Ethan’s Journey

Midnight, 6 hours late, is when Ethan had his ultrasound. He was never taken for MRI because they couldn’t get clarification on the orders. Needless to say, we didn’t get restful sleep. Ethan was woken up this morning with a blood draw. Then he got his vitals, then an exam followed by 2 mouthfuls of medication. Then I brushed his teeth and his hair. We didn’t get to change his clothes before he was taken away for MRI which we found out about as I was brushing his teeth.  They took him away so quick that we had forgotten to take his EKG leads off. Those you don’t want in an MRI. Ethan made them bring him back because he wanted ME to take them off. I removed them carefully with lots of adhesive remover because they have pulled his skin off and bled in the past. They took his back down. As he left, the team had already gathered around our room to do rounds. Ugh! After rounds, the kidney team came in to make sure it was ok with me to use contrast for Ethan’s MRI. He had just been sitti...

Ethan is proving to keep me up late. I don’t sleep well as I am woken up each time the nurse comes in to do vitals or medicate. I can’t wait to sleep in my own bed. The last couple of nights I haven’t gotten a proper allotment of sleep and I am starting to feel it emotionally and physically. I explained to him that I am old and want to go to bed at a reasonable time and after 9 pm (don’t judge me) is hard when I am not getting a full night of sleep and they wake me up early every morning.This is a work in progress and I am hoping he gives me a break. We started the day with the news that dialysis wasn’t going to be at 5 pm like planned, it will be right in the middle of the day. That means we scramble a bit to make sure PT is scheduled around that. PT is one thing that Ethan needs so desperately. We had PT outside today. Ethan walked in the sun with his walker. He then walked with assistance down and up the stairs. He walked on the green grass for the first time since last year. We saw...

We had a good day today. I work Ethan up at 9:20 for his PT appointment at 9:30. He was in a daze and was extremely tired.he was able to push through PT and kick ass. He used the walker and was able to go around the loop of the floor twice. It happened right during rounds and Ethan had to make all the people move. His tired face was hysterical. He was holding his eyes huge with a blank look on his face. I was laughing and asking him if he was ok. Ethan had a steady stream of people in all day. He was getting frustrated with the steady stream. He was getting emotional due to the sedation weans that happened recently. This weaning process takes forever. It totally goofs with everything. He had to have a new catheter put in. Another poke. That sucked but the person that did it was awesome! It went in smooth like butter. In the afternoon, we strolled up to see our friends on 9 Tower. The reception was like no other. Ethan was so happy to see his friends. He was giving out hugs like they we...

We had a good chat with the kidney doctors today as we explored the possibility of getting a fistula. This would be another surgery. A fistula is when a vascular surgeon take a vein and artery in an arm and meshes them together to make one large vessel. This will allow for easier access for dialysis moving forward. It will be a big soft blob on his arm. It will be a bit unsightly and non reversible. It also will allow Ethan to have his vas cath removed which has a chance for infection. His vas cath is what they use currently for dialysis. I did some thinking, and he could make up a wild story about his arm vein. For instance, he could tell people he traveled and picked up a parasite or he is infested with subcuticular snakes. There is more of a focus on kidney transplant. His kidney function isn’t really improving too much. We still have time for his kidney to wake up but with each passing day, the likelihood is less and less. I brought up the fact that he has a life he wants to live a...

Sleeping beauty made up for his long night of vomiting. He went to bed around 8:30 pm and slept until 11:30 am. We got the results of his echo from the other day. Ethan’s doctor was delighted to report that “Ethan’s heart function is beautiful and healthy.”  She also went on to say the radiologist used the words “hyper dynamic” in their report which Ethan’s cardiologist said meant his heart muscle is in the top 25 percentile for strong pumps. She seemed impressed and happy by that. This week Ethan will be going for his MRI to look at his brain. They will assess the brain injury he sustained from his stroke.  We also found out we will not be going to Blythdale rehab center. Ethan’s kidney failure and need for dialysis were a factor as well as his need for a single room due to his immunosuppressive. They did find us another place to go that could facilitate his need for dialysis. It’s in New Jersey. My criteria was that I didn’t care where we went, I just needed to be able to st...

Last night sucked. Vomiting multiple times. Got about 3 hours of broken sleep collectively. I thought I was past the waking up in the night with a sick kid stage. One never knows how quickly they can sprint from a dead sleep until they hear their kid vomiting.  I may qualify for the olympics on that one.  Ethan developed a fever of 102.3. That is especially not good for a transplant kid with no immune system. Then came the blood culture, labs, xray and the nurse told us she would get us a “poop hat”. I looked at her for a moment, trying to decide if it was a prank. “Is it like a cowboy hat or more of a sombrero?” I asked. I had these grandiose visions of making this hat a fashion statement on the streets of New York City. In my vision I couldn’t decide if the power of the “poop hat” would be like a suppository (like you look at someone while wearing it and make them poop their pants) or if it would be at face value just a trendy fashion term. Either way, I was excited to see w...

 This morning was a shit storm. We woke up. Ethan used the bathroom which is so exciting still to have in our room, produced 10 ml of urine, AMAZING!!!!  We got him on the couch, brushed teeth and hair. Then the doctor came to visit. Then OT came to help Ethan take his first shower. She brought some fun signs for his walker. How fun! EKG cut in line and did their test first. Echo showed up and was turned away until after OT was done. Echo lady was pissed and created drama that was later described as “typical behavior” from that individual. Finally, getting Ethan ready to go into the shower and then rounds happened. Cardiology wanted to do an exam but Ethan was unavailable. They were cool and just decided to come back later. We divided and conquered. I hopped on rounds and OT did the shower. While rounds and shower were going on the dialysis guy showed up and needed access to the bathroom to set up all the dialysis equipment. He was turned away until the shower was over. The sh...