Heath's Leg Surgery TOMORROW MORNING!

Shame on me--here it is again about 9 p.m. on the night before Heath has a procedure, and I am just writing about it.  This one came up pretty fast--and we actually didn't know it was going to happen until this past Thursday!  Heath is having a heel cord lengthening surgery tomorrow morning at Duke at 7:30 a.m.!  (whew, you might first need to say a prayer that we get there on time at 6).  The procedure is only supposed to take about an hour, and I suspect that we'll be home by mid-afternoon.  He'll have to wear a cast for 6 weeks and then will have a new boot that he'll have to wear pretty much all the time after that.  But, it should give him better range of motion, which is what we're shooting for.
background:
I have written many times about Heath's "leg issues."  They think that he probably had a small stroke while he was on ECMO (life support) pre-transplant and that it just happened to only affect the way his right leg tightens.  If you have seen him this summer, you have probably noticed how he looks like he is "toe walking" with only his right foot. Or you might have seen him with his AFO (boot) and said, "what happened?"  Because this is neurological, it does not go away with just PT and some muscle memory work, unfortunately.  This is something that Heath will have to battle with for life- that is a battle we'll all take.  The more active Heath has gotten over the years, the more this issue has caused some pain and frustration.  I am always so proud and amazed by the way he seems to take it in stride, almost as if he doesn't even notice that he can't run as fast as his buddies.  Every once in a while, my heart sinks and the tears well up when he says, "I just am not as fast as those guys..." but then he jumps right back in and comes up with a new game to play.  He certainly is a resilient little guy!

So, we'll let you know how surgery goes tomorrow.  We'd be grateful for your prayers and thoughts during that time and for the week that we're supposed to "lay low" post-surgery (everyone might need a prayer with Heath Tuttle stuck in the house on the couch for a week! whew!).

Blessings and peace.
carrie

annual heart cath tomorrow morning!

we've been so busy and my fella has been doing so well that I neglected to post that Heath is having his annual heart cath tomorrow morning.  We are due to check in at 7 a.m. at Duke, so i am sure chris is upstairs wondering, "what on earth is carrie doing down there..." 
As always, we'd be grateful for your thoughts and prayers in the morning.
We've been at a fun wedding at Atlantic Beach this weekend AND finally have been potty-training (heath, of course), so I guess we've been immersed in living that "regular" life our folks at Duke keep telling us to live...I will have some glorious tales of potty-training a hilariously verbal and full-of-himself 4-year-old once we get this little procedure out of the way tomorrow.
Tonight Heath called chris back into his room and said, "daddy, why do i have to have a heart cath?"  Tough one to answer.  Brought on a few tears as we realized that this is a whole new world as he understands more and more.  "we're just checking everything out, buddy."

blessings on your night.
carrie

coming full circle...

So chris and I had lot of time to reflect on the really great graduation weekend as we drove home for 8 hours in the rain on Sunday.  Chris graduated with his Doctor of Ministry degree on Saturday after working on it for 6 years(so proud of all of his hard work)!!  It was a busy weekend--and we didn't get a chance to see a bunch of people who we wanted to see--but it was a wonderful time of bringing some pretty important parts of our lives full circle. 

For me, it started in the bathroom of the Richards Center at Columbia.  The kids and i had been riding the MARTA for an hour & a half and realized that we really had to go to the bathroom as we got to Columbia for the graduation picnic...Suddenly it hit me that the last time i had been in that bathroom had probably been 9 years ago as I was there for Chris' MDiv graduation, a week before our wedding.  And here I was, with my blessed children reflecting at the top of their lungs about trains (let's just say we were a bit of a hit on the MARTA) and how much toilet paper EB should use and when Heath would stop wearing diapers (daddy is going to work on this post-school).  Goodness life is different now than it was then.  I just laughed out loud, and I think the person in the other stall did as well... 

We had some wonderful time to see beloved professors and friends.  We were able to say "thank you" (doesn't quite seem enough) to the director of the DMin program who wouldn't let Chris quit when Heath was in the hospital in those dark, pre-transplant days.  "We don't need to make that decision right now, do we?"  he had said.

Our children ran around with friends' kids on the quad--only 1 had been alive all those 9 years ago (we were remembering hannah in her baby carrier at our wedding...).  Vickie graduated with her D.Ed.Min. with Chris--having known him as a close family friend since middle school. What an amazing feeling to watch Dawn Martin Hyde graduate with her M.Div.--after spending our time in Burlington together, and our lives constantly intersecting.

On Thursday Colleen and her whole family met us at the aquarium--what a wonderful time to meet new friends (EB made a new special friend in C's niece, Abby).  Ask us about the dolphin broadway show--only if you dare (chris might sing)! On Friday we ran around the playground with the Lamars--smiling as our children enjoyed playing together just as we have enjoyed spending time together all these years.  We had a wonderful dinner with family (cindy & matt, pat & bob) and friends (those wonderful 3 sets of friends who had housed Chris over the years--lamars, kimberly & ellen, colussy-estes) and were thinking about how amazing it is to be able to have those people together, having made so many memories throughout the years together.

We took a walk on Saturday from our hotel (wow--kids love hotels...) to the Centennial Olympic Park fountains.  The joy of watching Heath run through the shooting water was almost too much to take for this mama.  (Aunt Cindy almost got to go in with EB, too!)

Who would have thought, a year or so ago, we'd be laughing at the extreme joy he found in being soaked through, running around with lots of other children? 

We even made it back to NC in time to have a really nice Mother's Day dinner with Mar & Rog and Aunt Nancy & Uncle Robert at Mom and Strow's house.  And we all danced, just in case you were wondering...

I suppose all of this is to say--wow--life really surprises you with the goods and the not-so-goods and all of the time in between.  I am sure that we'll continue to come full circle, or perhaps we'll just keep running in circles (we'll throw chris' new graduation garb in the costume box for the kiddos) but i sure hope that we will be able to stop and appreciate the love & memories & miracles along the way.  I hope you'll do the same, my friends.

Speaking of miracles--we have been able to help jump-start a new campaign for Duke Children's with the Children's Miracle Network that pairs bloggers with patient families.  Shell, who writes the "Things I can't say" blog, wrote about our story and is helping with the Miracle Moms campaign--

http://thingsicantsay.com/2012/05/miraclemoms-helping-children.html

check it out!

we'll be seeing you soon!

We're Home!!!

Well, we're home. We got home around 1:00 p.m. this afternoon. Heath really took a crazy turn for the BETTER yesterday afternoon--it was so great. He colored and played cars with Mimi, threw a plane with Kristi, our wonderful physical therapist who happened to be working in the hospital on Sat. The doctors had pretty much told us that they really wanted to see that he would drink (and hopefully eat) on his own and that he didn't spike a crazy fever again. And then we could go home sometime today.



So Heath Tuttle was fired up about going home. He got a little more fired up about eating as I reminded him of the "incentive" gift hiding in the hospital room that EB had picked out with Ama and Grandpa Strow. He ate more food than he had had in several days (sad this is 5 bites of pizza and half a tub of easy mac--god bless those nurses!). He opened his present (see above pic) and said, "IT IS MY FAVORITE. IT'S A SUMMER VACATION!" It was a playmobil camper/rv complete with "mans" and bikes and a tv and soccer ball. hilarious. We are, however, looking forward to a "vacation" from the hospital. :)
Turns out, Heath really did have those 2 common viruses at the same time that got really bad that also seemed to trigger an episode of his gastroparesis (last hospital visit). We've adjusted meds again and will have to go back for a med level check on thursday. Then, we'll probably wait about a month before we do the heart cath that we postponed last week.

It was really nice today for the staff at Duke to see Heath be so much more the hilarious little person that we all know and love. The hospital staff often only get to see the kids at their sickest, and I love for them to see them happy and healthy to see what their amazing work makes possible. He yelled out the door to the main desk, "I ate some mac & cheese, can I go home now??" and then the nurses got on the intercom to the room and said "Heath Tuttle, you are a good, good boy..."
He was sooooooooooo glad to be home--and now he and EB are dancing around the den with shades down, lights off with the laser fingers that came in one of his wonderful gift bags.

We're going to take it easy this week, so those of you around here might not see too much of us. But we feel really good about where we are. Thank you for your love and support.

emesis is our nemesis!

post that I did not send last night--

ok, so I have been dying to write that title all day long. Each time we're in the hospital, we learn a new word. Last time was idiopathic, which is a fancy way of saying "we have NO IDEA what caused this to happen." So far on this thrilling trip, we've learned 2 new things:

1. Emesis=fancy medical way to say THROW UP

and 2. K.U.B.=fancy way of saying you are getting an xray of your belly (Kidney, Uterine, Bladder but apparently you can't actually see those well on the particular xray? hee, hee)

For those of you who are medical people, I apologize for anything I have written incorrectly. For those of you who have young children, particularly daughters, didn't you like my use of Fancy Nancy phrasing? :)

I am sitting in my bed, showered, semi-relaxed, trying to make myself go to sleep and NOT stay up to watch my WOLFACK(!!!) play the whole game since this is my night to get some sleep. And i am sleepy.

Last night was a long night--I am afraid that emesis was our nemesis in the midst of a 103 fever spike around 11 p.m. He really had a hard time settling down and he just felt really bad, as he had for the last 5 days straight with high fever. We really had no answers, but we did have the sense that we were not looking at something really bad...we also knew that heath really didn't feel well. It is hard to see your child hurting and to not be able to fix it.

As I moved from his bed to the recliner when he finally started sleeping a little more soundly, I found myself wide awake listening to the familiar sounds of the hospital at night. In the dark of night, you hear it all more clearly--a clicking sound from the IV machine with an occasional beep, nurses talking at the nurses' station, one child crying down the hall. The helicopter flies overhead every once in a while--and all you can think is, "oh dear, what has happened to that person? someone's life is changing forever in the whirring of those blades in the air..."

I was reminded of the dark night we spent in UNC hospital with our 9-month-old baby 3 years ago as we realized that life as we knew it had changed. I remember holding onto him for dear life through the night, so scared. Goodness we have come a long way in these 3 years. It is never easy to see your child hurting, though. Some things never change.

OK, so enough of my thoughts on hospital life--you would probably like to know what has happened today. We still don't know a TON. We did learn late this afternoon that the cultures came back showing that Heath does have 2 viruses (adenovirus and metapneumovirus, which are evidently pretty common regular things). We continue to be unclear if there is some sort of secondary infection or not. yesterday was frustrating with his lovely GI tract, lots of gas and discomfort and not much eating. We've had consults with ID (infectious disease--a name to freak you out!) and GI. We've had incredible care. Heath had visits from quite a few of his favorite ladies today--Shelley, Mar, Mattie Anne, Helen, Julie & Kathy (preschool teachers), Renee (we call her Nee), and Mimi. They came with tasty treats, balloons, fun things to play with. Heath's Turtle Class sent an amazing set of treats with police cars that finally helped perk him up and got him playing!!! EB is having a fun sleepover with Ama and Grandpa Strow tonight. As I write this, I am reminded again that incredibly blessed to have such wonderful family and friends in our lives. Our adventures in heart transplant land are not easy--whew--but having the incredible support both here and far away makes it easier, and gives us strength.

ok, so I fell asleep before I finished the blog post last night--and here is chris' morning update. I am still proud of my wolfpack! (and i slept until 8am!!)--

Saturday morning update (from Chris this time). Heath had a really strong night of sleep, a huge blowout poop at 8am, and sweated and rolled around and his IV came out. We may not need it now, though. Heath woke up his very fun self today, playing and asking questions, drinking and playing with his cars and little lego men. Bit by bit. Feeling much better today, though. Thanks to you all!!!

from Carrie again--

We have made significant movement, on multiple levels :) today, but we still don't know what is next. There are still some questions to answer (including whether or not that darn IV goes back in...), but it is much easier waiting for those answers when Heath is a little more himself. We'll keep you updated as we go along.

wacky reunions...

so we had a reunion today that pretty much no one in duke hospital wanted to have--as we were entering the hall to find our room (we had just been admitted--will explain in a sec), we ran into all of our cardiology team doing rounds and they were at the room of our wonderful PICU roommie, who was also here. I said, "wow, its like old home week...but i might cry because none of us wants to be here all together so I am just going to keep on walking to our room..." At that point, Heath was still in a pretty good humor and had actually been giving me a speeding lecture in the car and telling me about the places he wanted to go in the hospital and that he wanted the "orange room." There are so many things that feel "wrong" about all of these statements, but i guess they also just remind me that this is going to be part of our life...

so, you are wondering why we are here at Duke, in this very orange room (of course they got one for us, bless them:)? Heath has had a fever for over 5 days straight. He had had a mild fever/ear infect/cough off and on for the last 3 weeks, but since Sunday this had been different. We came in here to duke outpatient on Tuesday for bloodwork/xray and at that point they said, "you know, maybe we should just admit him for a 3-day IV antibiotic..." Since we still thought it could be viral, we decided to see if it would get better over a day or so and then make the decision. He seemed so much better the next morning and I said, "take us off your radar" to our wonderful Duke team, only to have him spike a 102.8 fever an hour later. when it spiked again today, we decided it was time to come on in. he has been as up and down here as at home, only now he is upset about being in the hospital and being poked (but they did get the IV in ONE(!) stick!!!) and looked at all the time. he did enjoy a fun trip up to see the helicopter on the 9th floor with his dad...step by step.

the initial bloodwork has come back and it looks like he actually does have an infection. they are not sure where yet, so we're doing all sorts of tests/cultures to figure that out. so, we're hitting it with 2 broad spectrum IV antibiotics for a couple days and are hoping that that knocks out whatever it is. SO, as much as we didn't want to drag him in here, we know we need to be here.

as we walked down the halls this morning, we ran into nurses, doctors, social workers, child life specialists, nurse techs, other patients--and our nurse turned out to be a wonderful guy who Chris went to HIGH SCHOOL with in Black Mountain (we reunited with him the last time we were in here too). these are reunions that we'd rather not have--I always prefer to see these wonderful people in target or in a local restaurant--but I am reminded how grateful we are to be in this world-class place with these wonderful, caring people trying to figure out what's happening with our very special guy.

daddy is home taking care of getting our girl to bed and a sermon written. so my sweet fella and I are going to snuggle in the hospital bed and watch some basketball.
as always, we are grateful for your thoughts and prayers and keeping us company (and the wonderful activities from my bible study friends today--bless you!) on this wild and crazy journey. we'll keep you updated.

heart cath postponed!

heath had a pretty big coughing attack that woke him up for 2 hours in the night! ahhhhhhhhhhhhh....so, we just called Duke (well, I attempted to call duke) and said that we didn't feel comfortable having him put under today. Since it is not an emergency, I think this is best for all.
SO, we are postponing the cath. will keep you updated on the next date.

blessings on your day--hope you get to enjoy the beauty and warmth of the sunshine AND a little march madness!!!

carrie