Because I don't know where to begin. My hiatus is hopefully over, but for tonight just a quick Prince update.
A little more than a year ago, I had met with Eamon's "then" neurologist. She was thorough, really thorough, and tossed on the table the idea of a tracheotomy. The thought brought Mimi to tears, David to outrage at the absurdity of its necessity, and me to a "just-kicked-in-the-stomach" feeling.
I followed-up with the pulmonologist, who settled me with a "We are not there yet, May never be there" response. And so, the idea was put away.
This February, Eamon reached his most heightened respiratory crisis - failure to be exact. The idea of a trach was not only on the table, it was the center piece. The ICU Dr mentioned it after Eamon was intubated, but reserved its full discussion for the next day. Well, the next day came early...he walked in the room about 6am. Eamon's labs were back showing chronic CO2 retention that had reached a fatal level. My breathe catches remembering just how sick our sweet prince was.
A little more than a year ago, I had met with Eamon's "then" neurologist. She was thorough, really thorough, and tossed on the table the idea of a tracheotomy. The thought brought Mimi to tears, David to outrage at the absurdity of its necessity, and me to a "just-kicked-in-the-stomach" feeling.
I followed-up with the pulmonologist, who settled me with a "We are not there yet, May never be there" response. And so, the idea was put away.
This February, Eamon reached his most heightened respiratory crisis - failure to be exact. The idea of a trach was not only on the table, it was the center piece. The ICU Dr mentioned it after Eamon was intubated, but reserved its full discussion for the next day. Well, the next day came early...he walked in the room about 6am. Eamon's labs were back showing chronic CO2 retention that had reached a fatal level. My breathe catches remembering just how sick our sweet prince was.
Ironically the week before the hospitalization, I had gravely discussed the potential need for the trach with Eamon's physical therapist.
And now, we were face-to-face with the decision. Obviously, we chose the trach - a decision that was clear and peace-filled. God had been preparing us.
It has been a long couple of months, lots of ups and downs readjusting to our newest normal , but the trach has brought new life to the prince. He is doing amazingly well! Stronger, more consistently connecting with us, and joy - such joy. There are days, I believe he is trying to get on up and march around the house. He is growing, longer and not leaner, looking more proportioned. His hands are open and reaching, his vision seems more attune, and did I mention the joy. He laughs, belly laughs, smiling most of the day away.
We are so grateful for what the trach has brought to Eamon, the chance to be his best self.
Celebrating at the 4th of July Parade
The state of nursing remains unchanged, but new insurance covering both nursing and equipment is in the works.
Until then, this is the new look of nursing in the Barclay home.
Nurse Maeve, gloved and workin' the stethoscope. Eamon looks concerned.
2 comments:
So precious! I love you! Did you get my messages regarding concert stuff. Also, I need your new number...(you can email that to me)! Send my love to your husband and children!
Ok...do you have a new number? Clearly you don't want me to call. ;)
I'm glad to see I don't have the only daughter that likes to torture her little brother. Liam often has that same terrified look! Ha! LOL
XOXO
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