It's heartbreaking to see how tired Brianna is now. She has been taking cat naps periodically through the day yet when she is awake, she is her usual happy, rolling, sitting up self. Her little body is getting so tired.
We almost got through a night without alarms until 3:04 am....and then today I was on the phone with a long distance dear friend, Martha Bravo (the photograph who has taken the most amazing pics of our family) when Brianna's heart rate spiked to 256. In total shock I hung up on Martha and concentrated on Brianna (with Jerry). It came right down but boy did I feel like I needed a stiff drink after that one!!!
We had a very good visit with our friends Steve, Ibis, Jim, Karen, Vance and Theresa this evening and they brought over a wonderful "comfort food" dinner. Good friends, good food and good times. Thanks to you all!
It's been a very difficult week. Today Jerry had Bri's pediatrician sign the DNR (Do Not Resusitate) form. Learned something new about this. If by chance we were out and Brianna had an episode and an innocent bystander called 911, without us having the original DNR form on us, the EMS would HAVE to do whatever is necessary to keep Brianna alive. We would have no say whatsoever if we did not have the original with us.
I also called the funeral home to arrange for a meeting next week. This stuff is so unbelieveably hard, I guess by blogging about it, it helps me....sounds crazy I know. It is crazy and so very wrong.
Checking in and reminding you that I'm praying for you!
ReplyDeleteMy love and continued prayers that the grace and comfort of the Lord will sustain you - and that His peace will surround and fill precious Brianna and each of you. Carole
ReplyDeleteJust wanted to tell you that even if you sign the DNR you can still change your mind. I did it early for Annabel at the hospital, but I was told by the nurses if I felt someone was letting her go for other reason like infection or something I could still have control. It was helpful for me to know that. I haven't signed another one but I just pray God has control and will take her when her time is here.
ReplyDeleteI am so sorry for all you are going through.
You are in my prayers during this horribly difficult time. May God bless you, and Brianna.
ReplyDeleteIt seems so unfair that you are having to go through such difficult times. My prayers are with you.
ReplyDeleteJill
You all are in our thoughts and prayers.
ReplyDeleteBrenda,
ReplyDeleteJeff and I are keeping you in our thoughts and prayers. I think of Brianna (and all of you) throughout the day. I feel so heartbroken for what you are going through. At the same time, I am so inspired by your courage and faith. I wish I could be in FL to help you out.
Susan
brenda,
ReplyDeleteyou, your family, and most of all brianna are in our thoughts always. we are wishing for smiles and comfort for the lil princess.
I have been following your blog because of my granddaughter, who has Trisomy 21. You are so brave and have done exactly the right things for Brianna throughout her young life. God has guided you so far and will continue to do so. May He continue to comfort Brianna; I know she knows His love through you.
ReplyDeleteP.S. I love all of your music! Never heard this version of Amazing Grace, but it is awesome :)
I remember how Mieko's mom planned her passing like a celebration of her life. There is so much to celebrate of how far Bri has come - i hope this will give you the strength to handle what comes.
ReplyDelete