December 26- Step Down!

Chris called me this afternoon to report that the last couple of days had been challenging. Heath has had a difficult time withdrawing from the medications. The doctors were trying to wean him off of the necessary pain/sedation meds but felt like the process had gone a little quicker than Heath could handle. So, they have given him a patch and minimal drugs to help him with pain/withdrawal symptoms and things have been much calmer and he has been able to sleep (something that has not come easily for Heath the last couple of nights). He is also quite comfortable on Carrie's lap. So much so Chris is trying to "prop" her up so as not to disturb Heath!

The last couple of days, the doctors/nurses had a difficult time putting in a line (port)for the administration of any necessary drugs (including the antibiotics for the CMV infection) but they were finally successful. As you can see from the picture, the line finally went in on the left side of his neck. They will be testing the port to make sure it is working properly but all seems to be working well.

The Tuttles have enjoyed visits from "Nana" (Carrie's grandmother), Ami and Bob Hill, Uncle Jamie, grandparents Bob and Pat and Genie Martin. The Tuttles were able to spend some time late Christmas Eve with close friends of theirs, the Patty family, who has also experienced a health crisis. The Patty's and Tuttles have been a great source of support for one another.

The 6:00 p.m. update is that Heath has officially moved to the step-down unit!! This is a HUGE step for Heath. Ron Shive (FPC Head of Staff) was visiting with the Tuttles and was able to walk with them to their new room in the step-down unit. GREAT news for Baby Heath (and Mom and Dad). I hope to continue to report more good news in the days to come.

Blessings,

"Gran" Sarah

Christmas Eve

Carrie called this afternoon and was leaving the hospital to take Ella Brooks to the Children's Service at Westminster! They were looking forward to some mommy-daughter time.

Carrie reported a quiet day for Heath. He is still in the PICU until the doctors can stabilize Heath's blood pressure. However, the medical team fully expects him to be out of the PICU in a few days. Heath continues to be progressing well.

The Tuttles anticipate a quiet Christmas holiday with family and plan to stay close to the hospital to spend the days with Heath. They continue to be so grateful for Heath's incredible gift!

The Tuttles are very thankful for your prayers and wish everyone a Merry Christmas!

Blessings,
"Gran" Sarah

Even Better Tuesday!

Tuesday was shaping up to be even a better day for Heath. Now that he is in his mommy's lap, Heath has not found the need to express his "opinion" as much-he is a happy camper with no IV's, no O2, great color (sweet pink cheeks!) and big bright brown eyes. Heath was doing well with his occupational and physical therapists. Our Associate Pastor, Dr. Genie Martin, was playing "peep-eye" with him to his delight!

We have so very much to be thankful for.....Hallelujah!

Christmas Blessings,
"Gran" Sarah

No Ventilator - YEAH!!!!

Great news- Heath is off the ventilator! Both the heart cath. and the extubation went very well. The heart cath. "numbers" were very good. A few numbers are not where they want them to be eventually but are right where they are supposed to be at this stage of Heath's healing.

The only pain medication he is on is Tylenol. His lungs were a little "mushy" earlier today, but since Heath has expressed his "opinion" following the heart cath. (a.k.a. crying and mad!) his lungs have cleared beatifully! So, mom and dad are going to be more "hands-on" in the coming days as he adjusts to being awake more and "voicing" his displeasure about the nurses "bothering" him! I never thought a crying, angry baby would be such great news! Especially when this "Gran" used to head straight downstairs to our church daycare if I heard Heath crying! (even though he was in very capable hands- our daycare was VERY patient with this "Gran"!)

Heath's CMV infection continues to improve and he will likely be on medications to control that for a few weeks. He is beginning to make the transition to oral medications rather than IV medications in preparation for going home soon (but Carrie & Chris affirm- not TOO soon!).

The Tuttles continue to be so grateful for your prayers, kind words and tremendous support. We continue to rejoice for Heath's remarkable gift and to pray for his recovery.

Christmas Blessings!

"Gran" Sarah

Good Sunday!

Carrie and Chris had a good day- they were able to hold Heath for the first time in way too long! Carrie's brother, Jamie, took these great pictures today! Heath will have his heart cath. first thing in the morning and then they will extubate him. Once they extubate him, they can begin to wake him up-Heath continues to improve!

I'll update again tomorrow once I speak with Chris or Carrie. Continue to keep Heath in your prayers as he continues to make great progress.

Blessings,

A Very Grateful "Gran" Sarah

Saturday

Carrie called this afternoon to tell me it has been a quiet day. The doctors had planned on extubating him today but decided not to. Heath had been moving around a lot last night and irrated this throat causing some swelling. They are hoping that with some rest today, they will be able to extubate him tomorrow.

The doctors are still planning on performing a heart cath. on Monday. He will have to be intubated again for that so the doctors are making a decision on extubation based on what will be the least invasive and make Heath more comfortable. Heath has developed a CMV (cytomegalovirus) infection (a herpes like virus) that is quite common for most folks. However, since Heath's immune system is suppressed, they are watching the virus closely. All continues to look good for now and this is not an uncommon occurence.

Carrie mentioned that they had received some Christmas cards from some Burlington folks with family pictures enclosed. The pictures made Ella Brooks very happy. She was carrying them around at breakfast this morning announcing the family members in the photo!

Please continue to pray for Heath and the Tuttle family. He has received a miraculous gift but still has a long road ahead.... We continue to rejoice and trust in God's providential care.

Blessings,
"Gran" Sarah

Improving!

I just returned from a lovely visit with Heath and Carrie. As always, Carrie was so incredibly generous with allowing me time with baby Heath! We enjoyed some breakfast together (Carrie's big treat of the day from Biscuitville!) and then enjoyed some time with Heath.

The good news to report today is that his chest tubes and catheter have been removed! His kidney function has improved greatly. The doctors are beginning to wean him off of the stronger sedative medications. Doctors will take a chest x-ray tonight and begin to work on helping his lungs get a little stronger from some normal post-op/ventilator issues. However, they expect he will be off the vent in a couple of days and begin to be more fully awake then. Of course, the more he is awake, the more time he will need constant supervision from family-what a great problem to have!

I also got to see the "beautiful" line down his chest that points to that beating, healthy heart! What a great line that is! As he woke up a little from the sedation today, he opened those big beautiful brown eyes....good medicine for this "gran"!

As I was leaving Duke today, I also saw Carrie's brother Jamie, sister-in-law Sarah and high-school friend Wendy (who surprised Carrie with a visit). Wendy not only surprised Carrie with her visit but with a lovely "gift" from a fundraiser she had organized. Carrie was so grateful and appreciative that Wendy had offered such a heart-felt gift from folks who didn't even know the Tuttles but wanted to help! Christmas miracles abound!

I hope to update more tomorrow. Our head of staff, Dr. Ron Shive, will check in with the Tuttles tomorrow. Until then...

Let us rejoice!
"Gran" Sarah