I called Carrie this afternoon and had a great conversation with her on how the Tuttles are doing- in a word GREAT! She has had the luxury of some time to unpack some boxes in the garage while Heath takes his morning nap. Ella Brooks is enjoying some time with "Ama" at school but especially enjoys having her baby brother home. At one point, Ella Brooks asked her "Ama", "Just what have Mommy and Daddy done with Baby Heath?"! Now she doesn't have to wonder any more-he is home and happy!
Heath continues to feel good and progress quite well. Currently his counts are a wonderful "zero" for the CMV infection. He is only receiving infusions for the port-related infection. Heath's counts for all his immuno-suppression meds are right on target. He goes back on Monday for his scheduled heart cath. They will stay in the hospital through Wednesday to complete the current course of antibiotics and check all his levels prior to going home.
Carrie and Chris continue to be so grateful to their parents for their tremendous help and support. Chris's parents have faithfully traveled back and forth from Black Mountain to help with the house, the children, hospital stays, etc. Carrie's parents have likewise been so supportive and feel fortunate to live nearby to help in so many ways. Their families have been remarkable in their willingness to do "whatever it takes" in the midst of jobs, school and their own responsibilities to help Chris and Carrie find their way in their new routines.
For now, the Tuttles are enjoying some time to settle in and just "be" as Carrie says! I expect more updates at the beginning of the week once Heath has his cath.
With continued gratefulness,
"Gran" Sarah
Friday, January 23, 2009
Sunday, January 18, 2009
Pictures of the Birthday Boy and an Update
A great update from Carrie...
"Not sure if these will upload with so many. There are a couple of our last day at the hospital and a couple of the birthday boy eating his first cupcake. Dr. Kantor is in one--the cardiologist who had a big part in saving Heath's life on that dreaded Wednesday that he went on ECMO. Another is Brian, one of the respiratory therapists who we became so close to during our stint on ECMO. We had so many great visits from our friends from the PICU that we decided to take a little spin in a wagon before we left the other day. Those folks feel like family to us. I thought you might get a kick out of the picture of Heath working his own iv machine. He was there for so long that he not only picked up a "thing" for syringes but also for all the other medical stuff that is there. I think that my mom and i were getting a little giddy that day...you have to find humor in the hospital, as much as you can.
One of the families that we got to know so well lost their baby on Friday. The service was today. My mom was able to go to support them but we were unable due to some of Heath's care. Please ask everyone to pray for those families who are dealing with loss and continue to worry for their children's health. I didn't realize until this happened to us how much we take for granted our healthy children.
We are enjoying being home. Heath is watching football with daddy right now, and he enjoyed his cupcake and seeing his beloved big sister. Ella Brooks and I (with a little help from Ama) made some delicious chocolate cupcakes with purple icing with green polka dots (guess who chose the color scheme?). He even got a really nice nap on Papa during his infusions this afternoon in his new rocking chair.
We are continuing to learn how to manage TONS of meds and the infusions that we have to do 4 times a day for the next 10 days. It was easier to rise at 2 am to do this last night since i knew that a.we were home and heath is doing well and b. we are not going to do infusions forever (although I am becoming a pro!!). Everything is relative."
Grateful for this special birthday,
"Gran" Sarah
Happy Birthday Baby Heath!
Happy 1st Birthday Baby Heath!
Wishing Baby Heath a wonderful, healthy, happy 1st Birthday. We love you and
your terrific big sister, Ella Brooks!
Birthday Blessings!
"Gran" Sarah
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