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"
Thursday, January 8, 2009
Tuesday, January 6, 2009
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
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, January 5, 2009
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...
I will let the pictures do the rest of the talking...
A Grateful and Smiling,
"Gran" Sarah
Saturday, January 3, 2009
Saturday's Good News
HEATH called me this evening!! He was on Carrie's lap watching the NC State basketball game and he decided to call his "Gran Sarah". He even talked to me a little bit before a giggling Carrie took the phone. She said Heath loves to play with her phone and the next thing she knew the phone said, "Connected to Sarah Christie". What a great way to receive good news!
Heath had another good day. He had just finished another bottle and had a jar of applesauce. Heath was flirting with the nurses and had lots of smiles! He no longer has a pic line! The only "connections" he has are his heart monitor leads and the O2 meter on his toe! Wow!
Chris stayed with him last night, which unfortunately proved to be a restless night due to Heath's pic line moving around and setting off alarms. However, Carrie is going to stay with Heath tonight and most of the day tomorrow. Grandma Pat is going to have some Heath time this evening and give Carrie a dinner break.
Carrie's mom and brother got lots of things done for Carrie at her house today. Christmas decorations are put away, laundry is done and the house is cleaned. What a gift!
Carrie had some wonderful time with Ella Brooks today as they joined Aunt Sarah for a girls lunch. Good medicine for everyone.
Carrie hopes to send me some recent pictures of Heath. I look forward to posting those and continuing to report good news!
With continued gratefulness,
"Gran" Sarah
Heath had another good day. He had just finished another bottle and had a jar of applesauce. Heath was flirting with the nurses and had lots of smiles! He no longer has a pic line! The only "connections" he has are his heart monitor leads and the O2 meter on his toe! Wow!
Chris stayed with him last night, which unfortunately proved to be a restless night due to Heath's pic line moving around and setting off alarms. However, Carrie is going to stay with Heath tonight and most of the day tomorrow. Grandma Pat is going to have some Heath time this evening and give Carrie a dinner break.
Carrie's mom and brother got lots of things done for Carrie at her house today. Christmas decorations are put away, laundry is done and the house is cleaned. What a gift!
Carrie had some wonderful time with Ella Brooks today as they joined Aunt Sarah for a girls lunch. Good medicine for everyone.
Carrie hopes to send me some recent pictures of Heath. I look forward to posting those and continuing to report good news!
With continued gratefulness,
"Gran" Sarah
Friday, January 2, 2009
More Good News
Carrie sent me a text today with more good news....Heath was able to drink from a bottle today! This news is HUGE in his preparation for going home. They seem to think that Heath will not go home before Tuesday but his progress is going quite well. Heath was also "smiley" today-always good medicine for Heath and the Tuttle clan!
I hope to continue to report good news as Heath continues to improve.
Blessings, "Gran" Sarah
I hope to continue to report good news as Heath continues to improve.
Blessings, "Gran" Sarah
Thursday, January 1, 2009
Late update from Carrie
Carrie sent me a text with an update about their PICU neighbor. She stopped by the PICU as she was leaving the hospital and discoverd the baby girl is in surgery and currently waiting on the heart to arrive that she so desperately needs! Another miracle! She and Heath are only 4 days apart in age and the Tuttles have spent much time with her family in the waiting room. Carrie said that Duke will have done 3 pediatric heart transplants in 4 weeks when her surgery is complete!
Carrie asked again for folks to please pray for this family and baby girl receiving the heart as well as the donor family. As Carrie said, "we have come oh so close to imagining the grief that they are experiencing right now."
Carrie is waiting for Ella Brooks to come home with Uncle Jamie from her wonderful New Year's visit at Ama and Grandp Strow's house. She had a fabulous New Year's visit (and sleepover) with her cousins and family. She is doing remarkably well.
Carrie closed with this comment: "We are unbelievably grateful for our familes and friends who have made this journey with us. And, we are grateful for the prayers and support from people all over the country, and even the world. New Year's blessings to you all. Love, Carrie"
Blessings, "Gran" Sarah
Carrie asked again for folks to please pray for this family and baby girl receiving the heart as well as the donor family. As Carrie said, "we have come oh so close to imagining the grief that they are experiencing right now."
Carrie is waiting for Ella Brooks to come home with Uncle Jamie from her wonderful New Year's visit at Ama and Grandp Strow's house. She had a fabulous New Year's visit (and sleepover) with her cousins and family. She is doing remarkably well.
Carrie closed with this comment: "We are unbelievably grateful for our familes and friends who have made this journey with us. And, we are grateful for the prayers and support from people all over the country, and even the world. New Year's blessings to you all. Love, Carrie"
Blessings, "Gran" Sarah
New Year's Day
Carrie called this afternoon for another good update. She reported that Heath had eaten another jar and 1/2 of baby food yesterday! The therapists were thrilled and surprised! Heath did not try a bottle today but will likely wait until tomorrow when the occupational therapist can come by and be present. All in all, he continues to do well. The doctors would love to send Heath home without a feeding tube and it looks like Heath agrees! Carrie even said Heath is giving out a few more smiles- always good!
Carrie and Chris were going to enjoy some dinner together with Heath in his room. Ella Brooks was going to enjoy an evening with "Ama" (Carrie's mom) and Grandpa Strow. Chris took the "day shift" today and Carrie was able to go home and get a few things done and catch her breath!
Carrie did request prayers for the family of the baby next to the Tuttles when they were in the PICU. They have been through this journey hand-in-hand with this family and they continue to hope and pray for a good outcome for this baby as well.
Baby Heath continues to make progress and ring in 2009 with a determination to get better every day! I hope to update more tomorrow!
New Year's Blessings!
"Gran" Sarah
Carrie and Chris were going to enjoy some dinner together with Heath in his room. Ella Brooks was going to enjoy an evening with "Ama" (Carrie's mom) and Grandpa Strow. Chris took the "day shift" today and Carrie was able to go home and get a few things done and catch her breath!
Carrie did request prayers for the family of the baby next to the Tuttles when they were in the PICU. They have been through this journey hand-in-hand with this family and they continue to hope and pray for a good outcome for this baby as well.
Baby Heath continues to make progress and ring in 2009 with a determination to get better every day! I hope to update more tomorrow!
New Year's Blessings!
"Gran" Sarah
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