keep a brain bleed from happening, those good clots could also get dissolved. This meant he could possibly have a stroke if there was any bleeding in the brain. It also meant that because of the risk the drip line could only safely be left in for 6-18 hours.
The doctor felt strongly that Caleb should get the procedure as soon as possible to relieve the stress on his heart. We both agreed, and I once again found myself away from my husband, this time for a couple hours. I was grateful to my brother who had come and was waiting with me. If you can imagine, I was was dealing with the fact that I could still lose my husband who I love more than anyone, and who is the father of our four little children. Caleb’s mother had been amazing to have for a short while and went back to be with the kids. I feel so blessed that we were living around family at this time in our life.
The procedure went well and I was in the room when Caleb got pushed back in. The plan was to check the levels in his chest in 6 hours(in the morning) to see how big the improvement was. I was hopeful that it would be a large improvement and they could take out the drip line.
Caleb’s sister immediately left her home in Arizona to be there for us when she heard about Caleb. She was an amazing help. With Caleb’s mom and sister at our home I was able to focus on Caleb and not go crazy with stress over the kids.
Morning came and we waited for the doctor to get there to check Caleb’s levels. Neither side of his chest had improved. What?! How could that be possible? I was breaking down inside with worry, knowing that Caleb’s body only had another 12 hours of the drip line medication to aid it in getting rid of the blood clots. After 12 more hours they had to take it out. I also knew that if Caleb didn’t have any improvement, they would take out the drip line anyway and he would likely suffer a heart attack from the stress on his heart.
I had been praying over and over for heaven’s help in improving my husband’s condition. I knew that the close group of family and friends who knew what was going on had been praying too. I’m not the kind of person to post on Facebook about personal private matters going on in our lives but at this moment I knew that Caleb needed more prayers. I simply posted that I believe in the power of prayer and gave a quick summary of what was happening with Caleb. He desperately needed prayers, and the response to that post was astonishingly huge with support from old friends, extended family, and colleagues, pleading on Caleb’s behalf as individuals and with their families in prayer. I will never forget what they did for Caleb and our family. If anyone reading this is someone who prayed for Caleb and our family…thank you so much! I don’t know how to express my gratitude for your help and good heart!
The doctor came in a second time to check for any improvement. Relief set in as he told us there was a 50% improvement on both sides. They removed the line from his leg. He had been instructed to keep his leg straight the last 12 hours, the one that had the line in it so as not to disrupt the flow of medication in any way. It was difficult for him to keep his leg still for so long and he was eager to be able to move around off of his back.
Caleb was able to be taken off the CPAP machine and had oxygen through a cannula in his nose, at a pretty high flow. His heart rate dropped closer to a more normal 75 beats per minute but his temperature was swinging back and forth between 99 and 101.3. They told us temperature swings are normal with blood clots. A technician came in and did an ultrasound on his legs to try to find more clots. If he had more clots it was likely they would put a filter in to block them from moving up. No clots were found so the doctor wasn’t sure where the clots in his lungs formed.
At this point he was relying so heavily on oxygen that is was difficult for him to eat and breathe at the same time. Every little thing wore him out but the next morning he tried walking, assisted on both sides and with oxygen. He was also given a breathing exercise tool to help him inhale his lungs to their full capacity. It made him cough a lot, every time he did it, but he showed his determination to show improvement. The point of the tool and breathing exercise was to keep his lungs flexible instead of stiffening up and scarring that way as they healed. I am grateful to his wonderful nurse who helped us understand the importance of what he needed to do and for showing a little tough love and belief that he could do it.
We were in the intensive care unit for three days. During this time he was able to turn his oxygen from a 7 flow to a 4.5 flow as long as he was laying and not doing anything. They moved us to the hospital floor for one night, being visited by physical therapy to help Caleb get up and walk a few times a day. I was still assisting him to the bathroom along with his walker and oxygen line and being a fall risk. I had been feeding him his meals for the past few days because of the exhaustion for him to lift his arm to feed himself.
The doctor told us Thursday would be the earliest we might go home so you can imagine our surprise when he started discharging Caleb on Wednesday afternoon. I had a sneaking suspicion it was because all of the beds were full in the hospital according to the nurses and other staff. I wasn’t too happy about Caleb being sent home…he could only go a short distance with his walker and oxygen cranked up, and our home was a split level entry which meant 9 stairs he had to conquer to get into our home. I explained all this to the doctor who sort of brushed it off.
We got him home and he did make it up the stairs to nap on the couch. Norco came and set up an oxygen machine with travel canisters for us to use when we went in the car anywhere. Caleb was considered in the “high risk” phase which is the month after a pulmonary embolism. After 2 days there was no improvement in his ability to walk or breathe. His oxygen was at flow of 4 when at rest which is considered just under hospitalization needs. Our amazing home teacher gave Caleb an oximeter
This was a very stressful time. Caleb’s mom and sister were now gone. I was trying to keep the kids out of our room as much as possible because they were getting over a cold and if Caleb caught anything it would be an ER trip for sure and could be life or death for him. Caleb wasn’t up to leaving the house for any reason other than doctor visits that had to be done. I still had appointments and things like kindergarten registration,etc with our kids I had to go out and do. Caleb wasn’t supposed to be left alone and he was unable to go with us. This meant finding someone to come and just sit in our home with him in case of an emergency. I was donating plasma to help with income and had a major thing happen because of that.
Caleb showed some improvement after a week but day nine we had to rush back to the ER due to some hot pressure he felt moving from his arm into his chest. Scans and blood work came back looking good so we got to go home at midnight. The next day he was able to move his oxygen flow from 4 to 3 and started moving short distances around our room without me. Day 11 he was able to turn it down to a 2!
I set up a baby monitor so I could hear him if he needed me when I was doing things around the house, garage, or outside with the kids. I was cooking his food according to the Mediterranean diet and he was starting to lose weight, which the doctor said would make it easier on his heart and lungs. His liver enzymes tripled on the blood thinner they originally put him on so it was switched to eliquis and that improved.
Three weeks after his PE we went to church and he did well enough that he wanted to stay for the whole 3 hours. His oxygen flow needs were between a 1.75 and 2.5. He was able to be off of oxygen for 10-15 min at rest once in a while and he walked around the block (with oxygen of course) for the first time with the kids. He was also able to help with their homework and folding laundry! He pushed himself a lot of the time but if he overdid it too much he would have to take a long nap to recover and turn up his oxygen higher than he usually did. We purchased a medical guardian for him so he knew he could get help if he was ever alone or it was just him and the kids, and I had peace of mind when he was at work or wherever. He was never left alone the first month following his PE. He was working a few hours a day from home.
Fast forward 3 months and Caleb was off of oxygen except at night and after exertion. Caleb kept an emergency canister of oxygen in his car just in case.
Eventually he was able to wean off of the oxygen at night and hadn’t needed it for over a month when all of a the sudden he started struggling again. He started needing to use his oxygen canister in his truck a lot, and was declining. We thought maybe he was sick too but after 2 weeks of decline I picked him up from work and took him to the ER. We suspected more clots but to our surprise the CT scan showed not only no blood clots but no scar tissue from the pulmonary embolism left behind either. This led us to appointments with a pulmonologist, cardiologist, and hematologist to try to figure out what was going on so we could resolve it. Tests came back showing his heart still slightly enlarged on the right side but the cardiologist didn’t seem to think it would be causing his problems. The pulmonologist set him up for asthma testing but the initial test came back negative. She set him up with a medication which was a combination that included a steroid to try to enlarge the vessele, calm down the cells in his lungs and keep down inflammation. He also had a sleep test to see if he was breathing okay at night.
The second test for asthma and other conditions came back pretty promising that he did indeed have asthma. His primary doctor prescribed him an emergency inhaler and between the steroid combo in the morning and his emergency inhaler, it was like magic and his breathing struggles almost disappeared. The hematologist told him the risks of going off the blood thinner were greater than staying on it for life, especially since his PE was classified “unprovoked”.
After he returned to work he had time to exercise and lost 45 pounds in 3 months because of his amazing self control, dedication to the habit of working out, and his amazing health coach (Me haha!) who measured and prepped all of his meals according to personal training weight loss challenge standards. I’ve never seen anybody show as much self control as he did for 12 long weeks!
It has been just over a year since his pulmonary embolism, which prompted me to write this post. We feel so blessed that his pulmonary embolism occurred at home where I was there and able to call for help. He worked all the time, so the likelihood of it happening in his truck or at work with no one around was substantially higher than happening at home. I know Heavenly Father has a plan for us and that all of this didn’t happen for nothing. It has taken a huge toll on each member of our family individually, but I know it has been for a reason. I hope this post can help someone else whose loved one has had a life threatening PE, help them know what our story is and maybe feel empowered in some small way in knowing what could possibly be coming next and that they’re not alone in their experience and fears. There really isn’t too much out there on Pulmonary Embolism stories because 80% of them result in almost immediate death. Caleb has been affected long term by the PE and will be on blood thinners and the inhalers for the rest of his life, but he is still with me. He is still here with me and our kids. We have been through so much in the last year since it happened and I’ve been able to see what an amazing Dad he really is because of him having a job with regular hours. We have a more balanced life being able to be around family and take care of ourselves.
Wishing you a blessed day!
Your Friend Jexi
Jexi, I had no idea that your husband had a PE. What a scary and very memorable experience. Thank you for sharing both your husbands struggle and your personal testimony of this very trying time for your family. The road was long but you both have fought hard, and will continue to fight. You are truly an inspiring woman, thank you!