I held Will's left hand and pet his forehead and told him we were here and everything was okay, and he immediately started to calm down and not shake anymore. I don't remember the sequence of all this, but I told him we were at the hospital and that we thought we lost him (I think that's what I said, and started to break down). He was still intubated and obviously extremely uncomfortable from that, trying to move around, and we told him not to move even though it was uncomfortable. I let Alena trade me places, and she said something like, "Can you see me?" or "Can you open your eyes?", and he suddenly opened his eyes quite widely. They were blood red and a little goopy. At some point, I returned to the head of his bed (left side) and was still holding his left hand, when I realized he was signing ASL letters in my hand. We first saw W-H-A-T-H-A (by then we said, "What happened?" and he nodded). I explained. He then signed B-A-D-D-R-E (somewhere in there we asked, "Bad dream?" and he nodded), to which we responded, "Tell us about it!" with an involuntary laugh. He asked (I forget how) the day and/or time, and then started in with "What happened?" again. The doctor had told us that his short-term memory would be pretty bad for a while, so we were expecting that and went through things again. Sometime around now, I tried my mom at 7:45 to update her quickly, left a voicemail, and then called my brother, Joel, when I didn't reach her, gave him the update and asked him to let family know and post it to Facebook.
At some point, the nurse said the respiratory therapist would be there in a minute to take out Will's tubing (which was surprising, since the doctor had said he would do it - but we weren't arguing, since we wanted Will more comfortable and able to communicate with us!). Alena took a picture of Will giving the thumbs-up sign, which we posted to Facebook, and which has since symbolized to me all the miracles we experienced during this time.
Bishop was there by then (I forget...he might have been there from the beginning that morning). My memory of sequencing is horrible, but here are the first few things that Will said once he was no longer intubated (several of them repeated several times, due to that short-term memory):
Each night, going home to get the kids fed and to bed was pretty rough, since the kids were so wound up from their day. But it was certainly helpful for them to have us there and maintain a fairly normal bedtime routine. BabyG would say, "Daddy? Daddy?" anytime she was close to our bedroom or if we went in the garage to go anywhere and she saw his red 3000GT. After the kids were down, I headed back over with Alena to spend a little time with Will before returning home for bed. The doctor had spoken to Will about the potential (likely) need for an ICD (internal defibrillator) implant to prevent this from happening again. They had also put him on stronger pain meds, because at some point he had been crying due to the intensity of the pain (but he hates pain meds and was trying to avoid saying anything). The Bishop came by while I was there and gave Will a beautiful blessing, saying that all of this was not to punish him but to allow the Lord to bless him even more. He said that despite that, the feelings of frustration and sorrow were perfectly reasonable and understandable to have. Those are the main things I remember. I said goodnight and left Alena and Minnie with Will to go home and sleep. Before I left, I told Will this might be hard for him to hear because of how much pain he was in and how frustrating the day was, but that this day was the best day of my life.
The next day (Thursday) was taken up with stress tests on his heart and more physical therapy. He was extremely dizzy that day and in a great deal of pain from the chest tube. Around 5PM, the nurse and I were giving Will a sponge bath when Dr. Wang called our room. He had been expecting to come visit Will between 5 and 5:30, but got called in unexpectedly to Timpanogos Regional Hospital and wouldn't be able to make it back until late. He said that Will had passed his stress test, which meant that his heart was strong, and it was much better to have a strong heart with arrhythmia than a weak heart with it. He said Will would need the ICD. He said he would still look at Will's file that we had brought in case anything stood out to him that could connect this to his chronic tendinitis, but he strongly doubted he would find anything. I asked if the investigation of of Will's situation would continue after the ICD implant and quick review of his file, and he basically said no, that the secondary diagnosis (beyond the diagnosis of cardiac arrest due to v-fibrillation) would be something-or-other that meant that there was no known medical cause for the cardiac arrest, and how he'd just had two other patients recently that had that diagnosis or something. I explained how frustrated Will would be to get basically an exclusionary diagnosis out of this, especially with the lack of answers he'd already had from so many doctors about his tendinitis (which showed up out of the blue around 3 years ago when he was healthy and had taken good care of himself). The doctor agreed that there may well be a "unifying cause" to the tendinitis and cardiac arrest, but it was "not known to the medical world" and basically said he was considering Will's case to be closed. In answer to other questions, he said he had already penciled Will in for the ICD surgery the next afternoon, and that Will would likely be able to go home on Saturday. The ICD would track Will's heart rhythm at all times and report it all to Dr. Wang's office so they could track everything going on (so that might possibly teach them something). I was getting emotional (in frustration for Will) as we ended the conversation, and as soon as I hung up I just started crying. Alena, Jeana, and Minnie returned just then and I went on a rant about how sick I was of doctors who stopped investigating as soon as Will's problems didn't fit in their typical cubby-holes of answers. I was really mad that no one cared enough to really go the extra mile and/or try to collaborate with other specialists to figure out what the heck had been going on with Will for years and especially now. It took me a few hours to calm down from that (also venting to my Mom on my drive home to get the kids to bed), but eventually I forced myself to focus on the miracle we had experienced in Will's simply being alive. After the first hour or two of panic on Monday, I hadn't been emotional except for once on Tuesday when I was telling my mom on the phone that I knew Will knew I loved him, and then the time when he was first coming out of the coma. So I was holding my composure for a long time and just holding everything in, and this was the leak that burst that cloud open into a downpour of emotion and tears.
Jeana and I ran home to take care of the kids, and not long before I got back, they finally took the chest line out of Will, and he seemed to be feeling quite a bit better at last. Alena and Jeana headed to the airport to get Kimra and Matt (Will's sister and her husband, who came out earlier than they originally planned for a trip to Idaho, so they could come see Will beforehand). The next morning, while I was getting the kids ready, Alena let me know that the ICD surgery would be late morning or early afternoon (earlier than we had anticipated) and that the doctor had recommended an MRI to check on Will's brain due to his prolonged dizziness and the question of whether he had hit his head during his fall; once his ICD was in, Will would not be able to have an MRI again, so this was his only chance for that. Will was very uncomfortable with the MRI idea, since the machine made him feel VERY claustrophobic, and the procedure would take thirty minutes. I talked to Will for a little over the phone to try to help, but the kids were acting up and I had to leave. I said I supported whatever he wanted to do, but that it sounded like the MRI might be a good idea if he thought he could handle it. Later, Alena texted that he had gone for the MRI and that the bishop had come and given him a blessing. Then, later, she let me know that he was already going in for the ICD surgery before I had even left home (I felt so bad that I wasn't there, and surprised how quickly everything was happening that morning). She said Will was pretty upset because the doctor told him he would not be able to bench press, do push-ups, or do military press for the rest of his life (although other weight lifting and exercises would eventually be fine).
When we finally got to the hospital in the late morning, Bishop was there with Alena and Minnie. Dr. Pearce came in to tell us that the MRI was clear except for a tiny blip that wasn't in an area related to dizziness and was probably just due to recovery from the cardiac arrest/coma. Kimra and Jeana came, and all of us had a nice conversation with each other and the Bishop while we waited for the ICD surgery to finish (about 2 hours). Then Dr. Wang came in to let us know that it had been successful. He reminded us that 97% of people who experience cardiac arrest do not survive, and of the remaining 3%, most do not fully recover - so everything lined up just right to give us the miracle of Will being alive with full recovery. The ICD would ensure that this would never happen again (he would almost certainly not survive a repeat incident), as it would sense an arrhythmia and immediately shock his heart back to life (feeling like a kick in the chest from a horse) if it ever occurred again.
We went back to see Will, and he was very groggy and tired. That was Matt and Kimra's first chance to see him, though, so we visited for a bit. Then, they had everyone but me leave so Will could get some rest. Other than Tuesday, I didn't really spend too much downtime journaling - it was almost a full-time job responding to texts, comments on status messages, phone calls, etc. And then remembering to make updates on Facebook, since everyone was anxious to hear news each day. Sometimes I laid my head on Will's leg or on the arm of his hospital bed and dozed a bit. When everyone returned, we had a fun visit all together in Will's room (there were six of us besides Will - so much for two at a time!).
On Saturday, I headed over to the hospital to (I thought) pick up Will and bring him home. However, I walked into his room just in time to hear the doctor tell him they would keep him overnight again, since (a) he was still pretty dizzy and not completely steady on his feet, (b) he wasn't strong enough still, and (c) they had to switch him to an oral antibiotic (instead of the one through the IV), so they want to make sure he can tolerate that before sending him home. It was definitely wise, even though Will was disappointed. So he had one last walk around the ICU with the PTs, and a last nap while I worked on journaling, and then they moved him to the telemetry floor (so he wouldn't be so connected everywhere and could move around more). He was pretty wiped out by the time they got him situated, then I ordered him some lunch and he rested on and off for the afternoon.
- "What happened?" (we realized too late after the fact that we should have recorded my explanation on my iPad, then pressed Play each time he asked after that!)
- "What the crap?!"
- "What the Hades?!"
- "This doesn't happen to me."
- "This is the wrong side of the bed to be on."
- He rubbed his head, and Jeana said, "You still don't have hair." He said something, like, "Darn it."
- He had a really hard time (for a few hours) accepting that it was Wednesday. I probed to get the last thing he remembered, and it was going to bed Sunday night.
- He talked about not liking hospitals and not having been in them (he and Minnie talked about how he'd been in to have tubes in his ears and once when he broke his nose, but how he didn't come in when he broke his sternum because there's nothing they can do for that). So we weren't worried about his long-term memory.
- He kept asking if someone had called work, and I repeatedly explained how I'd called them on Monday and had been communicating with them since. One time, he was specifically concerned about not being there for payroll that had to be run. After a few hours and several repetitions, he started remembering being told that and also remembering (if I prodded him when he asked what happened) being told that he fell in the bathroom - after which he would ask why and more details.
- He said hi to the Bishop, and every minute or two if he looked back over at him, he would say something like, "Oh, hey, Bishop!" Later, he would remember (if it was brought up) that the Bishop was there and even where he had been standing in the room.
- He said "This is a bad dream" and "I'm just waiting to wake up from all of this" several times. Also said he felt like he was in the Twilight Zone two or three times.
- He had pain in his shoulder/side (which we thought was all due to the line in his chest from his collapsed lung, and later found out was also connected to a bubble of air in his lung that can be VERY painful). So he talked about how badly it hurt and then when we mentioned the collapsed lung, he was surprised and frustrated about that all over again each time.
- Throughout the day, each time Jeana returned to his room after an absence, he would act like he hadn't seen her before and was so pleasantly surprised she had driven down.
- He asked several times about the kids and who was watching them.
That day, the physical therapist and his assistant came by to get him out of his bed, and he walked back and forth about 5 feet three times. Dane and Ali came to visit after they'd dropped the kids off, and Will was pretty cheerful and animated with them - when Dane showed him a picture of his new gun and said Will should come shoot it with him sometime, Will immediately quipped, "Well, what are we doing here? Let's go!" Will was in a lot of pain that day, but he seemed pretty distracted from that by how frustrated he was with how he could possibly have suffered cardiac arrest, be in the hospital, and lost two days of his life.
Each night, going home to get the kids fed and to bed was pretty rough, since the kids were so wound up from their day. But it was certainly helpful for them to have us there and maintain a fairly normal bedtime routine. BabyG would say, "Daddy? Daddy?" anytime she was close to our bedroom or if we went in the garage to go anywhere and she saw his red 3000GT. After the kids were down, I headed back over with Alena to spend a little time with Will before returning home for bed. The doctor had spoken to Will about the potential (likely) need for an ICD (internal defibrillator) implant to prevent this from happening again. They had also put him on stronger pain meds, because at some point he had been crying due to the intensity of the pain (but he hates pain meds and was trying to avoid saying anything). The Bishop came by while I was there and gave Will a beautiful blessing, saying that all of this was not to punish him but to allow the Lord to bless him even more. He said that despite that, the feelings of frustration and sorrow were perfectly reasonable and understandable to have. Those are the main things I remember. I said goodnight and left Alena and Minnie with Will to go home and sleep. Before I left, I told Will this might be hard for him to hear because of how much pain he was in and how frustrating the day was, but that this day was the best day of my life.
The next day (Thursday) was taken up with stress tests on his heart and more physical therapy. He was extremely dizzy that day and in a great deal of pain from the chest tube. Around 5PM, the nurse and I were giving Will a sponge bath when Dr. Wang called our room. He had been expecting to come visit Will between 5 and 5:30, but got called in unexpectedly to Timpanogos Regional Hospital and wouldn't be able to make it back until late. He said that Will had passed his stress test, which meant that his heart was strong, and it was much better to have a strong heart with arrhythmia than a weak heart with it. He said Will would need the ICD. He said he would still look at Will's file that we had brought in case anything stood out to him that could connect this to his chronic tendinitis, but he strongly doubted he would find anything. I asked if the investigation of of Will's situation would continue after the ICD implant and quick review of his file, and he basically said no, that the secondary diagnosis (beyond the diagnosis of cardiac arrest due to v-fibrillation) would be something-or-other that meant that there was no known medical cause for the cardiac arrest, and how he'd just had two other patients recently that had that diagnosis or something. I explained how frustrated Will would be to get basically an exclusionary diagnosis out of this, especially with the lack of answers he'd already had from so many doctors about his tendinitis (which showed up out of the blue around 3 years ago when he was healthy and had taken good care of himself). The doctor agreed that there may well be a "unifying cause" to the tendinitis and cardiac arrest, but it was "not known to the medical world" and basically said he was considering Will's case to be closed. In answer to other questions, he said he had already penciled Will in for the ICD surgery the next afternoon, and that Will would likely be able to go home on Saturday. The ICD would track Will's heart rhythm at all times and report it all to Dr. Wang's office so they could track everything going on (so that might possibly teach them something). I was getting emotional (in frustration for Will) as we ended the conversation, and as soon as I hung up I just started crying. Alena, Jeana, and Minnie returned just then and I went on a rant about how sick I was of doctors who stopped investigating as soon as Will's problems didn't fit in their typical cubby-holes of answers. I was really mad that no one cared enough to really go the extra mile and/or try to collaborate with other specialists to figure out what the heck had been going on with Will for years and especially now. It took me a few hours to calm down from that (also venting to my Mom on my drive home to get the kids to bed), but eventually I forced myself to focus on the miracle we had experienced in Will's simply being alive. After the first hour or two of panic on Monday, I hadn't been emotional except for once on Tuesday when I was telling my mom on the phone that I knew Will knew I loved him, and then the time when he was first coming out of the coma. So I was holding my composure for a long time and just holding everything in, and this was the leak that burst that cloud open into a downpour of emotion and tears.
Jeana and I ran home to take care of the kids, and not long before I got back, they finally took the chest line out of Will, and he seemed to be feeling quite a bit better at last. Alena and Jeana headed to the airport to get Kimra and Matt (Will's sister and her husband, who came out earlier than they originally planned for a trip to Idaho, so they could come see Will beforehand). The next morning, while I was getting the kids ready, Alena let me know that the ICD surgery would be late morning or early afternoon (earlier than we had anticipated) and that the doctor had recommended an MRI to check on Will's brain due to his prolonged dizziness and the question of whether he had hit his head during his fall; once his ICD was in, Will would not be able to have an MRI again, so this was his only chance for that. Will was very uncomfortable with the MRI idea, since the machine made him feel VERY claustrophobic, and the procedure would take thirty minutes. I talked to Will for a little over the phone to try to help, but the kids were acting up and I had to leave. I said I supported whatever he wanted to do, but that it sounded like the MRI might be a good idea if he thought he could handle it. Later, Alena texted that he had gone for the MRI and that the bishop had come and given him a blessing. Then, later, she let me know that he was already going in for the ICD surgery before I had even left home (I felt so bad that I wasn't there, and surprised how quickly everything was happening that morning). She said Will was pretty upset because the doctor told him he would not be able to bench press, do push-ups, or do military press for the rest of his life (although other weight lifting and exercises would eventually be fine).
When we finally got to the hospital in the late morning, Bishop was there with Alena and Minnie. Dr. Pearce came in to tell us that the MRI was clear except for a tiny blip that wasn't in an area related to dizziness and was probably just due to recovery from the cardiac arrest/coma. Kimra and Jeana came, and all of us had a nice conversation with each other and the Bishop while we waited for the ICD surgery to finish (about 2 hours). Then Dr. Wang came in to let us know that it had been successful. He reminded us that 97% of people who experience cardiac arrest do not survive, and of the remaining 3%, most do not fully recover - so everything lined up just right to give us the miracle of Will being alive with full recovery. The ICD would ensure that this would never happen again (he would almost certainly not survive a repeat incident), as it would sense an arrhythmia and immediately shock his heart back to life (feeling like a kick in the chest from a horse) if it ever occurred again.
We went back to see Will, and he was very groggy and tired. That was Matt and Kimra's first chance to see him, though, so we visited for a bit. Then, they had everyone but me leave so Will could get some rest. Other than Tuesday, I didn't really spend too much downtime journaling - it was almost a full-time job responding to texts, comments on status messages, phone calls, etc. And then remembering to make updates on Facebook, since everyone was anxious to hear news each day. Sometimes I laid my head on Will's leg or on the arm of his hospital bed and dozed a bit. When everyone returned, we had a fun visit all together in Will's room (there were six of us besides Will - so much for two at a time!).
 |
| Alena, me, Minnie, Will, Kimra, Matt, and Jeana |
 |
| Matt, Will, Bishop |
Kimra, Matt and Jeana eventually left for Idaho, and later, Dr. Wang came in and talked to Will about how the surgery went, and said they would put him on beta blockers to make sure his heart rate never spiked in an anxious/heated situation - at least for the first few weeks. Will cannot raise his arm past the elbow and cannot pick up more than 10 lbs (so no carrying kids!) for 4-6 weeks. He has to be approved to do any type of exercise. He can't linger around metal/security detectors and will have to carry an ICD card with him everywhere - he can't be wanded by airport security personnel. He can't talk on a cell phone with his left ear, and can't work under the hood of a running vehicle. Any time he gets a shock he needs to call the doctor's office as soon as he can (or first thing the next morning if they are closed). Anytime he gets more than one shock in a day, he needs to go to the ER to get checked out.
On Saturday, I headed over to the hospital to (I thought) pick up Will and bring him home. However, I walked into his room just in time to hear the doctor tell him they would keep him overnight again, since (a) he was still pretty dizzy and not completely steady on his feet, (b) he wasn't strong enough still, and (c) they had to switch him to an oral antibiotic (instead of the one through the IV), so they want to make sure he can tolerate that before sending him home. It was definitely wise, even though Will was disappointed. So he had one last walk around the ICU with the PTs, and a last nap while I worked on journaling, and then they moved him to the telemetry floor (so he wouldn't be so connected everywhere and could move around more). He was pretty wiped out by the time they got him situated, then I ordered him some lunch and he rested on and off for the afternoon.
Almost all day, I typed away on my iPad. It ended up being a huge blessing for me to have this extra day in the hospital, since if Will had come home Saturday, I would be up with the kids all day and would have to try to fit journaling in late at night or early in the morning. It could have taken a week or two to get through the whole experience, and I would likely forget more and more each day. So even if this extra day was simply an answer to my prayer that morning that I'd be able to remember details for recording this experience for our family, I consider that worth the minor inconvenience/disappointment!
 |
| Journaling - it was chilly in his room! |
On Will's second PT walk of the day (the first on the 5th floor), the PTs showed us a huge storm coming in with lightning, thunder, and high winds. When we got back to his room, we saw that the storm was literally coming in our window, with big fat raindrops falling on the sill and getting the floor wet. They found out that all the windows on our side of the building (which wasn't shielded by another tall building next to it) were leaking. Nice! We didn't mind...we Cosmans like ourselves a good storm!
Unfortunately, though, we found out Sunday morning that the "good storm" had flooded several homes on our hill. Many of our ward members were serving selflessly again that morning, this time helping fill sandbags and assisting these other families with the damage that had occurred. Will and I did not get home until around 1:30 in the afternoon.
 |
| Going Home Today! |
 |
| Ready to Leave! |
 |
| No, Will isn't smiling...that's a wince, as BabyG is right on his sore shoulder here. |
The kids were so happy to see their dad again, but Will was so exhausted and still in a lot of pain. Minnie and Alena had talked to LG about how he would need to "take care of Daddy," so LG set right to work getting Will covered in his (LG's) favorite soft, blue blanket and making sure he had water to drink. I was hit by an overwhelming feeling, similar to bringing a newborn home from the hospital - worried I would not be able to keep everything together. The Relief Society jumped right in and set up meals for three more days, and volunteers watched LG for a couple hours on the days when he didn't have preschool so that I could get a short break each day. That first week, Will stayed home and recuperated; the week after, he put in a part-time week, and this past week, he was back pretty much full-time.
Things have mostly normalized now (Will still has to sleep on the LazyBoy at night since it hurts too much to lie all the way down, and he is still tired and uncomfortable most of the day), and looking back on all of this, I just shake my head that it actually happened. It feels like a bad dream. But it did happen, it has changed us in so many ways, and I know it will be important to look back on this experience frequently - both personally, and as a family. I plan on printing out all my status messages and the accompanying comments of love and support, combining those with printed pictures and several of the cards and notes we received, and making a little book of remembrance that will sit in our family room. As I mentioned on Facebook, every year on September 4th, we will celebrate William's "Second Birth"-day and give thanks for Heavenly Father's mercies in bringing him back to us.
In meeting and talking with the paramedics and officers who saved Will's life, and in (slowly!) distributing thank you's to as many of the people that we can who helped and supported us through this trial, I have been amazed all over again at how many blessings we have received. So many people did things they may have thought were little or not significant, but it truly added up to be a massive demonstration of love and service. Even the people who weren't local sent their messages of prayers and concern via text, email, and Facebook, and every single one of those lifted our spirits as well. It is hard to fully capture all of this without experiencing it, I imagine, but I hope these posts have given you a taste of it. No one can go through what I have gone through and not know that he or she has a loving Father in Heaven who has a plan for each of us. I don't know why we received all of these miracles when so many more stories that begin similarly end with tragedy. I have had two uncles die at young ages in tragic circumstances, and I shudder to realize how close I came to being on my own on this earth with two young children. But even then, I knew then and I know now that I would not have really been "on my own." None of us is ever actually alone. I don't know if Stephen Sondheim believes in God, but his lyrics to "No One is Alone" from Into the Woods touch my heart with truth. I will leave you with them, thanking you for taking the time to read this very long story:
Now you're on your own.
Only me beside you.
Still, you're not alone.
No one is alone. Truly.
No one is alone.
Sometimes people leave you
Halfway through the wood.
Others may deceive you.
You decide what's good.
You decide alone.
But no one is alone.
Mother isn't here now
Who knows what she'd say?
Nothing's quite so clear now.
Feel you've lost your way?
You are not alone.
Believe me,
No one is alone
You move just a finger,
Say the slightest word,
Something's bound to linger,
Be heard.
No acts alone.
Careful.
No one is alone.
People make mistakes.
Fathers, Mothers,
People make mistakes,
Holding to their own,
Thinking they're alone.
Honor their mistakes,
Everybody makes--
One another's terrible mistakes.
Witches can be right, Giants can be good.
You decide what's right; you decide what's good
Just remember:
Someone is on your side (our side),
Someone else is not.
While we're seeing our side,
Maybe we forgot: they are not alone.
No one is alone.
Hard to see the light now.
Just don't let it go
Things will come out right now.
We can make it so.
Someone is on your side,
No one is alone.
1 comment:
Thank you Gretel! So many inspiring words. Love to you and Will! So wonderful to see a miracle happen to such wonderful people. Watch for them. Miracles are everywhere!
Heather
Post a Comment