Ethan’s Journey

Ethan has a busy schedule today (everyday). He was up, ate, blood draw, dressed, and off he went to OT. I am not sure how we are going to factor tutoring into this schedule. He had recorded himself last night to prepare for him to upload a YouTube video. WiFi was proving to be a bit of an obstacle (which will make schooling an issue). He started to upload his video and had to go to rec therapy.  I started laundry which is in the basement. I walked by where he was and saw him playing air hockey. What a great idea. It is really cool to see how far he has come from where he was. His video had uploaded by the time he got back. If you would like to watch it please visit:  https://youtu.be/ml_abwnMdLY On our video visit with Ethan’s cardiologist yesterday, I shared that one day earlier in the week, Ethan urinated 100 ml’s. Still not a lot, or anywhere near normal, but it is still trying. She was very pleased. We will see what happens from here. He is now technically in Chronic Kidney Failure

I woke Ethan up this morning at 9:00 am. He slowly sat up and I heated up his breakfast of waffles, sausage and bacon on the supposed “sodium restriction” diet. This makes no sense. Whatever, I am meeting with the nutritionist today.  Ethan then got a spontaneous bloody nose. He was pissed. He gets these from time to time. I am a bit more concerned since he is anemic AND on blood thinners. It took about 30 minutes to resolve. I ended up having to reheat his breakfast. By 10:00, he was still eating breakfast with a full day of therapy ahead of him. Our family meeting started at 10:00 am. We had the “family” meeting in the room so Ethan could finish eating.  Ethan was called, for the first time, “not that medically complicated”. I laughed. NO ONE has EVER said that.  What they meant was that in a rehab facility, his issues aren’t nearly as bad as the other kids. Most kids are unable to walk. Wheel chairs are the norm. We were given a time frame of being here about a month. Woo hoo. This

Today has been a busy day. Ethan woke up and was immediately home sick. He misses everyone and he was bummed. There really isn’t much I can say to make that better so I feel helpless. He ate all of his breakfast. I spent about an hour and a half on the phone with insurance today. I have a critical case manager to help me. Thank god for her. There was no way I could have navigated the issues without her.  Dialysis noticed that he has gained 11 pounds since a week ago. They asked if he was eating ok. I know most of that is likely fluid as they didn’t take as much off as much fluid on Monday as they normally do. But I can’t help think that with his hearty appetite and PT/OT, he has gained a bit of muscle and weight. Everyday he is looking stronger and stronger. I looked back at his progress today. I have a picture from January 17 th (1month after his 2 nd cardiac arrest) and today, 2 1/2 months later. The difference is amazing. Ethan has been struggling with anemia. This isn’t new and has

 I was the first one to the shower this morning. These bathrooms are spotless. The toilets are clean, there is no foul odor. It is amazing. I convinced Ethan to allow me to make plans for him to have a tutor. It was more like begging him to release me from being in charge of that. He wanted me to help him and I have proven to be incapable. I excel at other things economics and English just aren’t my forte. I am so glad he agreed to it. He wants to graduate. It’s hard to schedule in time for schooling with PT, OT, dialysis and recreational time while still on sedatives and learning how to do simple things like getting yourself dressed and practicing walking. Everything takes longer. Eating, walking, dressing, bathing....everything. Ethan went to his therapies and did well. I was able to scoot out and accidentally buy 4 bags of jelly beans. Damn it. Why are they so good? My family might say I am a jelly bean addict in the spring, but don’t be fooled, they eat them too. Probably just as m

My phone rings......”hello” I say. How come I always answer the phone like I am asking a question? Upward inflection it’s so weird. However, if I answered it a different way, it may sound aggressive. “Hi this is the kidney donor team calling you about your donor compatibility for Ethan. I immediately felt like I was going over the hill on a rollercoaster. That feeling where your stomach goes into your throat. He kept talking.  I tried to patiently listen but really just wanted to know, Yes or no? Yes or no? Why isn’t he saying if I am a match or not. “How are you today?” He asked. Does he really give a crap? I don’t really care how he is doing. I just want the yes or the no.  “We got the results back on your test and you.....” I felt like I was on Maury Povich finding out the paternity test on one of the 26 guys that could be the father of my baby. “You are a match to Ethan. If the time comes he needs a kidney, further testing will be required but you are a match.”  What a relief! We c

Day two. Ethan is sore from all the walking yesterday. He still managed to dress himself and put his shoes on. He also brushed his own teeth and used the bathroom by himself. This is HUGE progress for both of us. He totally LOVES the food and has eaten everything on his plate for each meal.  His kidney is still trying. He puts out a little bit more urine each day but still is hardly working. Our first dialysis appointment is tomorrow. Our insurance doesn’t cover transportation so I am nervous. I am hoping I can make it work without a hitch. I am putting all my faith in Uber. Ethan has a therapy session today. He is pretty excited about it. Yesterday we had a great conversation about how if you are frustrated, angry or depressed, that your head space becomes cloudy and you lose motivation. Now that he is in a better emotional place, he has been able to focus on a goal and make such huge progress without any therapies but mom’s gentle nudging. Ethan went to the gym today for his physical

 Our ride finally arrived. The one nurse that was coordinating everything for us, man she worked her ass off. She waited for us to leave before she went home. She stayed late for us and I thought that was so above and beyond what was expected. As Ethan was leaving, all of the nurses and doctors gathered around Ethan. They had their bubble maker guns out and started shooting bubbles all over him. How could you not smile? Everyone was clapping and cheering him on. Ethan got to ring the “healing gong”. This is what I call it. When you leave, you get to ring it. Ethan hit it loudly. I looked at him and was thrilled. We are walking out together. He decided he wanted to walk out of the hospital and not ride on the ambulance stretcher that was provided. That was him flipping off his hell.  We made our way to the ambulance loading and unloading dock with our tiny cart and the stretcher loaded with our things. They put the stretcher in the ambulance and Ethan stepped up the big steps and climbe