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 been going on for a while. He gets medication to stimulate the production of red blood cells and continues to teeter on the edge of needing a blood transfusion. Anemia is no joke and makes him tired. He pushes through it way better than I could and gets all of his therapies done even though he is tired.
When we got back from 4 hours of dialysis Ethan’s dinner was waiting for him. When he lifted the lid of the hot plate at 7:00 at night after the kitchen is closed and saw this.
Are you kidding me? The kitchen goofed up his order and didn’t bring everything. He was so looking forward to eating. This was basically devastating. It seems they marked his as being on a low sodium diet. While he does have a new heart and we don’t want to go over board, our restrictions are phosphorus and potassium right now. This meal is sub par for an 18 year old. A call was put in to a supervisor and I will be meeting with them in the morning.
We had multiple bright spots today. My critical case manager was my savior today. I am going to try and be social tomorrow for the “new parent mixer”without alcohol. I am already dreading this “social” occasion. Wish me luck. Any bets on if I go vs. backing out last minute? I won’t even know until tomorrow....
Lots of Bright Spots today. That dinner wasn't one of them but hopefully it will be better tomorrow. As far as the New Parent Mixer is concerned, you always tell Ethan..
ReplyDelete"You WILL go and You WILL BE nice!!!" Good Luck... We love you Both!
The difference between those 2 pictures is amazing. His face is fuller, meaning a healthy look and color. That’s a bummer about his dinner, don’t worry Ethan...Mom will have that all fixed up for tomorrow.
ReplyDeleteJust go to the New Parent Mixer, it will do you good to “step away” for a bit. After that you can decide to go or not.
Sleep well.
The 2 different pictures of Ethan makes my heart both hurt and happy. To say that he was so critical just a short time ago is an understatement. To think that he has come so far in such a short time is crazy and amazing! So proud of you both for working so hard.
ReplyDeleteAnd yeah, that dinner looks pretty sucky. But there could be worse things. Like Limburger cheese.
Ethan, YOU LOOK AMAZING! Before you know it, you will be heading home!
ReplyDeleteLook at how far you have come.....you are heading towards the finish line! Chin up, kiddo!
Patti, please continue to kick some insurance company ass. :) Fight.
So amazed at Ethans progress and what an incredible change over the past few weeks. Looking so healthy and strong, and back to himself. If I could, I’d bring down a garbage plate. I’m sure that would fulfill all the dietary needs, and then some. Keep on keeping on my man!!
ReplyDeleteEthan looks so much better! That dinner though.. 🥺
ReplyDeleteI totally hear you about the mixer, that's the sort of thing that would have my stomach in knots. But every one loves you, it will be fine!
Wow. Those two pictures put so much in perspective! Unbelievable progress. Ethan- you look incredible in that last picture. I can only imagine how very badly you want to go home. There's truly no place like home and home is going to be so much sweeter after this experience. Patti- I'm proud of you for considering going to that mixer. Why not? You know you're going to get some funny stories out of it. Just smile and observe... there's no harm in not chatting it up with everybody. Just sit back and watch the people "theater" begin. xoxo
ReplyDeleteOmg! WOW, the difference is incredible between those two pics. Ethan looks amazing, like himself and so much healthier now.
ReplyDeleteI find it so funny you are so anti social, Patti. I mean you are such a ball buster and story teller that no one would ever know...I didn’t! And I must drive you absolutely crazy with all my writing / texting and talking while camping. I’m sorry for my big long winded mouth. I’m hoping it will pay off though someday with my books. LOL!!! Sneak something into an insulated cup, you’ll be fine. ;)
Hope dietary doesn’t serve him something like that again, I’m sure you will straighten them out. I think he deserves pizza tonight for dinner. You guys are almost there...he won’t be homesick much longer. 🍕🙏💚