Ethan’s Journey

After my post this morning, Ethan’s night nurse came in and told me about a turn that she did with Ethan last night. She said that she went to turn him and his face crumpled up so sad. She asked him if he was in pain.  He shook his head no. Eyes squeezed shut and a pained look on his face. She asked him if he was scared and he shook his head yes. She told him what was happening and how well he is doing and that he shouldn’t be scared because he has a lot of great people supporting him. He then reached up toward her. She asked him if he wanted a hug. He shook his head yes. She gingerly gave him a hug and then she said she just started to cry. She stood and held his hand until he fell asleep. I thought that was such a gift moment for her because she has put so much work into him. This morning was full of meeting with the renal doctor, doing PT/OT and having respiratory therapy come in. My RT drink buddy has Ethan today so we also like to shoot the shit.  Today’s topic of discussion: The

 Ethan had a decent night. He is keeping things stable. They weaned down again on one of his lung pressure medications. Ethan’s RT buddy over night, talks to him and has talked to him all along. He has had Ethan several times.  When I came back from the shower, I walked into the room. The RT had his back to me and didn’t know I was there. He had his hand on Ethan’s head and was sort of massaging his head, offering him comfort with one hand and holding Ethan’s hand with the other. He was saying things like “you are doing such a great job. You have come so far. When I first met you, you were so sick and now you are getting better. Hang in there.” It was so heartwarming. He wasn’t actually doing anything with respiratory therapy. He was a comforting soul and encouraging voice for Ethan when I stepped away and the nurse was busy. I have a new appreciation for RT’s and how much of a difference they make.  They deal with sputum all day long and most seem happy to help. We are weaning the ven

We had another busy day today. I am tired. I am sure Ethan is tired as well.  My RT buddy brought me a coffe and snack from Starbucks again. I have decided to pick someone everyday and share a beverage with them (non-alcoholic). I have some drinks stashed away in my fridge. I see what they are drinking the day before and then grab that and put it in my fridge. It makes everyone feel good. Rehab stopped by and said that Ethan has a lot of muscle wasting and reconditioning from being bed bound. They are suggesting we get transferred once stable to a place close to here for inpatient rehab. He has a ways to go before than happens. I got the name of the place and will start google stalking it tonight. It is about an 30-45 minutes from here. We will stay there while Ethan gets the rehab he needs to come home and be able to do tasks by himself.  Tasks like holding silverware or turning on a faucet. Going from a laying position to a sitting position. Standing up and walking. We have a lot of

  Ethan had a decent night. He got another blood transfusion because he needed a little boost. It will help him feel better.  The spot that they removed the monstrosity of lines from in his neck, was described as a “big hole”.  It has a dressing over it. Today his nurse is going to tackle undoing the pressure bandage to see what we have there. She is also a wound care nurse. So that is great to have her addressing it. Ethan just seems sore all over. Anytime we move or turn him, he has a pained look on his face and occasionally a tear slips out. It’s not even a pained look, his face crumples with agony. That is difficult for me because I just want to take on all his pain for him. Juggling all his medications to wean them and to keep him comfortable is a delicate dance. Today I am going to continue PT and OT.  Ethan’s nurse is so great. I love that she lets me help. We have been busy with turning and situation and putting Ethan in an upright position, making sure he is comfortable. I tol

Ethan has had a busy day!  This morning I did all of Ethan’s stretches along with the new ones I learned yesterday. It takes about 30 minutes. Ethan’s nurse also happens to be on the wound management team and is determined to heal this bed sore. We are doing frequent turns. I love that she lets me help. I know these nurses are so busy and I can be a useful set of hands. Plus, it makes me feel like I worked out. Ethan’s nurse and I discussed how Ethan’s shoulder looked “weird”. It looked very sore and stiff and it was kind of hunched up toward his chin. Imagine how your body would feel if you hadn’t been moving for the past 8 weeks. I brought this up in rounds and they have ordered a consult with the rehab team.  They will likely come tomorrow.  This will help look at the big picture for healing and hopefully if we intervene now, we can get the ball rolling and ward off some of the frustration if we are moving and stretching while he is “unconscious”. I use the word unconscious because

 Ethan had a good night last night.  He didn’t sleep the whole time but when he was awake he was calm. This morning, after xray came I helped his nurse turn him to stay off his bed sore. He then started coughing because he was getting a nebulizer. His nurse suctioned his tube which he is not fond of.  We had to wedge something in his mouth because he was clamping down so the suction tube couldn’t be passed. After he was suctioned, he pointed. Kind of aggressively pointing. I looked to see what he was pointing at.  “Do you see the Supra?” I asked and was so excited. This is really the first sign of recognition or communication he has given this time around off paralysis. This morning they weaned his opioid down a tiny bit again. Last night his cardiologist popped by Ethan’s room. I was all snuggled into bed and was playing games with Avery and Paul on my phone. “Hey!” He said “Hi” I was sort of confused as to why he was in our room. “We are shutting Ethans feeds off at 2:00 am because w

Ethan has finally gotten to a stage of OT testing today. I had OT (occupational therapy) come and assess him and make sure I am stretching him correctly and see what else I can be doing to make sure Ethan is set up for success when he starts to stand or even take his first steps.  Ethan has kept his eyes closed most of the day but has participated in the PT and OT that I have done with him.  I had stroke boots and stroke arm support on for 3 hours and then off for 3 hours. I learned a few new stretches because OT said his hamstrings were very tight.  His right shoulder is also very stiff.   Ethan’s OT brought a picture of Janice from Friends and we taped it on the dialysis machine. I now say “SHUT UP JANICE” in a snarky tone whenever she makes noise. It is so loud and obnoxious. Also she flashes colors....a real drama queen. Today I was allowed (I was not qualified yesterday) to take care of Ethan’s eye medications. I feel like they look less red today. I could be biased as well. (I mi