1/17 8:35 pm

Today has been very busy. I have not been bored at all. Two hours this morning were spent medicating, turning, PT/OT sprinkled in with explaining machines and what medications were for. We also tried the phone again at Ethan’s request. He can’t even hold the phone with one hand.  His vision is off because of the  ointments and medications he is on. He didn’t even realize I gave him my phone instead of his. 

The nurse has me doing a few of his treatments because he just cooperates with me a little better. We have a system. I do find that if I do more explaining before administering the medication the better. The nurses are zipping around and I have the time to talk through it with him. It also makes me feel like I am helping him. So I like that part of it.

He has given me a few hugs today.  I feel like each one is a special gift. There is a reason this kid is here. He has “died” twice. There is something he needs to accomplish and fulfill. 

The hugs are usually because he is upset and tears are pooling in his eyes. He is not painful. He is frustrated and scared. He will reach up and shakily put an arm around my neck. I feel so helpless. So I help the only way I know how.

I give him a pep talk. We go over what all the machines do and why they are there. We discuss his medications and how they are going to goof up the way he sees, moves and thinks. We also go over that he is kicking ass and he is a freakin tough kid, and even though he is scared, he needs to trust me he is getting better and stronger each day. Everyone is here to support him and make sure that he stays safe and heals. It is usually followed with, you are the strongest person I know. You are doing a fantastic job.

It’s hard to see him upset. He has conquered so much but I can only imagine how frustrating it must be for him. I even told him that. The two of us were just hugging and crying together. I was wiping his tears away. “You can do this! You have come so far!”

Psych came by and the doctor talked to him a little bit but Ethan fell asleep mid conversation a few times.

“Your questions must be totally boring for him.” I said as Ethan lay there asleep. We laughed. Ethan woke up briefly and the doctor asked him if he was able to sleep.  Ethan promptly fell asleep on cue. “I am going to go with.....he is NOT having trouble sleeping.” I told the doctor.

Rounds happened, we are starting to slowly wean the second of the three pulmonary hypertension medications. The third one he will be on until the doctors deem it is safe to stop, likely a year or two.

Also, they are trying to encourage Ethan to breath on his own more. His respiratory rate is slow. Likely due to his medications. They are slowly going down on his sedatives still. This will happen more and more as the days go on.

His throat hurts from the tube that has been in there for the past 8 weeks. Sometimes I watch and rewatch his YouTube videos just to hear his voice. I imagine even when he gets the tube out, his voice will be wonky for a few weeks as he heals.

Janice broke down. I made Ethan briefly smile when I flipped her off while she was making her loud horrible Janice noises. Of course the circuit came down. Every time it is a rush to get as much of his blood from the machine back into his body.

Ethan then developed another fever. He had blood, respiratory and urine cultures yesterday due to fever. He’s one a heavy duty antibiotic for his lungs currently as well as a profylactic dose of a different medication.

His abdomen is becoming distended. I noticed it and mentioned it to the nurse. We tried warm packing his belly. I am afraid his phobia of going to the bathroom without a traditional toilet is so upsetting that he is holding it. Probably not even intentionally, it is a stress induced, anxiety based issue.  He says it doesn’t hurt when we push on it. With the heavy dose of pain medication he is on, he could get run over slowly by a bus and he wouldn’t even feel it.

Today was full of positives. It was also hard. Ethan is very upset with how things are going.  He still gave me a bunch of hugs so that’s ok.