Ethan’s Journey

After Ethan was situated, I spoke with a couple doctors. They were able to do everything. They even found they didn’t need to change the  arterial line at all. Turns out everything fit. Fantastic news. The less trauma the better. Ethan’s lung pressures are high as the doctors knew. It was explained to me that ideally the lung pressure normally at rest is 25 or under, with exertion is 30 or under.  Anything over those parameters is considered pulmonary hypertension -high lung pressure. Ethan’s is about 44 at rest.  There are medications he can go on to help with that so it doesn’t damage his new heart. With this wire in, it helps them to see real life changes so they can really tweak his medications. He has had 3 doses of antibiotic for his pneumonia. He is breathing much better than this morning. He still has a fever but they are dealing with. One of the doctors I spoke with today said “we are taking baby steps, but the are going it the right direction. We have to follow ...

 Jesney's mom Yesenia suggested that I watch the Netflix special, The Secret. It basically says your thoughts and your feelings shape your life. To an extent, I do apply this method to my life already.

So this catheter lab trip is proving to be more of a big deal than originally anticipated. Ethan's arterial access is not good due to the size of the catheter that they used. When discussing with the doctor that will be doing both procedures, he mentioned removing the existing arterial line and replacing it with a bigger one to do the biopsy.  They would then replace the bigger tube with a smaller tube and feed the wire that measures pressures this lung and heart pressures. They would then leave that one in place. I asked the doctor "Why? If you are going to be doing biopsies every week for a while, why not leave in the bigger line? It seems invasive to be zinging in and zinging out all these lines, not to mention the increased incidence with infection each time something is going in and out of the artery." "Good point. (long pause) That's a great idea." He said. We chatted more and then I had to sign that paperwork that places his life in their hands and if...

 This morning has been quiet. Ethan has stirred a couple times because he is basically dealing with pneumonia with a straw in his mouth.  He coughs and has "yuck" (It's a medical term) in his breathing tube.  It plugs the tube, his oxygen drops, his blood pressure drops and he doesn't realize that he has pneumonia so he thinks something is wrong.  His oxygen level has been between 65 -90 so far today.  I don't like it at all.  I would prefer above 90 as would they, but  he is doing the best he can. They have turned up his oxygenation and given him multiple breathing treatments. He has been communicating a little bit more with yes and no questions. He has only asked for his phone once, which is pretty hilarious because he can't even keep his eyes open, his hands are tethered, his is in no shape to hold a phone let alone use it. He's a funny kid.  He so badly wants to text Jesney (his girlfriend) because he knows she is worried about him. The plan t...

HE SLEPT THROUGH THE NIGHT. No crisis situations, no 20 people running in with multiple alarms and bells going off all at extremely loud decibels. No me trying to read furrowed brows or having their pitying eyes on me. Inhale big, exhale big. But I am not letting my guard down. At one point in the night I heard an alarm going off at one point and woke up to ask if everything was ok.  His first contact provider was standing there. I said "Hey, I thought we agreed that you were going to stay out of here tonight." He laughed.  He said there was nothing to worry about he was just stopping by to check in. Ethan's fever is coming and going but they are doing daily blood cultures and treating the pneumonia.  It doesn't help that he is just laying there (geesh what a lazy kid, ha ha kidding). He is getting breathing treatments to help support him. I popped out of bed and walked down to the shower, hoping I had beat the other parents.  Have I mentioned how gross it is to slee...

Ethan's culture and sensitivity came back on the mucus he was coughing up.  It seems he has a stenotrophomonas maltophilia (say what?) infection has caused pneumonia in his lungs. Who is the dingbat that came up with that one?  Why didn't they make it a little more simple. He is being started on an antibiotic that the culture showed was effective in killing it. He will be on that for the next several days. I think today has gone well.  The only curve ball was pneumonia. They have him on breathing treatments, and do suctions a lot. They have been trying to lower the doses of certain medications.  Let's assess Ethan's last 7 days:  Cardiac Arrest Heart transplant  collapsed lung lung and heart by-pass for 5 days Stroke Blood clot in lung Blood clot in heart Another surgery to remove blood clot in lung and heart. another collapsed lung two urinary catheters (ouch) several feeding tube attempts A third surgery to come off bypass and close up chest. atrial flutt...

I got to the shower first today.  I remembered my towels and my soaps. So far this is my biggest accomplishment today. I am tired.  I had the coffee my mom made for me and just trying to process the night. I am trying to get my positive mindset in check. Groundhog's day. The surgeon came in to assess Ethan's incision.  It was covered with a dressing.  She carefully and gently peeled it back.  It looks beautiful. I told her I thought she did a good job. He was in one piece and not broken.  He still has his chest tubes and his pacing wires.  The area where they removed his pace maker and defibrillator looks really good.  It is weird not to see the square bump under his skin where is protruded. There was shift change.  Newbie is back. Newbie is a kind, gentle and soft spoken man.  He is learning but his personality is nice. They paired this man with Nurse Loudmouth Bossy-Pants. She is the type to make you aware there is a hyphen in her name...

As I watched the sun come up, I was a bit bummed about Ethan.  I slept like crap because of all the excitement all night. My stomach is off and is hurting a little. The thought that is always in the back of my mind is that he will need to be zapped on of these times and still has that clot in his heart (and brain for that matter). That’s all he needs is for that thing to break loose. What if? What if? What if? Why am I even worrying about this?  Whatever happens is going to happen. I have that anxiety tornado swirling around me. He has stepped in shit again. I have a friend that I met when I lived in Georgia. She was the one that strongly encouraged me to incorporate and adopt a lifestyle of positivity. Best advice ever. Look on the bright side. I started about 20 years ago. It was so hard. Sometimes your mind can just gravitate to negativity and you don’t even realize it. You then have to pull it back in and regroup to restart your mindset. Thank you Vicki. Let’s be clear. I ...

  Stare at the picture for a moment. Blue is the color of many favorable things. Blueberries, blue birds, the sky, the ocean 🌊. Blue offers a calming and peaceful feeling. In the picture above, none of these hues of blue offered me any sense of peace and serenity.  In fact it was just the opposite. I saw every shade of blue pictured above, in my child’s lips for a little over 10 minutes. It was like a kaleidoscope of blues washing over his lips.  Ethan had some mucus in his tube. When he was suctioned he went into A flutter again. This would be time number 4 tonight. Ethan’s oxygen level dropped to 32 for a little over 10 minutes as the team rushed to bring it up. I watched, helplessly, hoping that no real damage to him brain is happening.  There is always that worry. My heart is sad for him. Then, they ordered an X-ray. The X-ray lady popped his cooling water matt and water burst all over. They spent over 10 minutes cleaning up that mess. Have you ever tried to mov...

I ordered dinner tonight. Grubhub is a saving grace. As I have for the past several days, I received the phone call with the person saying “delivery”  and me answering “ok, be right down.” I put my shoes on lightening fast and rushed to the elevator.  I was so excited to eat.  I wait for the elevator and think about how annoying it must be for these delivery guys to have to wait for you to go to the lobby.  I get off the elevator the guy is literally right in front of the elevator which is right across from the security desk. The door opens up. I walk out.  Make sure the delivery is mine, because I almost took someone else’s delivery the other day. We do the exciting exchange of food, probably only exciting for me, and Mr. Grubhub turns around to leave.  I walk back to the the elevator and push the up button. “Miss” I hear it but no one knows me, so it can’t be for me so I ignore the voice.  Plus it sounded angry-ish, again, it can’t be for me.  “...

Getting Ethan ready to come off of the paralytic medications is quite a complicated algorithm.  There is a fine line of balancing blood pressure, blood gasses, heart rate, respiration rate, sedation, pain control all at the same time. I thought it would happen quicker.  This team is trying to preserve whatever mental thoughts he has and give him the best chance possible.  They want him sedated and not thrashing, not delirious.  Seems reasonable.  They are giving him a medication to help with delirium. This will help ward off those demented and skewed realities that he may be having. It may not remove it completely but at least they are trying to be cognoscente of his terrified young brain.  They are weaning and shifting around his medications and trying to be proactive to anticipate what Ethan's next curve will be so they can act fast. Moves and counter-moves. He is keeping the team on their toes. It's so cute.  The nurses are all following up on his p...

Ethan’s doctor’s just finished up their rounds. Ethan’s main cardiologist and his main critical care doctor have this funny banter between them. Ms. Critical Care loves to slam Mr. cardiologist.  She is pretty good at it. Then Mr. Cardiologist says something like “I just want to be clear, Do you plan on putting me in my place all day today?” She quickly retorted “yes, absolutely”. I added in towards Mr. Cardiologist “well now you can plan your day around that.” We were chuckling about it. They are like an old married couple. The plan for Ethan today is to keep flushing his kidneys, stay on top of lab work, removing the paralytic (😳) and supporting him.  They are starting him on methadone. Methadone helps with morphine addiction plus it is a pain medication.   I am nervous about taking him off the paralytic.  It is a selfish nervousness. It means I have to mentally prepare for him to be delirious which is so hard. I fear he will panic. Who wouldn’t panic?  I fea...

Before Ethan’s cardiologist left last night, he was standing at the foot of the bed. His eyes were intensely focused on Ethan’s machines.  He would occasionally glance at Ethan’s face and chest and then back to the monitor. He was silent and it was evident he was deep in thought. What’s wrong I wondered. He then locked eyes with me and said “This is what he should have been doing a week ago. He is doing great.” Deep exhale. Ethan had quite an evening. As you can imagine, Ethan style, he was busting through the paralytic medication, answering yes or no questions, he was moving his hands and feet, not too much but he was squeezing my hand. Maybe I don’t want to ground him when this is over. He is so determined. His nurse had to put in a stomach suction tube which helps to keep the acid level down within his stomach. This is fed through the nostril and sits in his stomach. She also placed a feeding tube that went into the small intestine. These things had been removed before his surge...

Look at his closed chest 😊 I was sitting in the room as Ethan was being wheeled back into his room. I removed myself to stay out of the way. He looked good as I walked by. His color was good.  His chest was together, no more “zombie from a horror film” vibe. About an hour later I popped back up and they were still working with him. His heart rate was fast 152 and his blood pressure was low, 78/36. There were many adjustments to his medications.   He does have pacing wires so they can zap him if they need to. So cool. These wires are very small and are attached to the appropriate locations, the wires exit the body. They just pull them out externally when he doesn’t need them anymore. He is down to only 10 pumps on his pump stand. His 4 chest tubes are draining at a normal rate.   There was some discussion about the pacing machine not working as it should? Well that sounds bad doesn’t it?  I looked at the doctors faces. They were perplexed but not concerned if that ma...

Ethan's nurse walked into the room while I waited for the verdict. It seemed like it took forever for her to reach me.  Why isn't she talking?  "How is he?" I asked. She sat with me and said "I want to warn you that if you cry, I am going to cry too". Oh shit. Is it worse than worst case scenario?  How? She continues with "They found a mucus plug in Ethan's lung. They were able to suck it out and inflate his lungs.  He is doing really well.  They took him off of ECMO and they are closing his chest." So the two of us sat there and cried. It was the most beautiful cry I have ever shared with anyone. Wow. Finally a break for this kid. This is what he wanted. .  Ethan had two nurses today.  One was experienced, the other, it was his first day in cardiac ICU. He has worked on the general floor for an extended period of time, but today is starting to train for cardiac ICU. This poor man is getting hazed today. H I walked down the road and found a tee...

So this morning was another shit show. X-ray came and showed that Ethan had developed another collapsed lung as well as fluid in his lung on the right side. What the heck, he was doing so well. So they decided they were just going to move quick.  They started to wean him down on ECMO bedside instead of the OR. As they lowered ECMO, every bell and whistle went off.  His blood pressure went all wonky and his heart rate jumped to 170. So there were a couple of people calling off different orders to see if slight changes of this medication or that medication would support and stabilize him better.  Trial and error essentially. Let's add in a little dash of Ethan busting through the sedation AGAIN. This kid! True Ethan form. What a damn show off. The anesthesiologist said, "what is he on right now?" "Morphine, Dexdmedetomidine, Fentanyl and Midazolam." said the nurse.  "Wow!" said that anesthesiologist. "He should be knocked out." Ultrasound was t...

I forgot my towels again today. Luckily the nurse saw me do it yesterday and she asked me if I had my towel, knowing I did not.  I thanked her because I didn't want to relive yesterday again.  Got down to the shower.  FIRST ONE!!! Yes!  Came back from my shower, was putting my stuff away and making my bed when I realized, I forgot the damn soaps again. So back down to the bathroom I go.  Someone was in there. I did the walk of shame to my nurse and told her if she sees them in their lost and found, to grab them for me. Please tell me this stuff happens to other people as well. Last night was not as restful as I had hoped.  Even with the  sedation drip to all the other sedation medication, Ethan is still busting through it like the Kool-Aid guy through a wall. When he is waking up, he is trying to pull himself up to sit up. There were a couple times the nurses were trying to run and get even more medications to help calm him down.  He has resorted ...

 This afternoon was quiet.  I enjoyed all my well wishes texts.  It gives me something to do in the down time. Ethan slept for 5 hours straight. I was afraid to move a muscle. I didn't want him to stir as he needed his rest.  He woke up about 6:45.  His nurse gave him a dose of sleepy medicine.  He didn't go to sleep though.  He became his father, trying to talk with his hands so much they were becoming weapons.  He was confused.  He kept reaching down and grabbing the sheet.  I asked him what he was doing and he mouthed "getting my phone".  "Ethan" I said, "you don't have any pants on."  He needed to feel his skin to know he didn't have any pants on. He also was trying to tell me something that was something I needed to know in a hurry. He was writing letters with his fingers on the bed, for me to guess, so fast he was going to start a fire. I gave him the white board as that has given us the most success. He wrote this: What ...

Well rounds this morning were a shit show. What a mess. Of course they would have them when I was on a zoom call with my family.  At least I got to see everyone even if it was briefly. I went out to rounds and they started going over everything.  Ethan has one job and it is to be still. He is not to pull on anything.  He is not to move around. I also have to watch him because he is horrible at doing his one job.  I look over during rounds and his knees are bending and he is pulling on tubes.  Keep in mind that a couple of these tubes, if pulled, he would bleed out very quickly. NO BUENO!  I had to step away from rounds because I saw movement. I ran in his room and he had disconnected one of his chest tubes.  It was at a part outside of the body, down about 18 inches from his chest.  It was making this suction noise.  I start squawking at him like a damn rabid crow. I quickly reattach it.   When I let his nurse know she said " that i...

  It’s rainy today. It’s grey out. Ethan had a restless night. I have figured out that if  I am the first one in the communal bathroom, I get it when it is clean. So I woke up when they came to do Ethan’s xray. I was so proud of myself I figured this out and that I wouldn’t have to brush my teeth with hair in the sink, or someone’s old wad of toothpaste sitting at the bottom of the sink glaring at me. I grabbed my clothes and my shampoo and walked with a giddy up in my step. I was looking forward to drinking the coffee mix my mom made for me. It’s very comforting and delicious. I got to the bathroom. I see the door open. YES! Score! I get in there and brush my teeth all happy with the cleanness.  I get my soaps out and get undressed (don’t be perverted about it) turn the water on.  As I am waiting to get in the shower I set my towels on the tall stand so they don’t get wet.  Wait.  Where are the towels? Are you kidding me?  I forgot my towels? I looked...

Last night I was getting ready to go to bed.  The room was dim, Ethan was zonked.  I received a visitor. It was Ethan’s surgeon.  He came just to say hello and see Ethan.  He said that he has never seen a kid on ECMO be so awake before.  It is unheard of.  It is the buzz in ICU. This just speaks volumes of Ethan’s attitude and drive.  I thanked him for his magical hands and his great craftsmanship with Ethan’s new heart. Ethan woke up in the night.  He was in pain. It seems his body is acclimating to the morphine and fentanyl. He wanted to get up because he had to go to the bathroom. I had a brief mental image of what that would look like with his chest open.  His insides would be on the outside.  Yikes.  What a mess. No.  Let’s not support that idea. I was trying to describe to him that he had an external catheter and he could just go.  But he was worried he would wet the bed.  He also is realizing that he has been i...

Because of Ethan’s stroke and true fact he is having some weakness, Physical therapy came to fit Ethan with some snazzy boots. They sort of look like Moon Boots. Moon boots were all the rage when I was in my single digit years of life. They were like marshmallows for your feet. There was a bit of a design flaw because I always had to put a bread bag or shopping bag on my feet to keep them dry. These boots are to help his feet stay in position and not lose memory so it is easier for him to walk after his next surgery. They keep telling me either Friday or Saturday. He also got a fancy wrist brace. His super hero bullet proof wrist brace.  Well maybe not bullet proof but I will tell him it is and he is being a super hero. So it works. The blood gasses they took while Ethan was mostly off ECMO revealed that his lungs aren’t quite functioning as well as they should and they need just a little more time. They are not going to start to wean him off until tomorrow. None of the staff can b...

 Ethan is continuing to try to communicate more and more. We haven’t found a great way to do it yet. We have tried an app.  We tried paper and pen, we have tried a white board and dry erase marker, I pad....keep in mind this kid is busting through a good dose of morphine and fentanyl to do so. He was really getting frustrated when I couldn’t understand his charades  of pointing at the TV. Finally after an hour or so....I realized he wanted the TV closer. It makes me wonder how his eyesight is. I wonder if it is affected with the sedation. If his brain to eye connection isn’t as fast. He was holding the letter chart I told him to spell out what he wanted and he was not able to do that. Time and less sedation will tell if and how he can be supported. The ECMO team, together with cardiology turned down the amount of help the machine was giving Ethan’s heart and lungs. They watched via ultrasound how his new heart responded. It was very encouraging and they thing over the nex...

Ethan’s nurse overnight gave me the ultimate compliment. He said that when Ethan was getting frustrating this morning that my voice was very soothing and it even made him feel more calm. I am going to add that to my resume. Maybe I can make my own “calm” app. And just soothe people all day long. Ethan has been coherent more today. He even needed a little extra sedation because he was “pushing through” the morphine.  He hates his breathing tube.  He has asked for it to be removed multiple times. I don’t blame him.  He really hates the daily floor cleaning Zamboni. It is too loud.  He flipped off the zamboni when it drove past his room. I have since closed the door. He doesn’t like noise. Never has.  He was the kid who brought ear protection to the movie theatre. He is still asking for his phone which “needs to be charged”.  He also did a good job communicating his feet were cold and he needed socks.  His nurse had to go find the biggest pair she could. ...

  This is his brain machine.  Things are working in there. Ethan had a quiet night. They hooked him up to brain machine to be sure it still works. I know it does. Ethan was calm all night. He had a male nurse who was absolutely wonderful.  All the nurses here are excellent!  When Ethan did wake up, he was trying to communicate. It is impossible to read lips with a breathing tube in.  I untied his hand so he could write after multiple failed attempts of trying to guess what he was saying. He wrote very clearly “who is that man?” I told him it was his nurse. His nurse and I both chuckled because this has been his nurse for almost 12 hours. Then Ethan wrote “thank you”.   He also was able to write “did I have the transplant?” Which means the sedation they are using will offer him some amnesia and he won’t remember yesterday’s events. Phew. He is getting uncomfortable since he has laid flat for so long. They have been moving him around to try and avoid bed sore...

 I am feeling better. This afternoon has been mostly good. There have been a couple times Ethan has tried to swing his legs over the side of the bed or prop himself up.  Keep in mind his chest has an incision in it, through his sternum with nothing but a thin piece of transparent sterile dressing. It’s about 9 inches long and 3 inches wide. He has 3 chest tubes draining and the ECMO tubes coming and going along with the multiple  IV’s, breathing tube etc.  If he tries to get up he is going to do some real potential damage. He wants to communicate but is frustrated that he can’t. He can’t even make a sound but is trying to scream. The nurses needed to remove the urinary catheter so that it could avoid causing an infection.  As you could imagine, Ethan is modest and private.  Keep in mind he is mostly non responsive. Occasionally I get a glimpse of semi coherence. The nurses removed the catheter And he was immediately very upset and rightfully so.  They ...

 Ethan has had a multiple of people doing neurology exams. It involves having him squeeze both of his hands, lift both his legs and look left and right. Keep in mind he is cooperating and able to do a fairly decent amount of what they are asking while he is heavily sedated.   They needed more information to determine if they were going to go in and remove the clot or do extra imaging or just supportive care. They decided they needed far more information and the test they did under sedation needed to be repeated with less sedation meaning he would feel pain and be more awake. He became more responsive and did pretty well with the exam. He then was trying to communicate. He started feeling the pain and it became so overwhelming and he started sobbing. His arms and legs were moving as he was writhing in pain. He was trying to get away from himself. He couldn’t even make a sound, because he has the breathing tube in.  I was not ready for that. I can handle most things but as ...