An Interesting New Routine!

Here's the latest from Carrie....

"Nothing too exciting going on with us today. We're learning that the "not too exciting" is the best for us these days. Chris and Ella Brooks just went to the Valentine's Dance that is sponsored by the youth of Westminster Pres. They had MUCH fun. Apparently Ella Brooks has no interest in dancing at the dance, but she boogied on the way home telling Chris to "you dance, too, Daddy. Put more hips into it." (mind you, he is driving, she is 3 and very bossy!) That's my girl! Heath got to be my sweet valentine at home.

As I was getting the meds ready while the other members of my house were "dancing," I remembered that I said that I would email you a little description of our medications since folks had been asking questions about how much/when, etc...Heath is a fabulous medicine-taker, by the way. We are extremely grateful because he is on a TON of meds right now. He takes most of them 2 times a day, one 3 times a day and one 4 times a day.

He is on two immune suppressing meds--cellcept and FK506/tacrolimus. These are meds used also for chemo. He will probably be on some form of these two for the rest of his life. Then, he has to take magnesium because the FK leeches magnesium from the body. He is on a heavy duty version of prilosec because all the medications are bad for the tummy. He has 2 blood pressure medications--amlodipine and enalapril. He takes predisolone (steroids), a general sulfa antibiotic, iron, a heavy duty antibiotic called valgancyclovir that is still fighting the cmv (hopefully will go away soon), nystatin (for thrush caused by the antibiotics). I think that is it. I did that by memory. I am not sure if that is fabulous or really sad. :)

Ella Brooks likes to help me get all the medications set out once a day. She likes to line up all the bottles and shake them up for me. For some reason, she calls them "her children" and I have decided not to ask too many questions about that right now. I sent you a picture of us doing the meds together--Ah, mother/daughter bonding. She made up a song about "antlodipine" and the other day we were pretending that we were driving on a trip and first she said we were going to "Sulfatrim (antibiotic)" before going to Haiti to "have a drink" with Uncle Jamie and Australia to see Aunt Deanna and Uncle David. The 3-year-old imagination is amazing to me. Her ability to just add the medications to her life routine is also impressive.

Ok, that is what I've got for you today! Heath doesn't actually have an appointment at Duke again until Thursday, which is his longest stretch so far- step by step! Chris is actually going away on his staff retreat for a couple days at the beginning of the week. Life goes on."

Blessings,

"Gran" Sarah

Thursday Update from Carrie

Here's the latest from the Tuttles...

"The Tuttles are doing fairly well. We have spent the day navigating appointments at the hospital in the midst of the Mix 101.5 Duke Children's Hospital radio-thon right in the clinic lobby. The stories were so moving--and it felt so weird to hear them after all we've been through at Duke.

The sale of our house fell through, unfortunately, with a problem with the buyer's loan. That was sad, but we had some other interest so we're hoping that we'll find another buyer SOON. We had just gotten excited about looking at houses here in Durham!

On a much more fun note, Heath is motoring all around. He is starting to really find his balance and loves to try to walk around the house using only our hands to keep him upright. It is such a joy to watch the smile on his face as he feels independent. I will try to send a picture of this soon. He loves to take a bath--especially if his big sister is in there too. He just loves Ella Brooks. They like to hold hands in the back seat of the car. Once again, the little things make all the difference these days.

More soon, but that is where we are now."

Please continue to pray for the Tuttles as they face the challenges and joys of each day.

Blessings,
"Gran" Sarah

Weekend Update from Carrie

I received a great update from Carrie...

"The Tuttle family has been pretty busy in the last week--between celebrating birthdays, going to doctor's appointments and actually getting out of the house a bit! Today was Chris' birthday--we had a great time celebrating with a walk in the gorgeous weather at Duke Gardens. It was so much more crowded than it has been in the past few weeks! We even ran into our friends Chuck and Dana Campbell, which was so nice.

Chris' parents came in for the weekend to celebrate and also to hang out with the kids so we could actually go on Friday night to his staff Christmas party (yes, in the church is often a great idea to get together as a staff well before or after Christmas...my First Pres. Burlington staff friends know that all too well. These folks didn't have quite the difficulty with the date planning, though. :) We had such a great time! then, we actually went on a date to celebrate our birthdays on Saturday evening too! I managed to have a little time to go to breakfast and shopping with my mom on Saturday morning too. Needless to say, I don't know what to do with myself. We were so grateful for help from Sarah and Robert and Pat and Bob to make this happen.

Heath is doing pretty well. We are trying desperately to settle into some sort of routine. We're having to take one day at a time, as we have always been told that we would. As a planner, this is tough for me to do sometimes, but I am working at it. We had an appointment on Thursday and the blood work showed too much acidity. Here comes the viscious cycle of the medications (which I will write about later this week as some folks have shown interest in knowing more about these). He has to be on these medications to fend off his body's rejection of the heart, but it makes his stomach not feel too great sometimes. And then he is on a few to fix the problems that the other medications cause. and now he has to drink this awful tasting stuff (bi-carb) for the acidity/dehydration issue, but it makes him not want to eat or drink anything else which can make him more dehydrated... AH, never a dull moment in the Tuttle house. We spent much of Saturday trying to be creative about what we could mix this one medicine with to make him drink it (I can only imagine some of your suggestions...)! We're going back tomorrow again to see what his numbers look like. Lots of doctors appointments, but we're so glad to be home and drive TO the hospital for appointments! All in all, he is really doing well. He is crawling and cruising and standing up a bit. The physical therapist is thrilled with his progress too. He is just a happy, pretty chilled out guy.

On another fun note, we have a contract on our house in Greensboro! We are thrilled that if all goes well with inspection/closing, etc...we can start looking for a permanent Tuttle home in Durham. YEAH!

As always, we are so very grateful for all the love and support that we have received from you all. We wouldn't have made it this far through this without your love and prayers. Please forgive us for not being the best communicators right now. With being home with two busy kiddos and all the extra stuff that comes with Heath's continued care and Chris being at work full-time now, we haven't had as much time to return phone calls and emails.

Blessings and Peace to you all.

Love, Carrie"

With continued gratefulness,

"Gran" Sarah

Update from Carrie the Birthday Girl!

Happy Birthday Carrie! The Staff at First Burlington sang "Happy Birthday" to you - hope you "heard" us!

Carrie emailed me with some great pictures from some wonderful family time yesterday. She reports, " We got to take a great walk today. It was glorious to see Heath's smile and to hear the two of them giggling in the wagon. It's funny how the simple things in life are so much more meaningful now."

Enjoy the pictures and many, many best wishes for a wonderful birthday today Carrie!

Birthday Blessings,

"Gran" Sarah

Friday- Settling In

Carrie reports enjoying the luxury of settling into a routine with Baby Heath and Ella Brooks. With two pre-schoolers at home, there is never a dull moment! Ella Brooks had finished feeding her brother some baby food and being a great big sister. I could hear Heath over the phone just babbling away- he certainly had lots to say!

Heath continues to progress well. The physical therapist is making home visits twice a week but continues to be amazed at how well Heath is doing. He is crawling well and pulling up but the physical therapist wants to help him with the movement in his right foot- perhaps turned a little by the way he was laying for such a long time. Heath continues to have a good appetite, gain weight and just enjoy "hanging out" with his family. His easy-going personality has continued throughout this ordeal.

The Tuttles are looking forward to a quiet weekend at home. I hope to update more early next week!

Blessings,
"Gran" Sarah

Heath is Back Home!

I had the pleasure of spending the morning with Ella Brooks while Chris and Carrie dealt with the hospital care and release details for Heath. Ella Brooks and I had a wonderful visit and she always makes our time together fun and interesting! What a bright spot in our lives she is!

When Carrie and Heath returned home from the hospital, the first thing Heath did was reach for his big sister! He was thrilled to be home and immediately showed off his crawling skills for us. He was as full of smiles as always. The only indication he had been in the hospital were a few bandages! Amazing....another bright spot to be thankful for!

Carrie and Chris continue to manage the new normal but enjoy as much family time as possible. I passed along lots of hugs to Heath, Ella Brooks and Carrie from each of you! Continue to keep them in your prayers as the healing continues.

Blessings,
"Gran" Sarah

Picture of Heath- Post Catheterization

Chris sent me this picture of Heath post-catheterization and called with the good news that the procedure went very well! All the results are exactly on target as to where they should be at this point in the post-transplant stage- not where they should ultimately be but just right for this point in time.

Heath's port is OUT! While under sedation for the heart cath. he did have an IV placed in his arm in order to finish the current course of antibiotics before he goes home. However, Chris said the "race is on" with how long Heath will "decide" to keep it in! As he gets busier and busier (yeah!) it gets harder and harder to keep the IV in. However, they are hopeful that he can keep it in until Wednesday and then go home IV/Port free!! Who knows however since he thinks pulling up on the hospital bed rails are really fun!

Just wanted to share the good news...

Blessings, "Gran" Sarah