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.