Ethan’s Journey

BIG NEWS!  Ethan is down to TWO pumps. It looks like more but a couple of pumps are just for injections. The look on Ethan’s face is because he was trying not to fall asleep. His eyelids were so incredibly heavy today. But look at that dandy pole. A single and simple pole. A pole with 2 pumps. Today was the first day he has worn a shirt that was his, in 12 weeks. He also wore his shoes for the first time in 12 weeks today. He was tired because he was up walking again today. His legs, feet and back muscles were sore. But he kicked some ass and pushed through to walk down the hall. He sat in the beautiful, sunny and off limits room to rest.  He then walked back down the hall. Ethan then sat in the chair for a few hours dozing off. Hence his face in the first picture. We are trying to get Ethan to mechanically eat more instead of relying on feeds for nutrition. We also realized that he can swallow pills. This will allow for him to start taking his medications in pill or capsule  form and

  Today is going to be a big day.  Ethan is supposed to have a diuretic challenge. Ethan will be disconnected from Janice. I had a chat with Ethan’s kidney. It just has to prove it can make enough urine to switch Ethan over to HD or hemodialysis. We need to wake this kidney up because it has an important job to do.  Then his renal doctor came in and said she was not going to challenge him at this point. They know he is in kidney failure and are going to just keep going with continuous dialysis until they can get his fluid amounts going in, reduced. She said that it doesn’t make sense to put him on HD if he is taking in a large amount of volume because he would continuously be fluctuating with fluid in his heart, lungs and body and stress the kidney. So now I am trying to get him off IV feeds which will reduce a significant amount of fluid going in. Now that Ethan is eating more, he can handle this. At some point this morning he has to have his nasal gastric tube backed up a bit more an

Ethan has noticed some odd little changes in himself since he has become more aware. I did read that There can be changes of personality, preferences, alterations is emotions/mood, changes in identity and even some people report having memories of the donors life.  Scientists think it could be due to transferring of cellular memory. Sure...sounds scientific and believable. Ethan has noticed he doesn’t enjoy sweets as much as he used to. This is the kid who had ice cream daily. He is turning down ice cream in favor of fresh fruit and vegetables. He has never really enjoyed cucumbers. The other day I was eating a salad with cucumbers and Ethan asked if he could have one. I whipped my head around to see if he was joking. He ate it and liked it. I have noticed that he likes to hug more. He is able to talk to strangers a little easier. Just small, subtle changes that could be explained away by a traumatic event, or maturing or who knows what the donor was like. One of the nurses on the floo

Ethan is weighing in at 90 pounds. He started at 127. He is just a shell of himself and weak but gaining strength everyday. He wants to be strong. Breakfast came and he ate a bit of pancake, a bit of hard boiled egg a little bit of crepe.  He then asked for some fruit. Man he plowed through the fruit like he was eating for his life. He ate every piece of fruit and then asked for mandarin oranges.  I got him decent for the day. Combed his hair, helped him brush his teeth. He wanted his phone. He had me get him some ice water and ice chips. Then all the doctors started coming around. Ethan and I slept in until 7:30 ish. Then I had to fight to have my turn in the shower (I am being dramatic).  We did Ethan’s stretches and wrist, ankle, knee, elbow and shoulder exercises. It takes about a half hour to do them all. Ophthalmology came, nephrology, the critical care team, preparing their plans for rounds. Rounds resulted in more slight changes and weans. We discussed weaning his IV food. When

 I finally was able to get Ethan’s phone situated. I did have to do a full restore and he lost almost everything. He lost any text messages he may have received in the past 11 weeks. He was super bummed. He said he has missed a lot on Instagram. Ethan has graduated to getting an X-ray to once a week. Woo hoo! Only interrupted once every 7 days for that nonsense.  It also means he is getting better. We also got the news that today we get to do a Dialysis hiatus. The goal is to get Ethan more mobile and motivated to get moving.  Janice will be off for 12 hours. She will then go back on tonight.  The plan is to eventually get him to a couple hours of dialysis 4 times a week. He has the little kidney that could.....it is still making tiny bits of urine even though it doesn’t have to. Janice is doing all the work and Ethan’s lone kidney is like “hold my beer......watch this...” and still producing it one on top of it. Ethan’s renal doctors are thrilled. Ethan had quite a morning. He started

We slept GREAT in our new quiet room. Xray came in at 4 am. Ethan’s xray was fantastic. Ethan had a bug up his butt to set up the play station steering wheel so he could play Gran Turismo. “Can you set up the steering wheel?” “Ethan, I love you, but I have to go back to bed.” At 6:30 am I woke up again. Ethan was waving to me. “Can you set up the steering wheel?” He asked. “Sure” He also had picked out a smoothie he wanted to try the night before, and wanted me to order it on grub hub. I plugged in the coffee machine and walked around the room in a daze. What am I doing I asked myself.  Oh yeah, finding the steering wheel. I wandered around the room looking doe the steering wheel. Clearly I need my coffee. I go to get my coffee as I should have been brewed. My cup was empty.  I had a wave of confusion and disappointment wash over me. What went wrong? It was plugged in....crap I forgot to turn it on.  “Good Morning, I got you coffee!” I heard our favorite nurse say. It was as if the clo

Wow! Overnight Ethan came off the nasal cannula and is breathing room air and maintaining his oxygen level ALL ON HIS OWN.  Day by day, I have been able to see more of his face and less of the tubes and tape and medical things that littered it. Ethan’s intestines are working pretty well but he does feel nauseous after eating, drinking or getting medications. I left our window shade open as we slept last night and this morning Ethan pointed out how beautiful the sunrise was. I was happy to share my standard line that I have said for years to my kids regarding sunrises and sunsets. In my most sincere voice I say “wow! That is really beautiful.........it’s almost as beautiful as your mom.” I have enjoyed brainwashing the kids to say this. Someday they are just going to think it and laugh. Ethan experimented with food today. He had some banana dipped in vanilla yogurt, rice, green bean (that was good but he had to spit it out because it was hard to chew), cucumber 🥒, orange juice, and he