I got a very sad phone call that Daniel, a heart buddy, will be withdrawn from life-support this evening. I've mentioned Daniel in a few other posts...he's 2 days older than Maddie, has HLHS and they shared an ICU room their first week of life as well as after their first surgeries. They don't have a blog or carepage so we've kept in touch a little through email and when we've been over in Seattle for appointments. He had a heart transplant about a month ago and had a difficult time, he'd been on ECMO, came off of it, and he was just starting to rally. I visited with Leah (Joshua's mom) this afternoon and she said that Daniel and his parents had a great day together yesterday. Unfortunately, he coded this morning and too much damage was done, so he is on ECMO again until all of the family arrives to say their goodbyes. Please pray for his parents, Heather and Mark. Daniel never left the hospital due to his broken heart, but he will finally be HOME now... God bless you sweet boy, we won't ever forget you.
HEART CATH CANCELLED
Also, Maddie's cath has been cancelled...it was supposed to be tomorrow morning at 7:15 but she was warm and cranky after lunch time so I took her temp and low and behold, she's funning a fever of 102! Came on quick. So, it's now rescheduled for April 22nd. Her fever has come down with Tylenol but she's just not herself. It's best to wait and get everyone healthy before her procedure...we're sick of being sick around here! But it's nothing in comparison to what others are going through- our hearts go out to those families.
13 comments:
I am so sad to hear about Daniel, him and Sophia were roommates once she had her procedures and was sent to the CICU. I will be praying for them tonight.
And we may see you in April, we still don't know when we are going, but looks more like April.
I am so sorry I love you
Feel better soon Maddie, Katie so sorry to hear of another hard loss.
It really breaks your heart. I hope Maddie feels better soon. We're sick of the sickies too!
YOU DONT KNOW ME, BUT I TO HAVE A SON WITH HEART PROBLEMS, ITS WIERD HOW YOU JUST FEEL CLOSE TO SOMEONE YOU HAVE NEVER MET, BECAUSE WE HAVE GONE THROUGH ALL THERE SURGERIES ALSO. WE LIVE IN UTAH WHICH ALSO HAS A GREAT CHILDRENS HOSPITAL. mY SON HAYDEN JUST CELEBRATED HIS 8TH BDAY, HE HAS TRICUSPID ATRESIA AND A FEW OTHER DEFECTS. HE WAS LIFE FLIGHTED AND HAD THE BT SHUNT DONE AT A MONTH OLD, GLENN PROCEDURE AT 7 MONTHS AND MADE IT TO 7 YEARS OLD BEFORE WE HAD TO DO THE FONTAN. HE JUST HAD THAT DONE IN NOV.08. TRULY AN AMAZING SURGERY, HAYDEN IS A WHOLE DIFFRENT KID, KIND OF A NORMAL KID NOW,YEAH. RUNNING, PLAYING BASEBALL, SKATEBOARDIN, RIDING BIKES ETC. IT IS TRULY AMAZING WHAT THEY CAN DO TO THESE LITTLE KIDS HEARTS. THANKS FOR YOUR SWEET BLOG AND ALLOWING OTHERS TO VIEW. HOPE ALL TURNS OUT FOR YOUR LITTLE ONE. LORI JONES
Katie~ So sorry to hear about Daniel, I'll definatley pray for their family tonight! And sorry to hear Maddie is still feeling yucky...poor girl. Praying she'll feel better soon:) Love, Krista
I've read about Daniel on yoru blog and also Joshuas. Sounds like both boys have had a LONG stay and difficult time with surgeries and transplants. My heart goes out to Daniels' family.
I'm sorry Maddie isn't feeling well. What a smart cookie though... she knows how to get out of an icky cath! :)
Katie, I am so sorry to hear that Maddie is running a fever! I know you would have liked to get that cath out of the way! I will definitely be praying for healthy kids! My hope is that spring will help get rid of all of these awful sicknesses going around. Hang in there!
I know that the hearts of Daniel's parents must be so heavy. We can't begin to understand these things! But I know we need to trust God.
I hope Maddie's fever is down today and that she is on the mend!
Oh, Katie. Another loss of a precious heart baby. It is so devastating to us who love these kids, I can't even imagine what Daniel's parents are going through today. You are such a good friend, and I know that Leah's burden is a little lighter because of people like you.
Luke is still sick, too, and I cannot WAIT for the warm weather to dry up all these sicky germs. We are around on April 22nd, so I'd still love to plan on coming up to children's before/during/ or after the cath, whichever works best for you and Maddie. Feel better soon, Madds!
Jesse
Please know that my heart aches for Daniel's family. With these baby's not doing well with thier transplants, I'm officially in freak out mode. But with that said, I also know that God has different plans for different people and have accepted that. I pray that his family find peace in that he is home now and is a very healthy little boy! Love to you and Maddie!
Love, Suzie
Katie, Hope Maddie starts to feel better. I truely hate reading that another one of these sweet babies didn't make it. It breaks my heart all over again. I brings up so many emotions that I have tried to turn off. If you want to give this family my phone # you can. If they want to talk. Ive kind of been through the same thing in a sence. I will never get used to seeing that another baby didn't make it. Especially after getting a heart. I will be praying for Daniels family and yours as always. Love, Tracy Fuhriman
He is such a sweet little guy. I am so sorry to hear of hids families loss. We will keep them in our prayers.
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