3/19

Ethan had a rough start to his day this morning. He was homesick and tired of being here. He was also nauseous and it was important to him go to class because he had missed the past two days. He was able to attend class with his bucket close by. Luckily he didn’t need it.

After class, he was feeling pretty low. This week he has been hard. The fistula took longer than expected, he missed a dose of methadone. That has caused him to withdraw and wretch, have tremors amongst other unfavorable side effects.  He is back tethered to a pole. He can’t use his left arm due to the surgery. He had his fluids restricted even more. He hasn’t been getting good sleep because they are doing blood draws on him every 4 hours to regulate his anticoagulant.  He feels like crap and misses home. Other than those few minor things....his day was fine. (Sarcasm)

His OT ground angel came to the rescue and cheered him up at just the perfect time. She saw him struggling to maintain his composure. She sprinkled her magic all over him. They had a good OT session.

He also participated in a psych session. I am not sure he knew what was going on, but he participated. The man from Psych gave me a thumbs up at the end. I had to “get myself something to eat” in the cafe to remove myself from the session and hope for the best.  Ethan is not really a “talk about your feelings” kind of guy.  He is an introvert. In true introvert fashion, feelings are sacred. You don’t just share them with anyone.

We did get some news. We got word that there might be a bed available on Thursday next week in rehab. So that is our target discharge date. We have made it almost to the middle of the marathon. I have got to get this kid out of here before he loses his mind.

I met with the cardiac pharmacy team to go over all the medications we will be sent home with, learn about the side effects and that life after transplant has a whole new set of rules for things like, if Ethan has a headache. Everything is a sign of rejection but could be something else too. We are to always call NYC if there is anything medically going on with Ethan. THEN, they will decide if they need to see him or where we should go for help (pediatrician or emergency room).

I have a good handle on all of the medications we are being sent with. I feel confident about what they are given for, how often as well as side effects.

I met with the endocrinology team to discuss the growth on Ethan’s pituitary gland. They have done a full work up and have ruled out several  diseases that it could cause which is great.  He still has a thyroid issue and is now getting medication twice a day. He does have some elevated values that need further investigation with blood tests in the next couple of months.

Ethan will also get another follow up to see if the cyst has grown or not in about 6 months. If he starts having chronic headaches or loss of vision we will be going sooner.

As the day went on I was sad because Ethan was sad. I ran upstairs to Ethan’s favorite nurse and begged her to come see him before she left. I really didn’t give her a choice. I presented myself to her as one desprite mom I couldn’t even hold back tears. “Please.” I begged.

The worst part was, I knew it would keep her away from her 2 children. I knew the pain of staying late on a shift where you hustled your butt off all day.  Her time is precious to her family. She came to the rescue and really gave him a great pep talk. Those moments were priceless. She cradled his face and told him how proud she was of him. How he was a miracle kid. She refers to him as her “son”. He hugged her and really needed that visit. He needed that hug. He needed to tell her why everything sucks. The home time she gave up was so valuable to us. How do you ever repay someone for that? You don’t. I can only hope some day I will be able to help someone in this capacity.

The rest of the evening was spent with Ethan either wretching or dozing off. Withdrawl sucks. What a long damn process.

Ethan and I looked on the bright side today. We are on the home stretch. The tethered pole will only be for a few days. All the extra pokes, I talked to the team about and they are willing to skip a few as well as let him sleep at night. I worked it out with his attending doctor to stay on top of the nausea and give him medicines around the clock before the nausea hits. We are skipping a vitals check in the middle of the night. This weekend might suck, but we will go outside. All of these things will help. We are moving out of this place very soon. We will be on to the next chapter. I am hoping it is a short one.