Ethan’s Journey

Ethan had a good night last night. He did wake up wondering where I was and the nurse assured him I was sleeping on the window seat. The heater broke on the ventilator on Friday, so every 8-10 minutes it alarms.  All day, all night. Ugh! This morning Ethan seemed down. He finally wrote on the white board and asked if he was on life support. I felt sad that he feels he is not getting better, when you can see a visible difference in his appearance day to day. I told him how sick he was and how far he has come. I assured him he was not on life support. He then wrote “should I be?”.   I put myself at age 17 and remembered what my worries were at age 17. Life support was never even on the radar. I again assured him that he was not on life support nor would he be put on life support because he is getting better. After some time alone with his thoughts, he wanted the TV on. This I took as a sign that he was done processing his thoughts for now. There really is no handbook for how to ...

I was first to the shower. Perfect way to start the day. Our day nurse brought me a glorious coffee. In this drink exchange, I shared with her a sparkling water. Not nearly as exciting, but sharing is caring.  My RT buddy is MIA. I am going to have to give him shit the next time I see him. I am going to need a written schedule of his days off so I can mentally prepare.  Ethan had a quiet evening with some visits from all of his nurses to say “hi” and to see how he is doing. I was reflecting on how relieved I am that Ethan has started to communicate how he is feeling. Our visible scars can heal, but mental scars can be long lasting. We need to heal and cope with all the scars. Last night Ethan had an interest in hearing about what he has been through. With all the pictures and videos I took, we began looking at the pictures and I was telling him about all he has been through. I think it was helpful for a little bit.  I must have gotten super boring because he fell asleep w...

Ethan had some pain last night from his procedure. Add that to the damn tube he has had in his mouth for 10 weeks and it is hurting his throat. He has wasted away to make his bones prominent so they are bruising from laying on them for so long no matter how many times he is turned. He was super frustrated with his situation and rightfully so. I asked him if he needed more pain medication and he looked at me with large, sad distant eyes and I knew the answer was yes. I know Ethan does not complain much - and when he does, to listen. He had complained about his throat. As he was trying to decide if he needed more pain medication, I was already asking the nurse for some for him. I looked back and he was nodding yes. He had a new nurse, which has helped with him several times.  A familiar face, but has never had his case. He got some pain medication and I decided that to go to bed (before 9). Around 9:30, I hear someone calling my name. I had ear plugs in. I opened my eyes and was gree...

Ethan was so tired this morning. Likely because of his big day yesterday. He was immediately put on spontaneous breathing until about 10:45 am. This was to exercise his lungs.  PT/OT came right at 8:30 am. They were ready with a Lincoln Park play list. His PT shared he used to have long hair and headband to Metallica.  With the motivating soundtrack pumping through the room, they sat Ethan up. They had Ethan sit for several minutes. He is skin and bones so he gets very sore from sitting too long.  He has protective bandages over his protruding bones to help lessen the pressure bruising.  Even with his Rolls Royce Air Bed, he still has bruising. He had minimal help while sitting. Then, with his sound track bass pounding through the room, he stood more squared off and straight than yesterday and for the longest time yet. He and his 3 medical staff members were bopping their heads along with the music.  He then sat down for a few minutes. Everyone in the room was c...

 Today will be my last routine morning post. Ethan had a decent night. He had his bath with heated towels (spa routine). He did feel nauseous this morning but is feeling better now. He is frustrated with his current situation and I think he will be so much happier with this damn tube out. We scheduled an early PT session before his procedure. That will likely cheer him up. Who knows what is in store for us today.

Ethan has been a bit sleepy today. Probably because of all the PT/OT he did throughout the night. At rounds today it was discussed that we would continue weans and we are down another pump!  One of his sedations is done. Woo hoo!!!!! Tomorrow Ethan is having a procedure done to relocate his dialysis access. It will require going down to a different floor and be sedated. They are moving it from his groin and relocating it to his chest. They are doing it to gain him mobility as well as it has less of a risk for infection on his chest. He had to have a stupid covid test today to make sure he is negative. Really? At the procedure tomorrow, he will have the second pacing wire that he didn’t savagely rip out of his heart, removed in a safer way. Today we had to wake Ethan up when PT/OT came. He was so tired. He kept yawning. He had been breathing with minimal support for 6 hours prior to his therapy. It was coordinated and he had lots of support.  He sat up and then worked on standi...

Ethan didn’t sleep a whole lot last night which is odd considering he was breathing on his own all day yesterday and with the standing, I would have thought he would be exhausted.  We are weaning down the sedation so maybe he just doesn’t feel as tired? His nurse said he was doing his PT off and on all night. What a kid.  It is nice that all of his previous  nurses make it a point to stop and say hi to him. His X-ray looked worse today. I am disappointed. He doesn’t have a fever.  He was weaned on some settings on his vent so maybe that is why? It’s not terribly worse but a bit more white than I would like for him. I am excited to see what today is going to bring. More standing? More breathing on his own? Who knows. He seems pretty unstoppable though.

Today was a really good day. Each day Ethan gets a little stronger.  Today another vent setting came down. Ethan also had another spontaneous breathing trial. He did it for 7 hours. Which means for 7 hours he was doing the work, not the vent. Ophthalmology came and made sure his eyes were ok. They are. They do want to use steroids in his eyes but won’t until we get close to discharge. This is because his immune system is already compromised and puts him at risk for an eye infection. Ethan’s eyes also started doing a new thing where he is looking straight ahead, but one eye (not always the same eye) wanders off to the side. The ophthalmology team thinks that this is likely a side effect of sedation. Ethan did the most wonderful thing today. When he sat up on the edge of the bed, we had a drum roll and he  actually stood up. He stood for a couple of minutes. He then sat back down on the bed for a few minutes. His PT car buddy asked him if he was going to stand again and he shook...

 I got the most beautiful message last night from Ethan. My heart melted. Being thankful and grateful is one piece of the happy life puzzle. He has that piece in place.  I told him we were a team and that we were going to take our time healing. He wants to leave.  He has said it several times. That is his drive. He had a good night last night and I slept in this morning until 7:00. We will see what today holds.

Paul and I decided we are going to give up the apartment. It is three times the cost of our mortgage and I rarely utilize it. We will be asking people to refrain from sending anything to that address from here on out. We appreciate all the gifts we have received, thoughtful letters and goody packages.  I have started really getting nervous about having to move all of our things by myself. When we came to the hospital, Ethan and I both were loaded up with our belongings. He was able to help. Now it falls on my shoulders and I am not sure how I am going to pull off carrying our stuff as well as a sick kid on our transfer to the inpatient rehabilitation center. I met with a social worker that shared we would be transferred in several weeks to an inpatient rehabilitation center by ambulance. Ethan and I will be able to stay together (because there would be no other option in my book) while he gets his strength back and works on doing everyday tasks. We have a number of goals to meet pr...

 Ethan woke up asking when he was getting his breathing tube out.  He also asked when the PT guy was coming because he wanted to walk today.  He is now writing which is a blessing.  He did write “I hate this.” He is frustrated. We went down another notch on his sedation today.  We discussed all about what needs to happen for him to get his tube out. He totally disabled his phone. The iTunes password isn’t working and Apple support was no help. So I currently have reached out to Apple to see what else can be done.  That was its own shit show.  Still in progress. He had a good night. I had a good night. Hoping for more progress now that we have a full 24 hours on antibiotics.

Ethan rested a lot today. He is pale. He seems weak. But man did he do his best to do PT this morning. We have done little bits here and there. He got another transfusion early afternoon to help him feel better. They came and plugged him into the blood.  Ethan asked to have his stroke boots on.  He actually doesn’t know he had a stroke yet. So we just call them boots. So I strapped them on which is like trying to put lace up boots on a moving octopus. All the Velcro straps stick to themselves, I rip them off and then they stick to the blanket, or the bed or the fabric on the boot. I often end up saying a string of bad words while trying to put these stupid things on. I finally got both pair of boots on. Phew. I to wash my potty mouth words out of my mouth and take a nap after that. I then apply the artificial tears in his eyes and he starts pointing to his foot.  “What’s the matter?” He mouths the word “boot”.  “Your boot?” I ask.  He shakes his head yes. “You w...

  Ethan had a little bit of trouble last night, nothing overly alarming.  His blood pressure was dipping low and he looked pale. I requested a CBC and asked about a transfusion. He just looked like he needed blood.  He didn’t sleep well because he was sore from sitting up for so long. He has been stretching himself in bed. He has been quite restless so I assume he is going to be zonked today. Ethan’s nurse said that Ethan was full of hugs last night and was hugging everyone. If they walked near the room he would summons them in the room for a hug. He is so much NOT a hugger, I am starting to wonder if his stroke altered his hug center of his brain. I just made that up but who knows. Again, I love all the hugs I have gotten.  He has been unsettled with all the IV’s and Picc lines. They are bothering him.  I saw Ethan’s xray this morning and to me it looked like maybe the lower left lobe has collapsed.  Perhaps they will go back up a little on the vent settin...

Ethan sat up today for 6 minutes. He did let me know he was sore when he woke up this morning. I told him we could skip sitting up if he was too sore and he shook his head NO!  His nurse asked him if he was going to sit up longer than 5 1/2 minutes. He shook his head Yes.  We told him he better rest up for it and he took a bit of a nap. At 11:00 am a few ladies, which were prearranged by his nurse, came in to help. All have worked with him before.  We had to pry his cozy blanket from his boney fingers. What he didn’t know, was I wrapped the blanket around a heating pad. The nurses slowly sat Ethan up and he was told to sit tall. One of the nurses was massaging lotion into his back. We were all cheering him on. It got to 6 minutes and he turned into a folding chair. With a new high record, he laid back down. He gave out some hugs for helping, which all the nurses were so appreciative of. He immediately wanted his blanket. He gets very cold because when Janice is done clean...

He can’t put in his passcode yet, but holding his phone offers him comfort. We had an exciting last night. In addition to watching Ethan’s blood pressure for signs of tamponade from removing his pacing wire like a savage beast, Ethan decided to be on the move. He was holding his spritzer fan and he dropped it. I was sleeping. His nurse was sitting outside the room. She heard the breathing vent going crazy, beeping and dinging and alarming like crazy.  She rushed into the room. Ethan had turned himself so much that he was face down and disconnected from the breathing machine. His breathing tube was in tact. Wean sedation a little and this kid starts rolling around the bed like the Incredible Hulk he is.  Except he didn’t have the strength to correct himself. He was a turtle on its back. His nurse helped him over and reconnected him.  I remained sleeping with my ear plugs in and my headphones playing a soothing babbling brook sound.  I could poke fun at my parenting sk...

Ethan’s OT came in first thing this morning and said “I made him a sign!”  She whips this awesome and thoughtful sign out. “It’s Perfect!” I said. I hung the sign up for him to see. When I pointed it out to Ethan, he read it and smiled, then gave a thumbs up. At rounds today, it was brought up how Ethan sat up yesterday for 4 minutes, apparently an impressive amount of time for the first sit in 8 weeks. One of the critical care doctors starts telling the story that she walked around the corner and saw a crowd gathered around Ethan’s room. She immediately rushed to his room, knowing that the last time a big crowd was around his room, he had arrested. People were trying to warn her that it was ok but she was “panicking” and wasn’t really listening. As she peaked in the room she squealed “Oh my god! You are sitting”. She was so surprised! We all started laughing as most of the people remember the crowd outside our room and what a crap day that was. Yesterday was such a joyous and fun ...

Ethan had a night where he was a little bit fidgety and restless. His nurse suggested maybe he is being weaned a little too quickly from medications. This is the same nurse that gave Ethan such a lovely, super soft blanket that actually covers his feet! A kind and priceless gift. A gift that pushes me to want to be a better person. A random act of kindness can mean the world to someone. Seeing Ethan touching and wrapping himself in the blanket is such a gift in itself. To know someone thoughtfully took time out of their day to offer him some comfort is just so heartwarming. Avery and I are making a plan to help out the food shelf when I get home. We have some ideas of supplies that may offer comfort to those in need right in our community. My mom has been helping out the food shelf for years.  Don’t worry mom, I will call you for advice on this. My awesome day nurse brought me a large Spanish coffee and it is divine! So thoughtful! My back is still giving me trouble. Ethan’s nurse ...

This is Ethan SITTING!!!!! The most glorious thing happened today!  OT came to stretch and move Ethan. Then OT and Ethan’s nurse started whispering and talking quietly. Then OT disappeared and returned with one of the doctors.  The doctor came in the room saying “It’s ok with me if it’s ok with Mom.” Nope. Not falling for this one. I am going to need to know what I am agreeing to. “What are we talking about?”  “We are thinking about sitting Ethan up on the edge of the bed.” What?!?!? “It’s ok with me as long as it is safe.” The RT came in. His nurse, his OT and the doctor were in the room.  Ethan was briefed on what was going to happen. He nodded to indicate he understood. His rules were that he couldn’t pull anything and he had to let us know what he was done. They also let him know how he would feel during and after. All things that Ethan needs. Before it started, Ethan’s doctor said “Ethan you are going to need a catch phrase like.....” he paused to come up with s...

Ethan strong! Ethan had a decent night. He slept.  I slept. My back was killing me but I am doing lots of stretching. The nurses are sneaking me hot packs. As soon as I woke up, the nurse told Ethan, “mom’s up.” Ethan motioned for me to come hug him. Of course I painfully obliged. Cause who could turn that hug down? He then wanted me to sit with him on the bed. Which I painfully obliged. Our nurse today is one we have had many times before and is at the top of our preferred nurse list. She brought me a Spanish coffee. She said she only got me a small in case I didn’t like it. I laughed.  “Coffee I don’t like? I am not sure that exists.  I don’t care for coconut coffee but will still drink it.” It was divine. It is espresso mixed with condensed milk. Glorious. It was like a warm comfortable blanket for my mouth. It was so thoughtful of her. It’s amazing how good you can make someone feel or how much you can brighten someone’s day with a beverage. I went to the shower late ...

During Ethan’s Echo, I was allowed to wait in the nurses lounge.  The nurses lounge is the “used to be” parents area until covid hit. Well what a glorious treat!  The sun was shining, the view was amazing. I was alone.  No other humans. Wow! His echo came back that he still has high pressures within the heart. This new heart has now adapted and the function is much better!  Woo hoo!!! Ethan’s xray had more fluid in his chest today than there was yesterday. Janice has some work to do today. Rounds happened. We are going to slowly wean the sedation down a teensy bit today. OT/PT are coming daily and  are so pleased with Ethan’s strength and participation. Even the critical care doctor says she was surprised at the report PT gave the day before about how strong Ethan was. He tries so hard to stay awake for 20 minutes. He sometimes falls asleep during it but tries so hard to show how strong he is. And STRONG he is!  Ethan proceeded to charm everyone. He hugged ...

 Last night I went to bed very early my neck and back were so sore.  It was so loud. Things were slamming, pumps were going off. I could hear it all above the ear plugs and white noise head phones and a pillow over my head. At 3:00 am Ethan woke up and was beside himself. The nurse tried so hard to calm him down. I heard her talking to him and popped out of bed. She said “He wants Mom.” I went over to the bed and saw him so upset. He saw me and put his arm up wide in the air and signaled me to come in for a big hug.  As I was hugging him, I could hear the rhythm of the breathing machine change. I looked at him and he had his face crinkled up just so sad. He started pointing, rather aggressively, towards the bed. “Do you want me to sit in your bed with you?” He shook his head yes. His nurse moved him off to the side.  She then helped me ninja my way through all the cords and Iv lines. I got into bed with Ethan. He leaned his head towards me and almost immediately fell...

This is how close Ethan and I were the entire day. He slept well. If I got up, he would wake up. He had his arm around me. It wasn’t overly comfortable but we made it work. Today Ethan had a PT/OT session with me he fell asleep afterward. He really has enjoyed knowing I can now sit in the bed with him. It is quite uncomfortable with my back, but will continue to lay with him as long as he wants. Then Ethan’s PT buddy showed up and did a 20 minute long session with him.  We are going to set up maybe a few visits a day. It was officially said today at rounds that he is going to work on moving toward extubation in the next 10-14 days. They want his strength even better. They are going to do baby steps with the weaning process. He will get more vent settings weaned.  He will get his sedation decreased a smidge.  He is going to get a higher dose of delirium medication. His feeds were started again at a much slower rate. They are coming up with options to get him more protein....

Ethan’s belly regimen was successful last evening. He was able to rest all night comfortably. This morning, I woke up and he was awake. He wanted a hug as soon as he saw me. His arm came out and he was moving his fingers To signal me to come closer. My back was quite sore this morning after over helping move him over the past several days. We then hugged for a long time. I totally loved it.  Our nurse snapped a picture of us. Ethan’s nurse scooted him over so it was more comfortable to hug him. I am currently sitting in his bed with him while he sleeps. His bed is WAY more comfortable than mine. We went over all his machines again and the same ritualistic pep talk. We both had rest last night but man I am sore. Today will be full of stretching, lots of stretching. My bright side is all the hugs.  I love them.  

Ethan was a little delirious this morning but it seemed to settle down with medication. He ended up getting upset (he can’t remember what all the machines are for or why he still has the tube in).  I ended up giving him his pep talk about what a great job he is doing. A nurse came in and showed Ethan’s current nurse, Ethan’s Instagram page. Ethan napped off and on throughout the morning. I noticed he has started to collect fluid again.  It likely is because stupid Janice broke last night and they did another diuretic challenge. I met with the renal team to asked if we could skip these for now as it is evident he still needs the dialysis. The doctor said she was going to recommend that at rounds today and agrees he is not ready and it is counter productive at this point.   Ethan did urinate with the challenge. Who knew urine would be so exciting to see? I mean I saw it and was clapping and cheering him on. I wasn’t the only lunatic engaging in this behavior. I have been do...

 Ethan had a restless night. His fever went up to 102. He was weaned down a little in one of his sedatives. He misses it. We are going to have to suffer through these bouts to get through this. They are exhausting. Ethan is smart. He tries to inch his way from one side of the bed to the other to get off. I finally put the guards on the bed knowing it is against hospital policy, just for piece of mind. He was trying to hoist himself out of bed, on a healthy dose of sedatives and pain killers, dialysis and a breathing tube, he didn’t care, he was leaving. Except, he wasn’t because his mean mom made him stay in the bed.  I did end up putting myself in time out for a few minutes to regroup with my frustration. When I sat down the nurses stepped in and took over. It was so great. Xray this morning was a bit of a circus. Ethan is moving all over the bed, not being still. He earned a second xray because his stomach was so distended. He is just not fond of the bathroom situation. I fe...

Today has been very busy. I have not been bored at all. Two hours this morning were spent medicating, turning, PT/OT sprinkled in with explaining machines and what medications were for. We also tried the phone again at Ethan’s request. He can’t even hold the phone with one hand.  His vision is off because of the  ointments and medications he is on. He didn’t even realize I gave him my phone instead of his.  The nurse has me doing a few of his treatments because he just cooperates with me a little better. We have a system. I do find that if I do more explaining before administering the medication the better. The nurses are zipping around and I have the time to talk through it with him. It also makes me feel like I am helping him. So I like that part of it. He has given me a few hugs today.  I feel like each one is a special gift. There is a reason this kid is here. He has “died” twice. There is something he needs to accomplish and fulfill.  The hugs are usually b...

Well, Janice shit the bed last night, again. They decided to try the diuretic challenge early. This included getting a high dose of diuretics to see if he makes an appropriate amount of urine. His kidney has been rested for a bit. He did not respond to the challenge the way they wanted. He did not produce as much urine as they wanted. They will rest his kidney longer and try again later. Ethan had more sedation lifted (a very small adjustment) and he is a little more alert. He is a bit confused. He is not delirious anymore. He is able to communicate a little bit. He wants his phone. We are back to that. He can’t see with all the drops and ointment we are putting in his eyes.  I took a picture of the password screen on my phone. When he went to touch the screen, he wasn’t even close. His depth perception is way off.  He is getting frustrated with that. I remind him that he is on lots of drugs that are going to good his brain up a bit. Also, he has eye ointment that makes everyt...