Wednesday, February 25, 2009

Short Breaths

Henry's breathing began to be more rapid and labored last evening. His throat and chest have a rattle now when he breathes. Sometimes he has the strength and awareness to clear it, but that is now infrequent.

We called the hospice nurse to visit. This is new and we wanted to make sure we are doing all we can at each moment to ensure his comfort. We all agreed that he seems comfortable for now and she advised us on measures to take should that change.

Each step right now is confusing, difficult and painful. We're in the akward position of wanting more of Henry but not wanting him to have to endure this for long. I remind myself we could rely on the hospital to help us through this, but to have him at home now has been so important to us all.

25 comments:

Anonymous said...

Henry is an amazing little boy. So polite and just so lovable. I am so grateful that I was able to spend time with him and your family
yesterday. Your love for him and each other has taught so many so much. Thinking of you always.

Love,
Shanda

Anonymous said...

What a beautiful gift for Henry to be at home, surrounded by his loving family.
Your blogging family surrounds you with caring. If any of us could lighten your sorrow, we would readily do that.
nk

Anonymous said...

Strength and courage has given your family the grace to endure this.

Many, many blessings and prayers.

Anonymous said...

I am so sorry you have to go through this. There are so many people out here praying for all of you, not just your family and friends, but the hundreds of people who have come to your blog through these people and prayer chains. We all wish we could make this better for you and we are thinking of you constantly as you go through this unimaginable time.

Anonymous said...

Your care for Henry and his comfort is a profound form of love. I am glad hospice is there for you. Thank you for sharing this precious time. My family is thinking of yours and wishing you all peace.

Anonymous said...

Our thoughts and prayers are always with you.

Laura

femail doc said...

Oh my. I read this post with a catch in my throat; this mom will carry you all in my thoughts as you surround your precious boy with love.

Jenn said...

I am sure Heaven is in a frantic state, getting ready for the army of angels to bring Henry home.

The sorrow felt here is mirrored by the joy in Heaven. Henry is adored here and adored there. He is in a win-win situation.

May God guide the angels and make Henry's journey a vacation full of wonder, excitement and laughter.

Jenn Noland

Anonymous said...

Your family is so strong Henry is so lucky to have you guys. Our prayers and thoughts are with you every minute of every day. God bless.
Laura

J said...

Just recently I learned about Henry, his struggle and the gift of love he's shared with everyone. He has touched my family in a way that I can't explain.

From your pictures and comments, its clear to me that we live quite close (my son was a patient of Dr Carson). If there are any things at all a compassionate stranger can help with, please never hesitate to ask. Something as simple as delivering groceries to your doorstep is no problem.

J

Anonymous said...

Your family is so strong Henry is lucky to have you guys. Our thoughts and prayers are with you every minute of every day. God bless
Laura

Anonymous said...

Your family has been truly blessed
to have Henry in your lives. Many people have given him a lifetime of love, comfort and peace during his illness, especially his family.

Anonymous said...

Today, in Andover, Ks there are people praying for you and your family. Little Henry has taught others so much and touched so many lives. Even those who have not had the priviledge of meeting him.
May the Lord bless you and your family and may you and little Henry find peace.

Carol Herrmann said...

Bryan and Tara,

You don't know me, my beautiful daughter Caroline was also treated at JHH for a brain tumor, she passed away on December 9, 2008. I wanted to tell you that I am so sorry for all that you are going through, I know your excruciating pain. Henry is a beautiful little boy, and it is so clear how much you love him.

I am praying for you, and your girls and for your strength and faith to help you through this. I know that Henry is going straight to Heaven, where God is waiting with open arms.

Carol Herrmann

ArkieRN said...

My heart goes out to you. I cannot imagine what your family is going through but my thoughts and prayers continue to be with you.

Anonymous said...

Love you all SO MUCH... you are in my thoughts non-stop.

Henry is my hero.

xoxoox Gwen & the gang

Anonymous said...

I am so happy to hear that the Hospice nurse was there to visit. Hospice is a wonderful help in times like this and the people give so much support. I am sure you are better satisfied having Henry at home; he's in his own surroundings with his family around him all the time, and not in the sterile environment of the hospital. My prayers continue for the entire family during this trying time.

Love,
A Friend From Frederick

rlbates said...

Peace.

Anonymous said...

God Bless you all!

Anonymous said...

Henry, you will always be my hero.

Anonymous said...

Your family is special - peace to all during this difficult time.
Hugs
Linda and Val

Hillbilly Fairy said...

As if earth could not keep too long from Heaven
A treasure this unique loaned by the gods,
A being so rare, of so divine a make!

Hillbilly Fairy said...

As if earth could not keep too long from Heaven
A treasure this unique loaned by the gods,
A being so rare, of so divine a make!

Anonymous said...

We are so sorry you have to endure this painful journey. We are wrapping your family in a blanket of love. It is wonderful that Henry is able to remain at home surrounded by those he loves in a familiar environment.

Much love,
Wayne, Shirley, Fiona, and Angel Sophia

Anonymous said...

While we cannot imagine the emotions you must be feeling, please remember that our thougths & prayers are with you. Henry was so lucky to have such an amazing family. Steve & I have learned so much from all of you. God has made a special place in heaven for Henry. May God wrap each of you in his love & protection.
Love Michele, Steve, Madeline & Carlin