Ethan’s Journey

Today was a good day. Ethan ate breakfast. Did his morning routine. We were watching a show on hunting big foot. We were discussing the lack of use of infrared camera’s or trail cam’s.  We were discussing whether the foot prints they were finding were legit or not. It seems like they don’t want valid proof like a video, just to suspect they are in the area because sticks are broken. It was quite entertaining. We haven’t had the tv on much so it was nice to watch something together. Ethan was able to walk assisted to the couch. I made him a “seat” that wouldn’t allow him to slip. Yesterday he was having issues slipping. I used some pillows and tape. Boom!  My seat was pretty good. He still slipped but not as frequently. He did some OT by coloring. He then proceeded to nap the whole afternoon. He didn’t even attempt to get back into bed until after 8 pm. Ethan had an X-ray done. His lungs looked good and not “wet”.  Ethan continues to hate his strict fluid restriction and I don’t blame h

Fran arrived at 7:45 am. It was a different machine and a slight bit more compact than the Fran yesterdaybut made about the same amount of noise. Ethan woke up briefly but took a nap through all 3 hours of dialysis.  Ethan’s thyroid results came back that he has a low thyroid again. The endocrine team does not want to start hypothyroid medication just quite yet. This was discussed last week as seriously ill patients can have this issue and the thyroid is just going into a protective mode. So we will continue to monitor his thyroid level as we go. Ethan will also have an ACTH stim test next week. This will measure Ethan’s ability to produce cortisol. Cortisol is the body’s stress hormone. It triggers your brain to let you know when to have the “flight or fight” response in a stressful situation. It controls your mood, motivation and fear. It’s pretty important as it also plays a role in blood pressure regulation, controls your sleep/wake cycle , how your body utilizes carbohydrates and

 Ethan had a good night. No wretching. He slept well despite the two pokes from blood draws that were done by mistake. He has a port that they draw blood from so that kind of sucks but not the end of the world.  Ethan was feeling “full” this morning and ate a mediocre breakfast. They brought Janice’s cousin, whom I dubbed Fran (after Fran Drescher). Fran has a caboose. Her stature is a bit wider than Janice but she can make just as much, if not more noise. The noise is different. It’s not nearly as offensive. It’s a cyclic hum type noise. So maybe Fran and I can be friends? We will see how she behaves. My RT buddy brought a Naked smoothie for Ethan and a coffee for me plus some snacks. My favorite thing he brought was a friendly smile. I can’t say enough good things about our tower 9 friends. Ethan, right on cue, started wretching just as rounds started. He has now earned a GI consult. Apparently we want to make sure he has a specialist for every area and are succeeding.  PT came today

Ethan had two very brief episode with nausea. This is great news!  It does seem to coincide with when medications are due or his feeds. When I woke up this morning, our room was different. I looked around and realized Janice was no where to be found which meant she quit overnight again not fulfilling her 3 day obligation of dialysis. Today is a rest day from dialysis. We will see what Ethan can do. Will he blow up with fluid? Will he make any urine? As I spoke with renal, I coordinated the HD to start after Ethan’s PT session tomorrow. I didn’t want him missing out on the motion. Today PT/OT had Ethan up and walking. He looks so tall when he stands. I swear he grew. He walked around the unit, slowly and carefully, trying to work on his balance and where his feet were. He is unable to walk unassisted. But he tries so hard.  Now that he is off dialysis we have gone from 3 glorious thick blankets, to “I am hotter than the surface of the sun and need two fans”. He has ice packs all over hi

Ethan woke up in the middle of the night needing to use the bed pan. This turned into being on the bed pan and becoming nauseous. Then came the wretching and vomiting. For almost 2 hours. “I am shocked” said NO ONE.  Imagine laying in your bed as a teenage boy, on a bed pan that is soiled, but it can’t be changed because any movement will initiate a wretching fit, that will drive the plastic edges of the bed pan into your fragile skin. Sounds fun right? After an hour and a half of trial and error, and 4 different medications later, the nausea and vomiting stopped and we were able to take care of “business”. I do have to get out of the habit of cleaning Ethan’s rear and upon completion, stating “there, clean enough to eat off of.” I say it because I humor myself with saying it, but it has fueled some interesting looks from many nurses.  Ethan was frustrated and upset as anyone in his spot would be. “I am doing all the right things.” He said as he was racking his brain as to what else we

 Ethan woke up nauseous again. He was frustrated right off the bat. Enough is enough. I could feel my anxiety creeping up, causing tension. I get like I needed to meet with everyone and see what we can do. I met with the dietician, nurse practitioner, psych team, speech and swallow, pharmaceutical folks, and we were collaborating a way to keep Ethan comfortable. Finally, the nausea subsided. How long will it last?  Good question. I told them I was frustrated because I was watching Ethan get defeated and even more deconditioned  because he simply doesn’t feel well enough to do anything. He was doing PT with a bucket yesterday. He’s trying so hard. I would not have done PT with a bucket. I would have stayed in bed and whined about it. He started to feel a little better. His color came back. He was then ready for PT/OT. He was supposed to try walking today but stupid Janice was supposed to be changed today. Because she goes down so often it goofed up our PT schedule for walking. Ugh! Etha

3 am. I woke up to hearing Ethan call my name. His voice is faint and weak. I had ear plugs in and was in a deep sleep. His stomach was off. “Get the bucket”. I had the nurse immediately go get the second “rescue” nausea medication. He wretched and spit for a bit. Then settled after getting medication. Back to sleep. Ear plugs went in. Back to sleep for me, until I hear my name being called. I jumped up at an alarming rate and scared the anesthesiologist. It was 7 am and they wanted to take Ethan as the first patient of the day in the cath lab. The anesthesiologist profusely apologized. I told him I just startle easily and not to worry.  We went over all the risks, blah blah blah, sign your life away.  Ethan had worry colored all over his face. He was worried about getting sick. He was worried it would hurt. He was worried. I couldn’t tell him it would be ok because with Ethan’s history....one never knows. One of Ethan’s tower 9 nurses stopped by this morning.  She had found a little s

Another frustrating day of nausea and vomiting. At least the south end is moving and producing again. I spent the morning trying to look up different medications, their side effects and trying to figure out what sparked this on Friday to start. What are we missing? It’s like a dog chasing it’s tail.  His treatments are not being effective. He has worked to hard to be feeling like this. I met with nutrition to advocate that Ethan needs more gastric feeds if he is taking in less calories by mouth with his reduced appetite. I didn’t want him to fall behind nutritionally. It is bittersweet because the additional fluid intake will set him back for HD dialysis but he needs help in this way now. He is also down to 93#. The nutritionist came up with a plan and I checked off that box. Ethan is sleeping almost all the time unless he wakes up to go to the bathroom or wretch/vomit. I asked for another anti nausea medication for him based on a recommendation of a friend.  At rounds, I brought up th

Ethan had a decent night. He rested well and so did I. I only woke up when Janice started getting testy. Ultimately she decided to continue doing her job, one time in a row. I was so happy to see my RT friend today. He came to visit in our room and I was not there. I saw him in the hall and said hello and was greeted with a big, friendly and warm hello!  He told me not to get coffee because he was going to Starbucks. I told him I always keep his favorite soda in our refrigerator just in case he visits. A short while later he arrived with snacks, coffee and a smoothie for Ethan. Wow! Above and beyond to make my day brighter. So nice!  Ethan drank 8oz of the smoothie. He also ate some yogurt. This is especially good because his stomach is bound up has been off and he hasn’t been eating as much for the past day or so. Little input, because of little output.maybe bigger input will yield bigger output? Fingers crossed. He took an early morning nap, then a mid morning nap.  As the day went o

3:00 am.  Wretching. Vomiting. Withdrawl. Alarms are going off because his oxygen is dipping and his blood pressure is wonky and low. This poor kid. He has to vomit in a bucket. We turn the fan on. We put a cold washcloth on his head. It is not my favorite noise to wake up to by any means. But I was up and so was he. Then, because his oxygen was dipping a little there was concern of aspiration. Did vomit go into his lungs?After the excitement of vomiting, we went back to sleep. Only to be woken up again for an X-ray to check the lungs for aspiration. Not the most restful night. Breakfast arrived and we left it on a table off to the side, with the bucket back in front of him, while her wretched and spit. Nausea is such an awful feeling. After the nausea passed, Ethan was able to take in some calories with ensure added to some Cheerios. The nausea came back around 10:30. Just in time for our favorite PT car guy to come in.  “How’s it going in here?” He said with a chipper voice. His eyes

I was visited by a friend from 9 Tower than brought me a coffee this morning. How freaking nice! To think someone went through this effort to make my day a little better is mind blowing. Ethan was beyond excited when I got back from the pervert shower. I could see it on his face before I even got inside the room.  “You missed it Mom! I wish you were here!” He had two visitors from 9Tower stop by to say hello. It may have been 5 minutes out of their day but it was worth GOLD to this kid. He had a coy smile on his face and I know it made his day! It’s the little things like this that can be big things to someone else. Ethan ate like a champ this morning. He took his pills by mouth to reduce his fluid intake. We are recording every single calorie with hopes to reduce his feeds enough to allow him to not have feeds during meal hours. I got myself in trouble trying to shut Janice up.  I bumped up against her while I was doing Ethan’s physical therapy and set her off. She started making her

I woke up crippled. The vinyl couch is trying to kill me slowly. I thought we were friends but now we are frenemies. I luckily scored a yoga mat a week ago and have been doing my 10 minute yoga YouTube daily. This morning was extra sore because this couch is as comfortable as a cinderblock. Ethan slept well. Having an entire new set of people having to learn his normals is a lot of work. He had a nasal cannula put on him in the middle of the night because he routinely dips his oxygen when he is in a deep sleep. It is not at all wrong or inappropriate to put that on, but Ethan woke up panicked because he was “regressing” and had no one to ask. So he laid there upset until I woke up. With tears in his big beautifully lashed eyes, we talked about how it’s just a little different here. The shower here, there are two, so the odds of getting in to a shower is already double. Win! The curtain is hung from the ceiling so it only comes down to my belly button area and then there is nothing. Thi

Over night, at midnight, they came in to do an ultrasound on Ethan’s neck.  When he had his dialysis cannulas relocated to his neck, they made a tiny incision past it that was closed with one stitch.  The stitch was taken out two weeks later and under where it was there was a small mass.  A week passed and it didn’t decrease in size. It kind of looks like a nipple on his neck. They found it was encapsulated and dense but that was about it. Apparently human reports do not come with any further recommendations like animal reports do.  So we will see what the plan will be. Janice came down at 5:30 this morning. Thanks Janice. What a way to wake up. Her bitching with her robotic series of panicked beeps. The nurse was unable to return the blood. I told Ethan he may feel tired today and tomorrow. He was panicking because Janice makes LOUD unfavorable noises when she isn’t happy. Hence, the Janice from Friends reference.  Ethan thought something was terribly wrong as two additional people ru

I woke up to the noise of wretching this morning. I went from deep sleep to awake very quickly. Ethan was going through withdrawl. Withdrawl is no joke. He just wretches and yawns and spits. He is hot and cold at the same time. He worries that he may vomit all over the bed and make a mess. Poor kid. Ethan is getting off his medications and apparently it takes several weeks of small weans to undo all the dependency the medications have caused.  It is also annoying because he knows he needs to eat, but who wants to eat when they are trying to vomit and can’t. “I hate this.” He said this morning.   “ I also hate this for you. You have worked so hard. No wonder people with drug addiction have such a hard time getting clean.” I told him. Renal came by today and we discussed when Ethan will be switched over to HD dialysis. They said we still need to work on his fluid intake and if we do it too early it could backfire and then he would have to go back on Janice. They also were concerned about

One of the nurses made these cookies. They are so cute and delicious. Happy Valentine’s Day and National Organ Donor Day!  We never thought we would be in the hospital this long. Ethan was having a hard morning. He wants to eat more and is being hard on himself. He wants to get out of here so badly but is frustrated with his progress. The physical pain he is feeling just from standing and walking is intense for him.  We are massaging and heating and getting him up and moving despite it all.  Ethan napped a lot this morning. Yesterday, Paul came and I got to spend the afternoon with Avery and Jesney. Paul got to visit with Ethan. When Paul arrived at the hospital he checked in at the front security desk.  They gave him a badge and he went up to the 9 th floor. Ethan’s room is the farthest room away from the elevators. As Paul was walking to Ethan’s room, one of the nurses suspected Stranger Danger. She was NOT going to let some weird man she had never seen just walk into Ethan’s room. S

Ethan had a good day today. He was able to do physical therapy, a little less than yesterday because he was sore. We did arms, shoulders, core, legs and also stretched his feet because they were hurting him. He was in his wheel chair for several hours. Ethan got his double lumen picc line out today!!!!! Wow!  Another line bites the dust! He has an arterial line and IV catheter and feeding tube in his nose. That is it. Ethan will be evaluated for speech therapy to help him with his voice. His speech speed is quite slow, but his thoughts are complete and normal. The picc line was 36 cm or 14 inches long. Wow! Ethan said it didn’t hurt at all coming out. Ethan had a leisurely afternoon. He worked more on his wooden car. At dinner he tried a little bit of pizza. I had to cut it up into teeny tiny pieces for him because he has trouble chewing still. He ate a lot of Grammy’s applesauce. He savored the flavor. Little did he know, I added some calories to it with unflavored high calorie paste.