Ethan’s Journey

Ethan has broken Janice. Not really. Janice just started making Janice noises and then threw an error code about pressure and she just went on strike. What a bitch she is.  “Ugh! Ethan broke Janice.....Does insurance cover that?” I asked sorta kidding but not really. Ethan’s doctor chuckled and said “Awe don’t blame Ethan for this!” Phew...I am off the hook for this machine. Turns out the doctor thinks the issue may be positional with Ethan’s IV. The nurse and I had just given him a boost and he was coughing which could have jostled some things. This means Ethan will ring in the New Year with paralytics on board. If you are going to party, party with paralytics am I right? Who’s in? The paralytics will keep him from coughing and moving so Janice can do her job. I think Janice is faking because it’s a holiday. I told Janice if she didn’t knock the crap off, I was going to arrange for her to go to the junk yard to be scrapped. All of this was happening during a shift change. Ethan’s nigh

 Let me introduce you to Janice AKA dialysis machine. “Janice” has been started. She is loud and very much annoying just like Janice Hosenstein. Ethan has been in pain today. He is wincing and crying out but has no noise because of his tube.  Ethan has not been like he normally has. There has been a change. He is less aware. He is not communicating as well, but not necessarily delirious, and out of sorts. Add in the pain he is displaying and it was making me want to vomit. The doctors and I had a discussion regarding his sedation/pain medication and what is best to keep him comfortable. Seeing his face crumple up in agony is one thing that sends me into a tailspin of  mental distress. The doctors initially wanted to go up on the drug that made Ethan’s delirium significantly worse. I told them I wanted to avoid increasing that medication if at all possible. The one doctor had forgotten about his delirium. This is why I am afraid and anxious to leave. It’s not the doctors fault. He has m

“Janice” from friends So we just monitored last night. I think there was very little change. I am sad Ethan’s night nurse is off tonight. He has been so wonderful.  Today we, from what I have been told, will be starting the green machine, dialysis machine. I like to call it the lean, mean, green machine after a fan favorite big wheel child hood toy that gave a bunch of us kids hours of enjoyment. However, our new day nurse just told me, the machine makes super annoying noises (oh good more noises) and they all have dubbed the machine “Janice” from friends.  Right now we are waiting on machine setting recommendations. I am not extroverted. I can be chatty with people I know and am fond of, however, I do gain energy from solace and quiet time, none of which I have here. I have found a new hobby of trying to learn names (man I suck at it) and thanking anyone who has helped with Ethan’s care. I save the biggest and most cheerful “good morning” wishes to the ladies that come in and take the

So I inquired about getting this show on the road with dialysis. I feel it is inhumane to let Ethan continue down this stagnant path he is on.  The paperwork lady came in to go over the risks and benefits. Sign my life away. As the paperwork lady was going over everything, the critical care doctor walked up and said he had just gotten off the phone with the renal doctor. She was cautioning to give it a little more time.  The critical care doctor asked me how I thought Ethan has done over the last 24 hours.  I evaluated each and every aspect of what I had seen. He is still swollen. Even with increased diuretics. His oxygen levels are still low even with higher vent settings. We had to go up and not down on the vent settings. They are suctioning old bloody secretions from his tube a few times an hour which obviously pains him. His renal values have crept up from yesterday. There is no solid answer that anything has improved but maybe his delirium and even that is only slightly. So my ans

Ethan had a quiet night. He had his typical wakes for suctioning. He did have some oxygen dips overnight. His X-ray of his lungs looks very fluid-y. I think dialysis is a go and I am glad. I feel like maybe this will help him feel better and while it comes with its own list of pros and cons, the pros outweigh the cons.  Maybe this could be the help he so desperately needs. This poor kid. At one point Ethan woke up in the middle of the night. They decided to give him a bath and change his sheets which also involved removing my awesome bandage. The bandage I put on had helped. I listened to them examine my bandage and compliment it on it’s accomplishment. Then they were trying to figure out how to duplicate it.  I told them that I was feeling helpless but that putting this bandage on and seeing the results made me feel at least a little useful. I then went over and started going through the drawers to pull out my bandage material. I showed them how to put it on and (there were three of t

The number circled in Red is Ethan’s oxygen level. Should be between 95-100. I have had a few different people call the floor laundry is on to see when it will open again. I was hoping the squeaky wheel would get the grease. I can go back to the apartment but I get anxious being away. I hate to think Ethan waking up and not being able to communicate. I now know some of his usual requests.  Turns out, the Health Department needs to come in and approve them re-opening. Geez, the diarrhea virus is no joke. Apparently it spreads the diarrhea virus. Ew! Ethan hasn’t peed much today. They gave him extra diuretics too. Sigh.  Ethan’s nurse was new today. We have not had he yet but she has come in to help a few times. She is strikingly beautiful. I was able to show her the technique another nurse used to reduce fluid collection using a specific pressure bandage. She had never seen it before and I told her I only saw it done once but we could try and if it didn’t work, we are no worse for wear.

Rounds happened.  So Ethan’s x-Ray improved slightly. Due to the recent events or the increasing kidney values, the renal team came to rounds this morning. I saw 14 people at rounds and my heart sank a little. The latest determination is that Ethan’s kidney(s) suffered another “injury”. They are thinking it happened the other morning when I thought we were going to have a repeat arrest. Ethan pulled out of it on his own but they think his kidneys were already suffering from the first time around and that sort of kicked him while he was down.  What’s happening is that his kidneys think he is dehydrated because they aren’t working so well. Since they aren’t working so well the fluid is going to his heart and lungs and every other place in his body. His kidneys think they don’t have to work as hard because he is “dehydrated”. It becomes a vicious cycle. The renal doctor explained that they were going to give him one more day to see what he does.  If he continues to decline, they are going

I was able to go back to bed and catch another hour and a half of sleep. I have just had a morning of tears slowly plunking down my face. I look at my kid and he is just so swollen. His left arm is 2-3 times the size as his right arm. He has about 22 # of excess fluid in him. It’s all over.  Right arm Left arm His kidney levels are rising and of course I know enough but not enough. My mind is racing to bad things and worry. I had the critical care doctor come and just talk me down a little. “I am really worried, this is bad news in animals. How concerned should I be?” I asked her. She reassured me that yesterday there was a lot of suctioning done. There is a chance he is just irritated or a blood vessel was nicked during suctioning. She also told me they adjusted one of the vent settings that will help with if there is a slow bleed.  I asked about his heparin. If he has a bleed, blood thinners could make it worse. I was assured that his heparin level is therapeutic and the amount of bl

 Ethan was very unsettled last night. They also had to suction his lungs a lot.  He now has frank blood coming out. That is not good. His heparin dose was checked and all the work we have done coming down on the vent has been reversed. I am a bit disappointed and frustrated but understand this is his road. This is his pothole. I just hate to watch him go through these set backs. I just feel sad. We as parents are supposed to make things better for our kids and I can’t right now. I know we are where we are supposed to be and he is getting the best care, blah blah blah. I just feel sad for Ethan. The critical care team was considering increasing his sedatives and possibly putting him back on the paralytic, so we will see where the day takes us. He is still holding onto a couple liters of extra fluid. Of course that is in and outside his lungs. It makes it harder for him. I was able to get a couple hours of sleep in a row last night. I still feel foggy headed though.  My eyes are tired an

 Today’s X-ray report: “ Worsening aeration lungs with confluent hazy airspace opacities present bilaterally, favored to represent worsening pulmonary/alveolar edema. Superimposed infection should be excluded clinically.” I am a bit bummed about all the fluid this kid is retaining. His X-rays are seemingly worse due to all the fluid retention. They are switching up his diuretic protocol because his kidneys have become unhappy again. Flush the kidneys, remove all the extra fluid. This kids belly button has disappeared. He has a large abdomen and his arms and legs are full of fluid. If you squeeze his arm to much your hand divot will stay on his arm. Hoping to see more improvement with fluids going down over the next day or two. His Echo revealed that the right side d heart failure is in the mild to moderate category which is relatively unchanged. His pro bnp test came back 23,000, it should be less than 250. But it is coming down, it was higher a few weeks ago. So this is good news. Eth

Last night was a good night. I didn’t sleep much, not because of Ethan, more from all the beeping machines. Ethan woke up a few times and his delirium is still there but MUCH less. He can be redirected, he can answer yes/no questions sometimes. He sometimes just falls asleep when you are asking something. He is moving around his bed turning from side to side slightly. He keeps freaking out when he notices the oxygen sensor on his toe glowing red like ET’s finger. I am better to recognize his issue and once I tell him what it is, he settles. We are both learning this odd form of communication. Today when I untied his good hand, he reached up and gently pulled my mask off. He then was touching my face.  He then fell asleep. The mask thing has got to be weird.  The most common thing he mouths, “I want to go home.” He keeps coughing up some yucky stuff but the general consensus is that it is old funk and he wasn’t able to get that up when he was paralyzed. I put one of Ethan’s business car

  Ethan slept a bit this morning. I was able to go back asleep for a little bit. I hurt my neck in the shower because I am old. I think it is from moving Ethan. He’s kind of a load to roll around the bed. He had his echo first thing this morning which is cool because I thought it was going to be on Monday. I am curious of how his right side of his heart is doing. They didn’t have results for rounds and rounds were late today. This floor has been hopping all morning. Ethan was running a little low with his blood pressures today and his oxygen was upper 80’s low 90’s all morning. Last night he dropped to mid 70’s a few times. The percentage of red blood cells in his blood have also been dropping, so he earned another blood transfusion today. I am hoping this makes him feel better. It should help with both. They took him off the cooling blanket to see where his temperature is at. Fever? No fever? We will see.  His lung secretions are nasty today. Like brown apple sauce. They were clear tw

Delirium gets worse at night. Ethan had a different overnight nurse last night. We have had him before. He is a delight.  I was so tired yesterday I forgot to put in my ear plugs. I woke up around midnight because I heard the nurse say “I need you to calm down or you are going to hurt yourself”. What the...I jumped out of bed. “What’s going on?” He explained that Ethan’s delirium caused his blood pressure to go down and his lung pressure to start to rise. This is the perfect storm for a pulmonary hypertension crisis just like last time when he arrested. Ethan has been very good at listening to my voice. I held his hand and his nurse and I talked him through it. Last night was a rough night in the floor. There was a baby two doors down that was not doing well. There were no extra people to help my nurse. I told him he and I were going to be a team and he just needed to tell me what to do.  We made a good team, again he is delightful, and this kid (the nurse, he is young and apparently I

 Ethan had his EKG. It was decided that his delirium medication can increase safely. Ethan has been a bit less delirious and more responsive today. He is able to answer some yes/no questions but he is still pointing at the ceiling with conviction that he sees something. He also has gotten to a point that he will see these things but be able to settle himself and not start punching the bed or try to launch himself off the bed. His nurse asked me to put on Ethan’s YouTube channel and I think I caught him a few times watching it.  His nurse weaned back a little on the sedative likely responsible for causing most of the delirium. I have seen more of Ethan’s eye balls today than I have in the past 2 weeks. Ethan got one of his double lumen arterial lines removed. This one was in his groin area. Stuff is coming out again! The thing that is bothering Ethan the most pain wise, is the skin tear on his back. Ouch. It looks so sore I can’t even imagine how sore it must be. Wound management will c

  The bear is soft, like Phineas. Ethan had some more moments of delirium but these moments do seem to be worse in the evening. Psych came and evaluated him. They decided Ethan should have another ECG to assess his heart rhythm before adjusting any of his psych medications.  The one medicine he seems to respond to can cause arrhythmias so they have to be careful when going up on the dose. The benefits should outweigh the risks. Ethan’s team did seem to think if they can correct his delirium, he can then start being weaned off his sedation.  This will lead us to the ultimate goal of extubation. What? Yes, they said that word today.  I am a bit guarded because he was so close the last time and he fell about two weeks behind. They are thinking extubation within the next 7 days or so if his progress continues. Wow! But still trying not to get too excited. Ethan did want to be sitting up today with the office on. So he was coherent enough to to communicate that. He has been much settled sin

  Sedation was finally achieved. Yeah! Ethan was settled. Je had a relatively uneventful night.  Just what I wanted. That was my gift.  Hopefully the psych team can come by later and give direction on what to do medication wise to help with the delirium. I didn’t sleep as well last night as I did the night before. Probably my own doing. I was keeping an ear out for what was going on in the room. My wonderful nurse kept things very quiet.  I noticed tape around his thumb and pointer and middle finger.  His thumb has gone to jail. She had to tape Ethan’s thumb to his hand because he was grabbing stuff and just pulling on it. She said that he can still break through all the tape but it slows him down. Ethan’s thumb will be able to be paroled when his delirium is under control. X-ray came. I thought he looked even more murky today than he did yesterday. Of course I am not a radiologist, but that was my assessment. They are getting out some funky stuff.  Maybe that is normal once they start

 I have been holding my breath all afternoon and into the evening. Not only because I am a little cautious but also because there is no question, Ethan is processing his oral feeds just fine.   Ethan did start to stir and we saw movement and eyeballs. He then started doing his delirium behaviors.  Picking at his O2 sensor.  Not making eye contact. Picking at his hospital gown. I told the nurse it was delirium and not his regular thoughtful responses. A call was put into the Psych team because I don’t want a repeater of last time. He was then given his medication for anxiety and he settled down. He progressed into moving arms and legs and head. We are back into full cyclic delirium. Not quite trying to get off the bed but close. He is so weak now. When he tries to move his arms and legs they shake. I am able to calm him down and refocus on breathing and relaxing. It is short lived.  He then have to have a bath due to his processing of his food. That took about an hour. Their were four o

 So, they have decided to lift Ethan’s paralytic today. I am a little excited but mostly terrified. This is what they did the last time he arrested. It has been 8 days since I watched them do chest compressions. I am hoping there is not a repeat. So nervous does not even begin to explain it. This could make or break this holiday for us. I think I am not the only one that is nervous. Everyone is approaching it optimistically as well as cautiously. His nurse has done all the oral care, flipping and care that usually agitates Ethan. He is going to get his methadone and hopefully chill and let the paralytic wean off.  I had a nice Christmas morning with Paul and Avery the rough the portal. Avery took over the tradition of Christmas Quiche and did a pretty damn good job at it. Go Avery! So we are just going to “wait and see” what happens. Wish us luck. 😬

I slept in today until almost 7.  This is because one of my favorite nurses was working. She is like a little mouse doing ballet quietly around the room. I told her that she was so wonderful and I appreciated the Christmas gift of rest she gave me. She had picked up some gifts for Ethan. She has had him multiple times.  She got him a stuffed dog because she knows he has dogs and some fast and furious hot wheels cars, well, because he’s a car guy. So sweet! I know he will love them. Last night Ethan and I watched Elf and National Lampoon’s Christmas. Both classics. Both enjoyable! This morning, Ethan has on TV a picture of a crackling fire and some Christmas tunes playing. When Ethan’s nurse comes in to give a medication or do something, he starts humming along with the Christmas tunes. I think that’s cute. He has no idea he is doing it. Ethan is slightly moving even with the paralytic. I put the stuffed dog under his hand so he can feel how soft it is. It is so soft. We think that when

Where in the world is Carmen Sandiego? Probably with Ethan’s left kidney. No one really knows where Ethan’s left kidney is. At rounds this morning I was asked if Ethan had any imaging done in the past to confirm he has a left kidney.  I, with a straight face, told them that he sometimes tucks it under his liver to preserve his internal temperature which was why he has a fever. Watching them process that information was priceless and was a gift I gave myself on this fine Christmas Eve. I watched their faces transform into thinking faces. Furloughed brows, awkward glances toward one another. Then I busted up laughing. “I am not being serious” I said. You could see the deep breaths of relief escape them.  As they started to chuckle. I think they are starting to get used to me. It’s like I get a new audience every week. They rotate through. Each week is a blank canvas just waiting for a splash of my dazzling personality to hit it. A color like no other. The renal specialist came in and sai

 I went to bed early last night. I was so tired. I slept well but when I woke up, my sinus’s were all pissed off. I was first to the shower. Total bonus! I went to go get coffee this morning and the machine is “out of order”. Crap! I was foggy headed and headed back to the room. I sat on the bed and stared at the floor. I am not sure how long I did this.  This is how efficient my brain is without coffee.  I went down to get coffee at the cafe. It was closed. So I put in an order from Starbucks. It’s about a 7 minute walk. I took it as an opportunity to exercise my heart and walked as fast as I could to get my heart pumping. I also got a coffee for the nurse again. I know his flavor now. It makes me feel good to make someone else’s day. He was so happy. Ethan’s nurse wore a cool shirt today in the spirit of the holiday. It made me think of certain sorority sisters.  It is a Big Foot with a Santa face and says the word “Believe” under it. It made me smile. Ethan had a decent night. The n

All the car pictures Ethan’s car guy, PT buddy gave him. Today was interesting.  Ethan had the renal team come for a visit. His renal (kidney) values have been creeping up over the past 5 days. They are calling it an acute kidney injury. The doctors have been thoughtful about it and tried to lessen the work load of the kidneys by making small adjustments.  The kidney team came in and let me know that Ethan would now be getting twice a day kidney panels as well as a kidney ultrasound. They briefly touched on dialysis and that it could be something we need to do. My brain is telling me not to get upset yet though. The ultrasound lady came in. She had a very thick accent. Pair that with the double masks and I couldn’t understand a word of what she said.  The nurse way trying his best to help but even he was having issues. She was having issues finding his left kidney. At one point she asked me if Ethan had a left kidney or if it had been removed.  Of course this took her asking me several

It’s 4:30 am. I woke up to the repetitive dinging of the machines. Ding.....ding.....ding.....over and over again. I laid with my eyes closed but it just wouldn’t stop.  I had my ear plugs in and the pillow over my head. Ding....ding.....ding.....I popped out of bed. Ethan’s blood pressure was low and that is why it was going off. It wasn’t too low though. But enough to trigger the machine.  Ethan’s nurses were in the room two doors down which was some sort of emergency. I saw the crash cart there that had been parked outside of our room last week. Some poor parent is suffering in their own quiet hell. This monitor has an inside voice and outside voice.  It has a quiet ding, which is a “hey something is a little off” warning. Then it has a “THE BUILDING IS ON FIRE AND WE ARE ALL GOING TO DIE” ding.  The second one is obviously my least favorite. I think scientists have tuned it so it interferes with the human nervous system and makes you twitch a little when it goes off. It’s part of t

 After rounds today I felt a bit bummed. The plan is to continue what we are doing by inching up on the lung pressure medications and then adjusting everything else as Ethan needs it to remain stable. His blood pressure goes up when he is turned or his teeth are brushed or his tube is auctioned. I have had this nagging feeling.  I candidly asked the doctor “Is he heading in the right direction?” She paused a moment and then carefully chose her words. I have seen this maneuver done by doctors when they are trying to discuss something difficult. I see Ethan every day. I know he is a “sick” kid. I know he is not ideally where he should be in his recovery process. We were hoping to be out of the hospital at this point or at least being able to talk to one another. No one could have anticipated such a prolonged and difficult recovery. The doctor replied with “He hasn’t gotten any worse since yesterday. (Insert long awkward pause). He also hasn’t improved. He is on a plateau.” Her voice was

I apologize for the nasty photos. I know I complain about the bathrooms a lot. But there is a reason why. This morning, I found the bathrooms in the following condition. Let me set the stage for you. You open the door and a heavy urine/toilet water smell assaults your nose.  Sounds pleasant right? I did request for “housekeeping” as soon as I found it. I also took the elevator down a few floors and went to a different bathroom, in my pj’s with bed head. These are adults using this bathroom. Pee on the seat? Pee down the front of the toilet?  Dirty floors? Paper towel everywhere. Ugh! I may get a pair of gloves and some bleach later today and dose it. I am half tempted to close the door and put a sign on it that says “out of use”. Then it can be my own private clean bathroom.  I have to use the bathroom anytime I change my clothes too. I put paper towels on the floor so I don’t stand directly on the filthy floor in my socks. I will be lucky if I make it out of here without a parasite. T

 There have been small adjustments to Ethan’s medications. Very small. It is like juggling with glass shards.  They are being overly cautious. Ethan is starting up on real feeds through his nasal gastric tube. It will help with how much his iv fluid intake is. Too much IV fluid intake is not ideal for the blood pressure. Ethan has had a fever all day. It has sat around 100.6 for the last several hours.  All the cultures have been sent to make sure there is no infection. His white blood cell count is a little elevated but the same as yesterday so that’s good. I was told that I am doing Ethan’s physical therapy more aggressively than the hospital PT team. I feel like it is a way I can help.  So I am on it. He gets his boots and brace on for 3 hours, then off for 3 hours. Before I put them on I do stretching and movement on his limbs. I do the same when I take them off. Ethan’s PT car buddy came in and worked with him a bit today and said Ethan feels limber which will help him when he goe

 I was sound asleep and I head the nurse say (through my ear plugs and through the pillow over my head) “Ethan, you’re awake!”.  What the..... I sat straight up in my bed and said in a panic “What? He’s awake?”. Adrenaline pumped through my veins as I had a million anxieties flash before my eyes.  He’s not tethered. Why did this happen so fast?  It was supposed to be slow. What did I miss? Why the change in plan so rapidly? The nurse giggled. “Not really, but his blood pressure was low and we suctioned his tube and then it went up. We got his attention.” I then explained my side of that conversation and what I heard and it jolted me out of a sleep. She apologized profusely. I wasn’t mad, I was thankful Ethan wasn’t trying to pull his tube out. We shared a laugh over it. I think that proves I am not sleeping as soundly as I thought. Always listening. Since I was jolted awake and there was no chance I was going back to sleep,  might as well be first to the shower.  Got my shower, got my

Ethan has had a relatively quiet day. A quiet day of healing.  His scar is looking better and better. His chest tube holes are granulating in nicely. His scar from the ICD removal healed well. His artery repair scar is healing nicely.  This kid is all slashed up. He has been stable with his blood pressure but still running a high pulmonary pressure. This I am told will be a months long process to reduce it. A new medication is being started to help with that, very, very slowly. In fact so slowly it is going to take 5 days or so to inch up to the lowest dose recommended for his size. This way he can acclimate to it and it won’t shock his sensitive system. This will set him up to smell like a rose. We need to avoid the shit piles from here on out. He is developing a little bit of a bed sore, so he has really been turned a lot today. This helps offset the pressure. Because he has gotten so skinny, his bones are more pronounced so they have to stay covered with these special adhesive pads.

  Just look at this mess of IV lines. Ethan had an ultrasound done last night to look at the fluid around his lungs and heart that has collected. Because they saw fluid, he got an X-ray holiday today. They are going to wait for tomorrow to see if the diuretics work. Hoping for a change. His diuretics are working VERY well as far as an output standpoint. So hopefully by tomorrow his X-ray will be much improved. It also gives him another day on antibiotics to help lessen the opacities in his lungs.  They want nice, healthy lungs before they really start to change things. They are moving very slow to make sure it is don’t in the most careful way for Ethan.  Good news, they pulled out one of Ethan’s emergency triple lumen femoral central venous access line. It is essentially a 7 French or 13 g needle. It’s a decent size and was about 7 or 8 inches long. Things coming out is good. Last night Ethan’s blood pressure had increased. It’s like a fine tight rope walk. What am I going to do with t

Ethan has had a quiet day. A nice day of rest.  The ophthalmologist came by and said his eyes were slightly improved. We keep medicating, lubing and taping them while he is sedated and paralyzed. They still look red but not quite as inflamed and angry as before. Neuro came by and still thinks there was some sort of event that occurred on the other side of Ethan’s brain that affected his right side. All of his reflexes check out good except his blink reflex. He has no blink in the right eye, but again, he is sedated and paralyzed. Nothing showed up yesterday on the CT scan but they want to be thorough and send him for an MRI when he is a little less critical.  Either way, if he has damage or not, we will deal with it and support him they best way we can. There were no evident occurrences on the CT scan so I consider that a win. Ethan’s X-ray also showed more opacities in his lungs so they are going to add an additional antibiotic to make sure nothing is growing in there.  Plus they turn

 Last night was smooth. Ethan was stable. Occasionally his blood pressure dropped if he was turned one way or another. I did his stretches this morning and applied the stroke boots and stroke wrist positioner. He has had his daily care routine of having his teeth brushed, face washed etc. At one point, a horrifically high pitched, steady, painfully loud noise was sounding.  Where the hell is that coming from? He was breathing, so it wasn’t him flat-lining, which is kind of what it sounded like. I looked at all the pumps. The nurse had stepped out of the room. I glanced up at Ethan’s monitor to see if he looked stable, and he did, so I wasn’t overly concerned. I found it was the EEG machine (brain machine). All of the lines were going haywire. Ut oh! I covered Ethan's ears with pillows and stepped out and found the nurse and told her. Then I waited out of the room.  It was so loud I couldn’t go back in.  The nurse came and looked at it and called the EEG team. We were going on about