Ethan’s Journey

 The neurology team came by and said that nothing big showed up on the CT scan. Phew! Neurology was worried Ethan may have a brain bleed because he’s now not closing his right eye either. If he had a brain bleed, they would have had to do emergency surgery. However, he is paralyzed so it could eventually resolve itself when he is able to move. Finally this kid offered some great news!  There were very minimal changes today with Ethan’s medications today. They are just stabilizing him. We are back up to 14 pumps. I could be disappointed but I am thrilled. I am glad I have a kid here that needs pumps. Yesterday for a period of time my child died. It has provided a uniquely intimate perspective. I was behind someone in line at the cafe. She was having a fit they ran out of yogurt. A huge fit. Who cares. Pick something else lady. Go home and be thankful your loved ones are still around. Step back and look at the big picture. My kid is still with us today. Ethan Will at some point ...

  Ethan went to get a CT scan to see if the cardiac arrest caused any issues in his brain. The way this kid has been I am holding my breath a little. I feel like I need to be on my toes to catch anything he throws me. No one likes to be hit in the head because they weren’t paying attention. Today at rounds, they decided to take things VERY slow and wean down some of his medications. Hopefully slowly enough that his fragile system can handle it.  His doctor described him as a “problematic case”. She said he got her attention and she is listening. Teeny tiny little movements in his medications for today and just see how he does. At least one more day of paralysis. So today was mostly a day of rest. Ethan’s PT car buddy stopped by. He ordered Ethan a 1/24 scale of his car.  A 1983 Toyota Supra. He wanted to get a bigger one but apparently the company only made a small number of them and there were none available in the world. This sweet man even called Japan looking for one ...

 We had a steady night. Blood pressures remained steady. Lung pressures remained steady. Ethan’s heart and lungs are working.  Already it’s a better day than yesterday. I don’t know what the plan is for Ethan today. I know that what ever it is, it has been carefully planned with many smart brains. Speaking of brains, Ethan’s EEG was finally finished. Good news! He has brain activity.  I did Ethan’s physical therapy this morning already. I have to move his fingers, toes, wrists, ankles, knees, elbows shoulders and hips. It’s a process. I apply his special boots that I have now dubbed his “stroke boots”, to position his feet and legs and prepare him for less muscle memory loss for when he starts walking.  I also put on his “stroke wrist splint”.  That helps to keep his fingers in the correct position. These are to help the reduced mobility on his left side. I was second to the shower, yet still first. The lady before me took a perfume bath. Fluffed it all around t...

The EEG team aka brain wave team came in to start placing leads on Ethan’s head again to make sure the earlier event that happened today didn’t cause further damage. Ethan had been stable most of the day. A little bit ago his blood pressure dropped again and he started to become unstable. His critical care doctor was concerned and started tweaking things again. She stopped the EEG team in the middle of applying the sensors on Ethan’s head and had her leave, wires and some sensors on his head. There are 4 people parked outside of Ethan’s door, just watching. Watching the monitors, watching Ethan and his breathing, lung pressure and blood pressure.   His new cardiology doctor started tonight. One that has seen Ethan before. Ethan had an echo and it was discovered he has fluid behind the heart. Upon examination, it was old blood and not a byproduct of CPR.  This is good news. Ethan is getting another transfusion of blood to help his blood pressure and heart in general. I am assur...

  Ethan has been motionless since his big “tantrum” this morning. The more and more I think about it and talk to the doctors, I am so thankful if this was bound to happen, it happened here. Ethan stepped in shit this morning.  As Ethan’s nurse left this morning, late, because she was doing chest compressions on my child. I stopped her. “Thank you for saving him.”  His new nurse came into her shift right in the middle of the shit show. This poor nurse has been hustling and bustling with lightening speed ever since. What a way to start your shift. They have determined that his severe pulmonary hypertension caused him to go into crisis with the agitation from the X-ray. Once he was agitated, his oxygen levels dropped. His blood pressure dropped, but lung pressure remained high and he went right into cardiac arrest. They were able to print out his EKG from the exact moment to see what was happening before as well as after so we can avoid this from ever happening again. Ethan’...

 I woke up this morning. Right before the x-Ray person arrived. The X-ray seemed to really stimulate Ethan. He began to get a little delirious. Then he became a lot delirious. They had weaned his sedation over night and he was really out of sorts. Out of sorts in a concerning way and I asked to give him more.   His breathing tube was making an odd noise with every rhythmic breath in. It was a flapping noise, like the cuff in the tube wasn’t blown up all the way. I asked about it. It was not a normal sound. The respiratory therapist came in and was tweaking some settings. Ethan was trying to tell me something. He kept pointing at the door and slamming his hand on the bed.  He was frustrated. It seems like he was pissed that he was tethered because he just wanted to leave. He was kicking his feet and moving his rear by pushing up with his feet. His oxygenation started to drop. I had him focus on his breathing and he was trying to take deep breaths. His eyes kept rolling bac...

The snow has started to dust over the city, like powdered sugar. I can't lie, I am a bit excited.  I don't have anywhere to go and have lots of snacks. The only thing missing is a fireplace.  Why wouldn't they have ICU rooms with a fireplace? (Oxygen is highly flammable). Ethan