Ethan’s Journey

 It has already been a busy morning.  This ICU room has been like a busy freeway, people hustling and bustling their way through to examine, listen to and medicate Ethan.  They have lifted some of Ethan's sedation.  He is still very sleepy but there is almost no delirium.  That is good. However, he is now more awake and trying to talk.  Talking is just mouthing things to me and me having to guess. We have established that we will never be partners in a game of charades because I suck at it.   Ethan has been very curious of what his machines are for, he asked to be sat up and his eyes look slightly better than before.  If I am sitting on the window seat, he knows he can whack his hand on the bed to get my attention. He will try to mouth what he needs.  He does it so fast and makes super long sentences.  It is impossible to figure out.  I keep saying "one word at a time".  Today we are going to use a letter board but I am not sure how well he sees since he is still on sedat

Ethan is doing well this morning.  He is in a sitting position (still paralyzed and comatose).  His eyes continue to heal, they are still taped shut. I have him listening to a performance car Netflix special.  I was hoping the engine revving on the show will rev his engine too. He is responding positively to the increase in lung pressure medication.   Today will be another big day for him. One of his surgeons cam in today and told me that she weaned him off of Heparin, so that she can remove THREE of his four chest tubes (WHAT????)  Ethan is overachieving right now.  What a super surprise for today! It will be nice to head into the weekend with those tubes gone. She came in already and removed them. 3 less tubes. Nice.   It was mentioned that they want to wean him off the paralysis medication. I understand why, however, Ethan has proven they can NOT regulate his sedation well at all.  He is a force to be reckoned with. So I am a little hesitant until they can get this breathing tube ou

  It was a relatively quiet night. Ethan’s blood pressure is low.  His breathing tube had to be suctioned a few times. They have this tube they insert in his breathing tube to vacuum out the mucus. Then you can see it in a clear tube going to the “holding tank”. Sounds gross but it gives an idea of what is down there. Blood?  Mucus?  Ethan hates the process. He feels like he can’t breathe. His xray I thought looked like it had some improvement from yesterday. I am not a radiologist so who knows. But I feel pretty good about my assessment. He is in an upright sitting position today. I am happy for that. I don’t know when they will come off the paralysis medication. I don’t mind not having to tackle him. Day 18 and we finally are seeing some gut movement. I was beginning to think he would be full of shit forever. This still may remain true but not in a literal sense. He is getting a culture done because they are concerned he has C-diff. Everyone is now in basically a hazmat suit that com

Apparently Ethan has corneal abrasions added to his list of complications. I am glad I urged that issue to be addressed. We can  be a little more aggressive with his eye lubing to head off a bigger problem. They will have to tape his eyes shut at night. He has now been started on an antibiotic ointment for his eyes and they should recover fine.  I am sad that today is the last day with his current nurse. She gets the next few days off. Tomorrow will be a new nurse but hopefully one we have had before (and liked). Ethan is starting back up with a fever again. Everyone is on it. He is getting blood cultures daily still but we don’t need any infections anywhere. Another respiratory culture is going to be done since he still needs routine suctioning. He hates that. My friend Heather compared Ethan to Jason voorhees from Friday the 13 th. Jason was the killer that could get shot multiple times, hit with a shovel in the head and more.  He would still be able to ambulated around like nothing

So X-ray has come and gone, the perfusion team has come and gone. The surgical team has come and gone. They changed the dressing on his incision and that continues to look fantastic. I have deviated back to telling Ethan complicated lies to make him stop asking for stuff. This is a parenting trick I have exercised many times. It really works.  The key is to make it believable and say it with confidence. My lie for today: “The magnetics in the iPhone interact with the titanium gears in the pump. So we have to keep your iPhone off.” Total made up bullpoop. But it seems to be working.  I will be writing a book with more nonsense parenting tips later. I am not sure what the title shall be.  I also will focus on the fact that I get a lot of my parenting tips from animals as well as that I have absolutely no credentials. I am sure it will be a success. Rounds had 17 people in attendance today.  Ethan's xrays are continuing to get better. If you look at the pictures, I have labeled them b

  When I woke up this morning I could feel the rats nest on my head.  I sat up.  It is so weird to wake up with strangers in your room.  They are in and out all night. “Hi Mom” Ethan’s nurse cheerfully said to me. “I know your not going to believe this, but I wake up this beautiful every day.” I said. She laughed. I could see some of my hair going rogue beyond my face.   Also, it is so gross to sleep with a mask on. It can’t be good for me. Ethan had a relatively quiet night. He is stirring more and and has started asking for his phone.  He doesn’t realize his pants are gone and keeps thinking it is in his pocket. Ok we are back to the “I want a toilet” stage. Handcuffed to the bed again, Ethan stirs when they move him or do anything with his breathing tube. His blood pressure sky rockets. Neurology will be happy. They can get a good exam on him. With all this exercising of my patience, my patience should be a robust beast asking “which way to the weight room?” because it’s constantly

Well, I accused Ethan’s nurse of being a witch and practicing witchery on my kid. “What kind of medication are you giving him?” I asked as I showed her a picture of one of Ethan’s pumps.  I was kidding of course. Luckily she also got a nice, deep belly laugh  out of it. I saw the number flash on the pump and thought what in the.....tomfoolery is going on here? Ethan was NOT a fan of the decision made to stop his Versed cold turkey. He started having labored breathing and became unstable with his blood pressure. They turned it back on but half the dose it was and he seems much more stable and comfortable.  The new plan is to wean down by small amounts on everything and see how he does. They are tweaking his medications so that he doesn’t come out of this a drug addict. That seems like a realistic goal. One of the parents on the floor has very very poor bathroom etiquette. I saw she was here today and have avoided the floor bathrooms all together. I go to the tucked away bathroom a coupl