itisme1109

Sorry everyone for my written absence.

There are so many things that I want to say, but I couldn't find the words, and still can't. Most notably, the fact that Breylon has passed away. He left us on Friday, February 15. It's hard to accept that he isn't here. I am missing him immensely. I think things like what I would give to have 10 more minutes with him, but I realize that that wouldn't change anything. He would still be gone, and I would be left with the same void.

I ask myself, "Does life really mean anything? If so, what? Did his life mean anything? Did his death?" Struggling with meaning and reason for things happening is a common occurrence after loss. I still can't give a definitive answer to those questions. I can only say how I feel about them, and that has nothing to do with reason.

But more importantly, life goes on where you want it to or not, and although it's hard not to get caught up in the what if's of the past and future, I need to focus on what is and not forget what was.

Looking forward to all the moments I'll spend with Brynlee and hoping Breylon's legacy will help.

So everyone, I know you want to know how Breyman is doing, but first I have to throw out some "Shout Outs!" so to speak.

Firstly, go congratulate Caramiriel on his DD! Do it, I know you wanna!

Secondly, AlexanderPaupoff pleasantly surprised me yesterday with this:


Isn't it just lovely? I think so.

Finally,

:thumb284647427:



So.. Yeah. This is hard to write/say, but Breylon is dying. What I mean to say Breylon is going to die soon. In the past week, he had some really rough times. We thought he was getting another infection, but he didn't. His unresponsiveness and things are being triggered by brain deterioration with the stem of his brain. He wakes up some, but sleeps mostly. Last Saturday, he ended up pulling his tube out because of agitation. He was rushed to the hospital via ambulance where PICU team brought him right to surgery to get a new line place. Thankfully, he handle it well, better than expected and was back home that night. They lowered his TPN(his food) to half its original size to help with third spacing (meaning that his blood vessels are leaking.) His kidneys have shut down all together, and he must be cath to make sure the liquid is getting out of his system.

All of this really means, that Breylon isn't going to be with us much longer.

It's happening today in approx. 3.5 hours. Go! Enjoy!

Join in at #ArtistleChat: check for your local time here.

And, Check out: Artistle for more AWESOME-ness.


I know I haven't updated in a while. There isn't much to say. Breylon started a new med to help with the random bleeding, but the med is suppose to be used only for short-term. To help Breylon, he will need to take it over a long period of time, and this will lead to further deterioration of his liver. I know, you may wonder why even give it to him, but it's a choice between what is more immediate. Do we want to wake up one morning and find out Breylon has bleed out in the night? Sometimes, that seems harsh even to me, but it's a choice that they have to face at this point in Breylon's life.

Overall, Breylon has his good days, and his bad days. He struggles with pain sometimes, yet others he smiles and enjoys the people around him.


Recently, Breylon's health as taken some roll-coaster turns. On Thursday night/Friday morning, Breylon started bleeding from his nose, mouth(gums), PICC insertion site, and his stomach and intestines. His hospice doctor, Dr. M, said that this is due to further organ deterioration and failure (kidney & liver, specifically). The options are limited for Breylon, but they are trying to keep him comfortable. The following day, Saturday seemed a little better for him. He was more awake and alert, but Sunday(today) was horrible. He was weak and slept almost all day. He couldn't even sit up by himself. This was alarming, but there isn't much that could be done. Tonight,  he seemed back to himself once he woke up from a long, long nap. He was watching Dora, and wanting to have his feet rubbed.

But tonight may have been good for Brey, it wasn't for Bryn. She has been taken to the hospital tonight. Bryn is Brey's younger sister. She is 11 months old, going to be a year on Jan. 11th, and she is another Mito Warrior. Unlike Breylon, her battle is just beginning. As part of her mito protocol she is being taken to the hospital. She has the flu, vomiting and diarrhea which can cause dehydration. Any stress on her body can cause the mito to progress quicker in her. We don't want that. Hopefully, they will just give her fluids and send her home tonight.


This Christmas, I spent all day over at my sister with Breylon. It was lovely. We opened gifts at 9, and he was happy and excited. Breylon always loved Christmas. He enjoys opening presents. It's wonderful to watch the joy on his face. He actually got up, and walked around for a change, which he hasn't been doing. In fact, he seemed to be stronger than he was over Halloween. He was talking and interacting and it was all together wonderfully exhausting.

Thank you everyone for the pictures/drawings for Breylon. I showed them to him today. He recognized all of them, and love them. www.youtube.com/watch?v=Fv1iKY…
Sorry for the poor quality of the video. Breylon is hard to focus and contain.

Thank you so much for bring joy to my nephew.