Settling In to Being Home

The Tuttles are settling in to their new routine and being at home. Carrie reports that Heath is thrilled to be home! Ella Brooks is pretty happy to have everyone home too! Heath had a good first night but was a bit fussy last night. They think the medicine might be upsetting his tummy. Administering the meds through the port has gone very well and Chris and Carrie have gotten used to their new "nursing" duties! Heath has enjoyed some special time with his Granpa Bob too!

Ella Brooks was going to enjoy a treat of having a sleep over with "Oma" (Carrie's mom) tonight. Seems she has a bit of pink-eye that she doesn't want to share with her brother so is enjoying a little one-on-one time with Oma and Grandpa Strow.

The Tuttles are anticipating the home health nurse to check in with them tomorrow. They were pleasantly surprised when their insurance case manager called them to see how they were doing! Thursday they go to the doctor for a follow up visit. I expect to have more info after Heath's appointment.

Heath is still scheduled for his routine heart cath. on Thursday, January 22. He is doing so well the doctors don't want to upset the regular routine tests that continue to check on his progress.

Keep the Tuttles in your prayers as they continue to adjust to their new "normal".

Blessings,
"Gran" Sarah

Homecoming!

Chris sent me an email with the following good news!

"The first one (picture) is our new friend Dr. Ira Cheifetz. He is the chief of Pediatric Critical Care Medicine at Duke, and was the attending physician both when Heath crashed (back on dec 3), and when we moved to step-down the day after Christmas. He has stayed in good touch and, while I am sure he would hate this attention, we wanted folks to know that this good man has a lot to do with heath being alive. Yeah Ira!

The second (picture) is an action photo of me putting Heath in the car. Carrie wanted you to be sure to add that Ira, while great, doesn't deserve all the credit. He is a stand-in for the cardiology team and all the staff, especially the nurses, in the PICU.

One photo is us on the porch of our house...with sign, up above, made by Carrie's mom, with help from eb. Second is cute baby heath, happy to be home, mooey on his head. "

I think I will let the pictures and Chris & Carrie's words do all the talking....

Blessings, "Gran" Sarah

There's no place like HOME!!!!

Heath is home! I received a text from Chris this afternoon about 4:00- Heath is home!! This is a picture from Granpa Bob's Facebook page right before Baby Heath was ready to go home. Doesn't that smile say it all? Did I mention that Heath is home!!

I know the family is enjoying their evening together so I am not going to intrude. I will update more later when I speak to them.

He's home, he's home, he's home....

Blessings, "Gran" Sarah

Friday....HOME tomorrow!

I spoke with Carrie this afternoon and the plan is still for Heath to go HOME tomorrow-amazing....don't you think??!! Heath is going home with about 9 medications and a port that will likely remain long term (not short term as I had previously thought). They can access is for some time to come so they don't have to stick our sweet baby so much! Carrie went to "nursing" school today to learn how to take care of all the details! Heath continued to charm the doctors and nurses with playing peek-a-boo all by himself with his blankie! Awesome progress!

Another exciting bit of news that left the Tuttles speachless was a surprise fund-raiser lunch at Montreat. The staff at Montreat surprised Grandparents Bob and Pat with a lovely lunch to help Baby Heath. God is Good Montreat.....All the time!!!! Thank you so much. In light of the cost of medications, the gift will truly be a welcome help.

That's all for now....I am already practicing the words....."Welcome Home Sweet Baby Heath"!!!!!

Blessings,
"Gran" Sarah

Thursday- Mission Accomplished!

A brief text from Carrie reported that Heath had his port surgically placed this morning and all went very well. However, Heath was a very fussy boy after the procedure. I can't blame him!

The hope is still to head home Saturday..."step-by-step" as Carrie said!

Blessings,
"Gran Sarah"

Tuesday- A Tiny Step Back

Carrie reported another good day for Heath but the CMV numbers indicate a need to have a port put in his chest (for IV meds at home) before he goes is released. So, Heath is scheduled for surgery Thursday and it will be at least two days after surgery before he will be allowed to go home. The doctors want to get Heath home but just not too soon. They expect Heath to have the port approximately two weeks, so this is not a long term need.

On a brighter note, Carrie tells me that Mr. Heath has been dancing for the nurses. Everytime music plays, he begins to dance! He is quite the popular little guy with his new "show" for the nurses. He also sat up by himself for the first time today-more great progress! He continues to eat well and interact well. He is completely off the medications he was on for withdrawal symptoms, so he is literally ready to "rock and roll"- what great news!

The doctors are very pleased with Heath's progress as he continues to exceed expectations. Once his port is in, they hope to have Heath home soon. Of course he will go home with visits from occupational, speech and physical therapists to help him "catch up" a little but the medical team does not feel like he will need their services long because he is progressing so quickly. Heath will also require some home health care for a time. However, all the good news still gives the Tuttles the wonderful gift of looking forward.

I almost hesitated to write another update because I wanted those wonderful pictures of Heath to remain the "headline". However, reason won over a proud "Gran"-well, just for a moment!

Thanks for your continued prayers and encouragement for the Tuttle family.

Blessings,
"Gran" Sarah

Monday's Perfect Pictures

Wow- is that a beatiful face or what?!

Chris emailed me today with these great pictures and a good report that Heath is doing really well. The picture on the right was taken today (Monday) sometime. His scar is prominently displayed, and there is an IV in his left arm. The bandaid on his right is where they drew blood - they have to do that each day to keep an eye on a particular blood level - and the gauze on his neck is from the (healing) site into which the ECMO tubes were attached. Other scars on his chest are holes into which pacing wires were inserted (pretransplant) and where drainage tubes came out - so fluid didn't build up immediately post-surgery. The picture on the left, with the mohawk, was taken yesterday. (Notice the "drum action" with the plastic syringes-his new favorite toys!)

I will let the pictures do the rest of the talking...

A Grateful and Smiling,

"Gran" Sarah