Ethan’s Journey

This morning Kristen and I ubered to the hospital. “Do you have your id?” Asked Kristen. “Sure do!” I responded. Soooooo….I THOUGHT I had my id. Turns out when we got there security asked for it and I did NOT have it. I offered a DNA sample, but the guy settled on an insurance card with my name on it. Is anesthesia brain a thing? If so, how long can I use that excuse? I really thought I had already moved my id. I also used the word suitcase instead of couch today. I thought I was prepared for the “binding” after surgery. I did all the right things like they told me. Took all the medicine they told me. Ate fruits and vegetables as well as drank my brains out for my uni-kidney. Today was THE monumental movement. I had the breakfast of champions. 2 colace, a glass or miralax, and an English muffin. My belly skin felt so tight, my belly swollen and sore. I even had a nightmare last night, that I was pregnant (at 44!!!) likely because of my stomach. We got to the hospital and things were of

 I slept well and past the time my pain meds were due. Don’t get me wrong, I am still pretty sore. My skin feels tight, like it is going to rip open. It is swollen and bruised. It feels heavy. On my back, on my left side (the kidney they removed) there are no incisions. I feel deep soreness. With that being said, I am still doing my breathing exercises, drinking my couple liters of water, walking and progressing. Everyday I can do a little more. Today I was able to bend down and grab something off the bottom shelf of the refrigerator. Ethan is struggling a bit mentally. He is upset because everyone is on his case to drink more. They are on his case because the more he drinks and flushes that gorgeous kidney he has, the more chance for it to remain healthy. We are now entering the phase of transitioning from the kid that is “critically ill” to the kid “formally known as critically ill” (like Prince) . His body wouldn’t allow him to feel the way a medically unchallenged person feels. He

Woke up in the middle of the night an hour and a half past the time when my medication was due. I was still able to get up on my own. I took my medication but knew I needed help laying back down. I woke my brother up to help me back down onto the couch. I find the couch far more comfortable than the bed, so it have claimed it.  I have been icing my stomach round the clock. It offers great relief.  I woke up 6 hours after my middle of the night pain dose. So the medications are really helping. Ethan will go Monday to get out his dialysis catheter out. They have already started to withhold some of his anti-clot medications so that he will be safe and able to clot such a big vessel. They have discussed doing it under a local anesthesia, like lidocaine. Ethan is excited about it. Paul said today he is just so relieved that things are going well. One of the doctors/nurses told him he may get the new title of soonest kidney transplant patient to be released after surgery. He had one of the l

I woke up today. I slept well. I woke up at midnight when my pain medication was due. I took half of what I was supposed to. Wow! Slept another 6 hours. I woke up and took the same reduced amount of pain medications I had at midnight. Then at noon, JUST Tylenol. WOW!  I drank coffee this morning. I ate some fruit and oatmeal. Wow! I am still sore but much much better than yesterday. Phew. Ethan had a good day too. They started him on a medication to combat his anemia. They pulled his urinate catheter and he actually WALKED to the bathroom because his kidney is working with NORMAL kidney values. Ethan said “this is the first time in my entire life, that all my organs are functioning properly”. The plan is that next week Ethan is going to get his dialysis catheter kicked to the curb. No more stupid dialysis! Woo hoo! Ethan (ahem and his family…friends and many others) have waited a long time to see this happen. He will be able to shower, swim or what ever he wants. Freedom.

I woke up is pretty significant pain in the middle of the night last night. I was sleeping on Ethan’s bed at the apartment. He had decorated it with Christmas lights pre-transplant. As I mustered all my might, to sit up, with debilitating waves of pain that made me immediately nauseous, my head got caught in a loop of the Christmas lights. I choked a little, it hurt as I thought I was being assaulted by something but was finally able to stand and shuffle my way to the bathroom. I ended up taking another pain pill as they had cut my dose in half to go home. I was able to fall back to sleep in the couch and it felt better for me to sleep there. This morning, I woke up pretty sore and bloated. My stomach hurt so bad. I had a few goals for myself. Walk, drink a lot, eat some protein and do my breathing exercises to avoid pneumonia. Kristen, my sister in law, was my nurse today. She helped me get off the couch, got me things to eat, however I felt so bloated, it was hard to eat. I give her

Apparently one of Ethan’s doctor’s caught wind of that I was stuck on a stretcher for  over 8 hours yesterday. She made a call and shortly thereafter a bed arrived for me. Wow! It was so much more comfortable. About another hour or two went by and I had gotten a Room. It wasn’t the VIP room they had promised, but i LOVE it. It is small, has a cold ew of the bridge. Yesterday, I told the nurses to tell Paul, when they called him to say my surgery was done, to tell them that my “gender reassignment surgery” was all done….just to make Paul sweat a little. Ha ha Today I am feeling sore but have been walking around the room and sitting in a chair. Motion is lotion. Ethan got up and walked too. Yeah! He is realizing this surgery went better than the last time around. He is excited about that. I have felt so tired today. I took several naps.! I had a little bit of food. Hospital food is not the best. I am still quite bloated and my gut is swollen.  I WAS RELEASED. I am back at the apartment.

Well…so far I am not impressed. Last night We had to fight for answers and didn’t have a clear answer until 10:30 pm. We still didn’t know what the surgical morning would look like. Together? Or separate? The answer is Ethan and I were split up in the morning. I went to the adult hospital. Paul stayed with Ethan at the children’s hospital. A tornado of fear plowed through our room. Paul got a front row seat to the degree of miscommunication that happens. It’s like trying to herd cats. It’s no ones fault really. That is why it is so important to have an advocate. I was disappointed that we were told we could wait together….but I was trekking alone to the adult hospital to wait. Good thing I am an introvert. I didn’t mind it. It would have been nice to give us a heads up on that one though. Paul had explicit instructions and I told him to call me and put me on speaker phone with the anesthesiologist for Ethan. I think the degree of separation is going to be the hardest. It could also be