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

Ethan had an echo with the profusion team. They think he is ready to come off of ECMO today. It is a relief from the perspective that every time he moves his legs I am worried he will dislodge a cannula and bleed out. It seems I am not the only one with this fear as people hustle in when he starts flailing. Recently he tried to get up out of bed and was going to be completely nude. We discussed the strict policy the ICU has on streaking and how that is not appropriate. I am sure he has learned this behavior from his father. So now the nurses are preparing to move Ethan with all his 16 pumps (we gained a few over the last few hours) to the OR. What a disaster. We may be eliminating some machines though and clearing out this room a little. So basically in Ethan’s left leg is a cannula in his femoral vein and in his right leg there is a cannula in his femoral artery.  They can remove the cannula in his vein and apply pressure to stop bleeding. Easy peasy. The artery is different. That’s t

 I went back to the apartment this morning to have a private and clean shower. No one banging on the door to see if I am almost done (you can hear the shower running people, where is your common sense?). When I got to the building I went to put my key fab up on the device that unlocks the door to the building. I forgot there was a step. I fell into the door as it pushed open and almost hit a lady trying to come through the door. She probably thought I was drunk. The only injury I sustained was to my pride as I profusely apologized and tried to convince her I wasn’t drunk. Which probably made her think I was even more drunk I made my way back to the hospital. I found out that while I was gone, Ethan had somehow pulled out his arterial line in his arm.  They were able to replace it but he had a bit of bleeding and it was all over his bed and hand. Everyone arrived for rounds.  After about 5 minutes, Ethan also decided that he would prefer more sedation. He kept trying to sit up.  He was

 Ethan was very agitated yesterday evening proving that he did not care for their reduced sedation protocol. He was confused and I think I repeated that he couldn’t sit up 500 times. “Are you trying to sit up?” He nodded yes. “You can’t sit up remember, you have too many tubes and you need to lay flat so you can heal.” I was like a broken record. He kept trying to pull himself up. He was grabbing at his tubes, I secured his hands even tighter. I kept asking can he “have something more?” He had people scrambling on the floor. His nurse, his doctor and others trying to adjust his dose of morphine, dexdemetomadine, Ativan, versed, methadone, and then adding dilaudid. Once they added dilaudid, they had to go up on the dose because Ethan, the Incredible Hulk, needed to get up and do some stuff. The thing with opioids is that you can build up a tolerance. Seems he is doing that. So they will have to deal with that as they remove some drugs. It was about 2 hours of trial and error with lots o

Our room is getting a bit crowded with machines.  Ethan had his echo this afternoon.  His cardiologist came by and said that his heart is looking a little better. His severe heart failure of the right ventricle has been reduced to moderate heart failure of the right ventricle. Don’t freak out too much with that term. Heart failure by definition is a heart that isn’t pumping efficiently.  We already new that so those terms sound scary but he can overcome that term. They should change the name to something less scary like Ethan needs “heart optimization”. Like a car engine that needs some tuning. Ethan’s lung function has improved so they started him on an inhaled medication for the pressures in his lungs. They gave him a half dose and he tolerated it. He will soon get his next dose which will be a full dose.  As long as he tolerates that, he will get another dose about 11 pm. If things are still stable, he will get his ECMO turned down a little and make his heart do more of the work. It

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

 Ethan had his "healthy kid" check up at his regular doctors office on Thursday.  After talking to the doctor, we agreed that we needed to get Ethan vaccinated prior to his immune system becoming severely taxed with a transplant.  Last year, Ethan had a VERY sore arm for about a week from the meningitis vaccine.  He had to get that boosted, along with the flu and pneumonia vaccine.  3 pokes. Ethan isn't bothered by the pokes themselves.  We talked about how weird that was.  He said that the pokes didn't really hurt.  We then talked about everything he had been through in the past 6 months and how his pain tolerance is likely much higher at this point.  We talked about how the nurses had trouble putting in an IV catheter at both hospital visits.  He endured multiple pokes with that with a bigger gauge need I might add.  He was nervous he wouldn't feel well afterward and he had to start school the next day. First day of senior year. He also had to work on Saturday a

You get the jist of the picture.  It is a little smushed. Oops. 2020 has been a crazy year.  EVERYONE will agree on that as everyone has had their own hardships to deal with.  One of our hardships was to get Ethan's health insurance to cover him going for evaluation.  When we started entertaining the idea in April that we were headed in the direction of transplant, we were told to choose a children's hospital.  The criteria given that we should base our choice on was reputation, proximity and to consider the allotment of hearts.   We were originally told that each hospital gets their allotment of hearts within a 500 mile radius of the hospital.  Hospital's that were closer to the ocean had less of a pool of available hearts.  Due to reputation, location and the fact that Pittsburgh had a 500 mile radius of living people the entire circumference, it only seemed like an appropriate fit. We moved forward and had the evaluation set up for the second week of July.  Wow! things w

This afternoon Paul and I had a phone call meeting with the doctor assigned to Ethan’s case while he is in NYC.   https://www.columbiadoctors.org/irene-d-lytrivi-md Apparently there are 6 doctors and 5 PA's (or was it the other way around?) and they all work together as a team for each patient.  I feel it went well.  They gave us a little bit of information about the transplant program and we discussed setting up a time to get Ethan there for an evaluation.  Their evaluation (unlike Pittsburgh) will only take 2 days. Obviously we will have to allot for travel in there. Here is the bright side.  Paul can go! They will allow both parents for the evaluation and transplant surgery, but only one parent can be with him while he is in the hospital. The Ronald McDonald house is closed, so that is a bummer.  It would have been helpful for us to be able to stay there but once again STUPID COVID strikes and screws us again.  They said that Columbia Medical Center is close to the George Washin

My kid needs a heart transplant.  Those are hard words to hear.  17 1/2 years ago, Ethan graced us with his presence.  He was a healthy little 8 lb 4 oz boy.  He was a good little baby. He was friendly, usually only cried if hungry, tired or soiled. When he was 8 months old, Ethan was diagnosed with Shone Syndrome.  It was found by accident.  He had the sniffles and I wanted to make sure he was going to be healthy enough for his upcoming inguinal hernia repair.  His doctor detected a murmur.  She called and got us an appointment within 2 hours at pediatric cardiology.  6 hours later......He had a narrowed mitral valve, narrowed aortic valve, bicuspid instead of a tricuspid aortic valve and a narrowed aorta.  His aorta was so narrowed that he needed to have surgery.  He had to have the narrowed portion removed and the aorta re-attached so he could get normal blood flow to all his cute little fingers and toes.  They cut his blood supply off to his brain for 11 minutes.  We were told he m