12/4/2021

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 longest recoveries after the heart transplant and the shortest for kidney…..that would really be something.

Ethan has been eating really well. It will be interesting to see how he gains weight with all his organs healthy.

I was able to go for a walk (at a snails pace) around our block. Paul was with me. We had mindless chatter about life. I really loved feeling the crisp air in my lungs and the sun warming my skin. Wow! The sky was crystal clear blue and made all the New York apartments pop with color. The neighborhood we are in is relatively quiet. 

I have been able to join rounds every day via the phone. It is nice to be included so I can feel like I have contributed some. Truth is, his training wheels are off and he is going. He was also advocating for himself and the nurses were impressed about the points he brought up. He has had to gain medical knowledge in the last year out of necessity.

We will remain in NYC until at least mid January and will reassess at that time. Ethan will have frequent appointments with his nephrology team for the next several weeks.

As the day passed on, I remembered Ethan mentioning that there is a spot on his thigh that is numb that we never addressed at rounds. I forgot. We also did a “wait and see” the other day.  Wait and see if it goes away over the next couple of days approach. Paul texted Brian and Kristen to ask a nurse the next time they came in. This set Ethan off in an explosive way. He refuses counseling so doesn’t have the most fine tuned coping skills. I will wait as you wipe the shock off your face (sacracstic).

Ethan is still 18. Old enough to fight for our country, but still young enough to not have all of his developed communication skills. Especially since the past 2 years have been a whirl wind of pandemic, home schooling unconsciousness and fighting to get to where he was all while isolated from kids his own age. His peers became his doctors and nurses for many months.

As a great friend pointed out, I am his “safe person”. It makes sense since we have spent a lot of time together dealing with this medical disaster.

Ethan sent me a text that wasn’t very warm and friendly. As I first read it, I was upset. I had a range of emotions as all mothers do when our kid speaks to us in a disrespectful way. I did it to my parents or parent as my dad had passed away by my 18 th birthday. But I did it to my dad as well while he was battling cancer. We all do it to our parents. When you are 18, you know everything and don’t really care about the collateral damage of feelings.

I started to develop my rebuttal. It was not pleasant or kind. I revised it. I revised it again. I revised it several times actually. Texting is great to take a breath and say what you would like to say, minus the hurtful comments. 

Had I sent the raw version, I would have felt better instantly but had deep regret almost immediately. You can’t make words go away. You can apologize for them but the mark they have made, leaves an ugly stain. Nothing removes that stain.

What would Nanny 911 say to me. (Yes, I used to watch that show when my kids were smaller.)

She would say to address the rude comments with “that is unacceptable” she would tell me to set the expectation. “If you respond rudely, I will not continue this conversation” and then follow through on it. hi 👋 

We tell these 18 year olds they need to be responsible and apply for college on their own, manage their own finances. We help along the way. Then when they are in ICU AGAIN after a long and traumatic first go of it (second really he was in ICU for 5 days at 9 months old)…raise your hand if you have been in this situation.

There aren’t many nanny 911 shows on this specific subject. After reading and re-reading his text, it wasn’t me he was really upset with. He felt like he wasn’t being heard, he was scared he was going to have to stay longer in ICU and have many more tests. So I wasn’t necessarily the intended target for the frustration, I was hit because he needed the tools and support to redirect his frustration so that he could take control of it. And the lightbulb went on for me.

Paul was with me through the whole ordeal. He is a little more reactive than I. I like to view it as we have different communication styles. Some people require different styles than others. I was using him as a sounding board. The last thing I wanted was an argument. 

Our text exchange actually turned into this beautiful little empowerment exchange. I was proud of myself for remaining calm. I was proud of him the he recognized his mistake. He apologized for it. He continued the conversation in a calm manner and by the end, he just wanted to come home to the apartment. We decided we will eat snacks and candy and he said we could even look for jelly beans for me. However, I brought a stash of  Swedish Fish. Swedish Fish is the only fish I will ever eat. Seafood ….🤮.

No one has perfect kids. I was disappointed at one point. Control what you are able to and move on. This mentality has helped me so much over the past almost 2 years.

It was frustrating to be blind sided by this anger. Luckily we can adapt and make some adjustments and COMMUNICATE with the staff to move forward. All valuable lessons.

The bright spot of the day was that even with my cautious warnings, one of the members of our family unit got caught by the frustration of the Sabbath elevator……that stops on every. Single. Floor. Ugh!

And to close the evening, Ethan FINALLY graduated to the regular floor. 4 Tower room 414. He is officially out of the ICU.