Ethan’s Journey

Today has been a busy day. Ethan woke up and was immediately home sick. He misses everyone and he was bummed. There really isn’t much I can say to make that better so I feel helpless. He ate all of his breakfast. I spent about an hour and a half on the phone with insurance today. I have a critical case manager to help me. Thank god for her. There was no way I could have navigated the issues without her.  Dialysis noticed that he has gained 11 pounds since a week ago. They asked if he was eating ok. I know most of that is likely fluid as they didn’t take as much off as much fluid on Monday as they normally do. But I can’t help think that with his hearty appetite and PT/OT, he has gained a bit of muscle and weight. Everyday he is looking stronger and stronger. I looked back at his progress today. I have a picture from January 17 th (1month after his 2 nd cardiac arrest) and today, 2 1/2 months later. The difference is amazing. Ethan has been struggling with anemia. This isn’t new and has

 I was the first one to the shower this morning. These bathrooms are spotless. The toilets are clean, there is no foul odor. It is amazing. I convinced Ethan to allow me to make plans for him to have a tutor. It was more like begging him to release me from being in charge of that. He wanted me to help him and I have proven to be incapable. I excel at other things economics and English just aren’t my forte. I am so glad he agreed to it. He wants to graduate. It’s hard to schedule in time for schooling with PT, OT, dialysis and recreational time while still on sedatives and learning how to do simple things like getting yourself dressed and practicing walking. Everything takes longer. Eating, walking, dressing, bathing....everything. Ethan went to his therapies and did well. I was able to scoot out and accidentally buy 4 bags of jelly beans. Damn it. Why are they so good? My family might say I am a jelly bean addict in the spring, but don’t be fooled, they eat them too. Probably just as m

My phone rings......”hello” I say. How come I always answer the phone like I am asking a question? Upward inflection it’s so weird. However, if I answered it a different way, it may sound aggressive. “Hi this is the kidney donor team calling you about your donor compatibility for Ethan. I immediately felt like I was going over the hill on a rollercoaster. That feeling where your stomach goes into your throat. He kept talking.  I tried to patiently listen but really just wanted to know, Yes or no? Yes or no? Why isn’t he saying if I am a match or not. “How are you today?” He asked. Does he really give a crap? I don’t really care how he is doing. I just want the yes or the no.  “We got the results back on your test and you.....” I felt like I was on Maury Povich finding out the paternity test on one of the 26 guys that could be the father of my baby. “You are a match to Ethan. If the time comes he needs a kidney, further testing will be required but you are a match.”  What a relief! We c

Day two. Ethan is sore from all the walking yesterday. He still managed to dress himself and put his shoes on. He also brushed his own teeth and used the bathroom by himself. This is HUGE progress for both of us. He totally LOVES the food and has eaten everything on his plate for each meal.  His kidney is still trying. He puts out a little bit more urine each day but still is hardly working. Our first dialysis appointment is tomorrow. Our insurance doesn’t cover transportation so I am nervous. I am hoping I can make it work without a hitch. I am putting all my faith in Uber. Ethan has a therapy session today. He is pretty excited about it. Yesterday we had a great conversation about how if you are frustrated, angry or depressed, that your head space becomes cloudy and you lose motivation. Now that he is in a better emotional place, he has been able to focus on a goal and make such huge progress without any therapies but mom’s gentle nudging. Ethan went to the gym today for his physical

 Our ride finally arrived. The one nurse that was coordinating everything for us, man she worked her ass off. She waited for us to leave before she went home. She stayed late for us and I thought that was so above and beyond what was expected. As Ethan was leaving, all of the nurses and doctors gathered around Ethan. They had their bubble maker guns out and started shooting bubbles all over him. How could you not smile? Everyone was clapping and cheering him on. Ethan got to ring the “healing gong”. This is what I call it. When you leave, you get to ring it. Ethan hit it loudly. I looked at him and was thrilled. We are walking out together. He decided he wanted to walk out of the hospital and not ride on the ambulance stretcher that was provided. That was him flipping off his hell.  We made our way to the ambulance loading and unloading dock with our tiny cart and the stretcher loaded with our things. They put the stretcher in the ambulance and Ethan stepped up the big steps and climbe

This morning bright and early, the hoopla started. Before 7 am the dialysis machine was being set up in our room. I was up before that. I heard the door open and saw a friend with coffee for me. Wow! My coffee machine was packed away somewhere. This was so needed.  Last night we had another friend bring Ethan some candy because she felt so bad for Ethan and our situation. I want to be more like them. I want to make someone’s day a little brighter and easier. Random acts of kindness are contagious.  Ethan had a warranted moment of frustration this morning. He was just upset and frustrated with the situation. He wants to go home and see everyone he loves. This has delayed him from that goal. He was frustrated by that. I am too. We talked about our bright spots. Paul helped us realize that our controlled reactions yesterday likely affected how someone else’s day went. Our social worker could have received a verbal beating for something that wasn’t her fault. Maybe, because of our reaction

18 weeks. That is how long it has been. Longest, most eventful 4 1/2 months of my life. 15 weeks 5 days in ICU. Well that was a ride I would never like to go on again. We are moving forward. Sometimes I feel like we are playing dodgeball with life. We just have to try and not get hit. Ethan and I were excited but cautious today.  We laughed about how anytime there is traveling involved we turn into the traveling shit show. Things just seem to go wrong or happen that aren’t as smooth as they could be. Many people came to say goodbye today. It was so sweet! We vow to visit when we come back to clinic.  I packed everything up for our 11:45 am departure. 10 minutes prior to departure time, we get a call saying our ride has been delayed until 2:00 pm. Ugh!  Ethan’s biggest concern is if there is a TV in the room.  If we will be close to chipotle (we will) or if they have ice water like the ice water at the hospital. Reasonable concerns. Around 1:45 I get a call from our social worker to com

I had to laugh this morning. Ophthalmology came by to examine Ethan. There was a sign on the door that said “DO NOT DISTURB ETHAN IS IN CLASS.” She opened the door, came in and said “I saw your sign. Is now a good time to do an ophthalmology exam on Ethan?” She stated that she saw the sign. I politely recited the second part of the sign she already saw. “Ethan is in class and we can’t disrupt him.”  “Oh......ok....I guess I will come back later.”  I told her “that seems like a good plan.” I just don’t understand????? These are situations that drive me a little nuts. I have to do my box breathing afterwards. I took the time to communicate our needs. They were just ignored. Ethan did have some visitors that came to say good bye. They didn’t seem to have trouble with the sign. Ethan had tears in his eyes. Loose plans were made in the future for when we come back into town to go to appointments. It makes it less of goodbye and more of a see you soon situation. Ethan had his PT after class

Ethan woke up rested and ready to kick some ass. Ass is what he sure did kick today. He went to class. He ate breakfast like a champ. PT/OT came for their last time together today. They had the best session ever with Ethan.  Watching Ethan interact with them was so fun. They brought out this game that was mesh and folded up. When it was unfolded it became a game where Ethan was to toss the ball into to this enclosure and try to get the ball into one of the holes. It was sort of like skee ball in that some holes were larger then others. By coincidence it just happened to be a planet theme. I felt like I was having a maturity test and failed. Not just a slight fail, but a tumbling over a cliff and hitting every rock on the way down, fail. “Ethan....” I said smiling “ let me see if I can throw the ball into Uranus”. Ethan just shook his head as I was just laughing at my own jokes. “Uranus is so big, how did you miss it?” They just kept bursting out of my mouth and did I ever snicker. We w

Calorie counts, counting ounces of fluid, keeping track of all his beads he has earned. This is with trying to juggle all of his different specialists, school, and other things. We are supposed to leave on Thursday. I told them if we don’t leave on Thursday I might have a mental breakdown. Ethan had dialysis first thing this morning. Dialysis is hard first thing in the morning. As it is removing the toxins from the body it also sucks the energy away.  We had rounds. They talked about leaving the heparin drip on for another day. Ugh! I hated that. I advocated to have it shut off today. I used the info they gave me the other day as criteria for why they should remove the iv. They had met the criteria they had set forth a few days ago so I didn’t understand and questioned it.  After reviewing their notes, during dialysis they shut off his heparin drip. He’s free. His leash is off. Woo hoo! I did mention to him yesterday that he was like walking one of the dogs. Except he was far more beha

 Today’s goal, increase the amount of calories Ethan consumes. Ethan punched Withdrawl right in the face and it was a knock out. All of his symptoms have subsided. We had a relaxing day. Ethan did 3 laps around the unit. It’s weird because he is still tethered to an iv pole. Hopefully that will go away tomorrow. I felt like I was walking a dog.  He was able to work on some homework and submit an assignment. When wretching and other unfavorable symptoms are kicking your ass it makes it impossible to get anything done. Ethan ate well for lunch and dinner. He also smacked well and trying to work as hard as he can to gain some weight. We had minimal interruptions and it was nice. We enjoyed the sunshine hugging us through the window.  Ethan decided he wanted to eat Wendy’s. He ordered a baconator, fries and a frosty. Wendy’s was a disaster. My order wasn’t ready and when a huge amount of time passed, I asked the cashier about it. “I called that order a while ago you never picked it up.”  I

I couldn’t sleep last night. I looked over at Ethan and he was sleeping and not wretching for a minute. He looked peaceful. I wandered out of my room and took the back elevators that parents aren’t supposed to take, up to 9Tower. It was like I was Norm walking into Cheers.  I explained to them we were leaving soon. I explained how crappy Ethan’s day was. They were all equally saddened to hear about his nausea and being down. It was nice to see familiar faces. I got back to my room around 11:30 pm and the floor was quiet. I tiptoed into the room and went to sleep. This morning I woke up around 6:00 am.  I laid in bed and thought of things to do to try and cheer up Ethan. He woke up and wanted to get out of bed. He sat on the couch for a bit. He sat looking at the floor, sullen. We got a knock at the door. Ethan looked up and in walks 5 familiar faces from 9 Tower night crew. They brought Ethan and I breakfast and coffee (for me). How freakin nice. They all stood around as Ethan’s eyes l

Ethan had a rough start to his day this morning. He was homesick and tired of being here. He was also nauseous and it was important to him go to class because he had missed the past two days. He was able to attend class with his bucket close by. Luckily he didn’t need it. After class, he was feeling pretty low. This week he has been hard. The fistula took longer than expected, he missed a dose of methadone. That has caused him to withdraw and wretch, have tremors amongst other unfavorable side effects.  He is back tethered to a pole. He can’t use his left arm due to the surgery. He had his fluids restricted even more. He hasn’t been getting good sleep because they are doing blood draws on him every 4 hours to regulate his anticoagulant.  He feels like crap and misses home. Other than those few minor things....his day was fine. (Sarcasm) His OT ground angel came to the rescue and cheered him up at just the perfect time. She saw him struggling to maintain his composure. She sprinkled her

The morning was rough.  We found out more why the 3 hour procedure took 6 hours. Ethan can’t straighten out his left arm yet. It is still unable to become straight since the stroke.  Well by the sounds of it, the surgeon had to do twister to do such a delicate surgery. Right hand yellow, left hand s sole blade. The surgeon also said he was being very careful since some of the vessels had scarring from his arterial line and iv’s he had. This is the same surgeon that would be doing Ethan’s kidney transplant if his kidney doesn’t start behaving.  However, Ethan did make 37.5 ml of urine today. Because Ethan’s procedure took WAY longer than it was supposed to yesterday, Ethan missed one of his methadone doses. That put his body into withdrawl and it caught up with him today. Ethan slept off and on until almost noon. He just needed to catch up. When he was up, his face was in a bucket until the anti nausea kicked in. His pain was manageable with Tylenol. I still maintain this kid is tough a

No food after midnight is the worst. Especially when you have left over ribs to eat. Ethan is not worried about his surgery today, he is focused on eating his left overs. This is a sign to me that each day he is getting better and better. Dialysis was here setting up before 7:00 am. It’s so weird to wake up with a strange man in your room. The morning breath in the mask is always so fun. Good morning I say as I almost pass out from my own filth. Ugh!  Ethan started dialysis around 8. During rounds at 9:30, his nurse got a text that transport was coming for him at 10:00. I interrupted rounds with my knee jerk reaction. It just burst right out of me.  I said to the nurse “text them back and make sure they aren’t going to park him somewhere for a while before his surgery. Tell them he is getting dialysis and needs as much of his blood cleaned as possible. Also tell them they can’t come and get him until I sign the consent form.” Then I realized how bossy I sounded. I looked at everyone an

5:30 am. Ethan and I are both sleeping.  I am woken up by a knock at the door. As I am deciding if I just heard the knock or not, I hear a booming lady’s voice “good morning, I am here to draw labs.” Why is she so happy this time of the morning? She comes in and flips on the brightest light in the room while I am still trying to process what is happening. Ugh! It was so bright. I was not ready and was blinded (me being dramatic). Who knew light could be used as a torture device? Poor Ethan. He went through the same experience AND got poked.... in the hand. The hand is the worst. Ethan attended his class. We already fell behind because he fell asleep after dialysis and we didn’t complete a homework assignment. It is clear that I am not much help with the homework. Whenever I give him a confident answer it is typically wrong and gives our financial advisor another reason for job security. I keep saying “this is why you hire people to help you.” Ethan has been a little down the last few d

 We had a typical Monday. I woke Ethan up to get him ready for school. He had his labs, EKG and then  attended class. After class he had OT. After that was cardiology, then renal, then the surgical team and psych. He of course urinated 30 ml. This kidney is a taunting jerk. I have extinguished all communication with the kidney as I feel it is dramatic and is attention seeking. Ethan had dialysis in the afternoon while I entered the exciting world of SSI. That took up almost 2 hours and then I spent the rest of the time trying to get an appointment for a blood draw to see if I would be a good donor match if Ethan’s kidney doesn’t start working.  I spoke to a man that was really helpful. The kidney transplant clinic is two doors down so it won’t be bad to walk to. I finally got an appointment tomorrow afternoon. Then the waiting starts.  The man explained that likely the wrong bloodwork was drawn last week (I had them send it off last week.) and that he needed a re-draw. I always try to

We had a quiet day with minimal interruptions. It was nice.  Ethan slept until 11:30 am.  He relaxed and really enjoyed his quiet time playing the play station.  I have decided to just go ahead and schedule the fistula surgery. Ethan made 5 ml the entire day. Ethan’s kidney and I are in a fight. We are not on speaking terms until it decides to do what it is supposed to do.  I also found out that once we go to outpatient dialysis that we will have 90 days to get the fistula surgery done. This is because the vas cath (which is what they currently use for dialysis) is a risk for infection. It takes 12-16 weeks to heal. The plan is to move forward to rehab likely this week. It will be inpatient rehab so he only leaves for dialysis as well as his doctor appointments. We will be traveling from rehab back to the hospital for all of his follow up care as this team will continue to follow him for several years. The first month out of the hospital we will be returning weekly. Our visits will be

It’s show time kidney! This morning the renal team came in to tell us that Ethan’s blood work after dialysis yesterday was abnormal but to the point where instead of dialysis, we could try a diuretic challenge.  Ethan was blasted with diuretics to see how he did.  Shortly afterward, he made 10 ml of urine. Then there was nothing. The kidney went back to sleep. Stupid kidney.  He also had his kidney ultrasound to take measurements and look at blood flow in the solitary kidney. We get results tomorrow. Ethan’s fluid restriction was reduced to only 1.2 liters a day for today and tomorrow. Some of that is overnight feeds which reduces him to a mere 19 oz a day. He was pissed. Ethan was able to walk up mostly unassisted to 9 Tower and go visit his friends. Everyone was excited to see him and the fact he was walking without a walker. I also took Ethan for a wheel chair ride outside in the courtyard. NO ONE was outside even though it was sunny and about 50 degrees. Today’s urine output was 12

Last night Ethan went to the bathroom and it measured to be 30 ml of urine. Holy crap! Wow!  We high fived but then talked about how his kidney is likely bunk and we would still have to do the fistula surgery. We would have to wait until after the teams discussed his case and everyone agreed it was ok to move forward and do. But Monday would be the day. I woke Ethan up this morning so he could attend his class remotely. We talked last night and I asked him if he thought it was too soon. He thought he could handle it. So I woke him up. His sedation medication really kicks his butt in the morning. This is weird because he is a morning person. It took an hour to get him ready for class. He had to get dressed, brush his teeth, wash his face, get his blood drawn, get up and move to the computer, take 1000 pills (slightly exaggerating) and make it to class. Who knew life used to be so simple. I hung a sign on the door that read “Do Not Disturb, Ethan is in Class”. What do you know....someone