Saturday, September 11, 2010

Give me one reason to stay here...

...and I'll turn right back around.
-Tracy Chapman, Give Me One Reason

There is just ONE reason that we're still here ... coumadin. Or, more accurately, the fact that Jay seems to be hiding his coumadin in his armpit. It takes a while for some people to get to a theraputic dose, but apparently he is immune to the stuff. They have been giving him coumadin every day for at least 3 weeks ... or maybe it's been 4. (Things are starting to run together as we enter our SIXTH week here at CHOP. Oh my...) I'll go with 3 since it makes me feel better.

So, yes that means that every day for the last 3 weeks our friends (cough, cough) from phlebotomy have come in at 6:30 a.m. to draw blood. How's that for a fun way to start your day? Every single day? (They start early so that the INR level is back by the time they do rounds.) They are aiming for INR between 2.5 and 3.5. So far, Jay hasn't broken the 2.0 mark. Until he's in that range, he has to stay on Heparin, another type of blood thinner.

Problem is that Heparin leaves your system very quickly, so he has to be on a constant infusion. So we drag around the lovely blue pole with one little pump of Heparin everywhere he goes. And while I'd love to be able to drag that pole right onto the airplane and figure it out at a hospital closer to home, so far they aren't going for that idea.

They idea that they are now willing to consider is also not particularly fun. Starting tonight, Jay will start on Lovenox shots twice a day. They will give him those tonight and tomorrow, then check to see if he's theraputic on yet another anticoagulant. (Third one's a charm, right?!) THEN they'll decide if we can do those shots on our own. At H - zero - upside down W - letter on the eye chart. (While Derek has mentioned heading to the H-place publicly, I'm not saying the word until we've got the boot!)

I can't tell you how frustrating this whole enterprise has been. I am starting to feel like a hostage here. This morning, I just wanted to scream, "Why are we continuing to do the same thing and expecting a different result?! Why are we throwing larger and larger doses of medicine at the problem with no improvement?! Why can't we work this out in NC?" But a blood clot on the shiny new mechanical valve would be bad. Really, really, really bad. Like surgery to replace the valve bad. So, I am digging very very deep in my well of patience to try and suck it up another few days. But that well is running awfully dry.

18 comments:

Anonymous said...

I have no idea how hard this must be for you. But I do know how it feels to be at the end of your "patience rope" and that is not a fun place to be. Nor is it fun to get your hopes up because things are looking up and then feel like you may never actually get to go to that H-place. So hopefully you can find a little more patience in that almost dry well.
Lots of love to you all,
JB

Beth said...

I am not of the mind that patience is a virtue. Impatience is what keeps you moving forward, from getting complacent. Impatience is what keeps one eye looking down I-95 and from becoming a Phillies fanatic. Impatience is what keeps you from settling on spending your days flipping channels, eating at the hospital cafeteria, and thinking that maybe autumn in Philadelphia is not such a bad thing. Impatience means that you have a wonderful life outside the confines (and confinement) of this wonderful but tiresome institution known as CHOP, and are ready to get on with it. Impatience means that you have confidence that you can provide Jay with good care at home, and you are unafraid.

Embrace your impatience. One of the most wonderful people God ever put on this earth - Papa - did not embody patience by any stretch, but his life was one of creativity and accepting challenges and never settling.

Embracing each of you as you ascend the last few steps of the Art Museum.

ILYATVB - Gabby

Anonymous said...

I think we can all relate to not having patience or having our patience wearing thin. I think what it amounts to is we don't have control over a certain situation that tries our patience. I believe this is when we start giving more and more to God who is in control. Don't grow weary- Isaiah 40: 28-31. I used to sing that in Church-"They who wait upon the Lord shall renew their strength, they shall mount up with wings as eagles, they shall run and not grow weary, they shall walk and not faint. (and added) Teach me, Lord. Teach me, Lord to wait".
I hope the Lovenox works. Maybe Coumadin will work down the road sometime.
You all remain in our prayers.
Love,
Aunt Ali

Diane Willeford said...

Did you see my email that I was on Lovenox for six months during and after my pregnancy with Scott? It definitely wasn't fun to be stuck twice a day - (see if they will go with once a day!), but you really do get used to it - of course, I wasn't two. Feel free to call with any questions about what it was like to actually live with being on Lovenox 2x a day. I'm keeping my fingers crossed that at some point they'll get Jay's coumadin level right so he won't have to be a giant pin cushion for too long.

Kat Moncol said...

Hi Jen and Derek!
Kat Moncol from the neighborhood here. Just wanted you all to know that we have been following your blog and lots of prayers for you ALL! We can not wait for you guys to be back at ----! Lots of animals around the neighborhood right now. Many feral cats and kittens, a fox, a woodchuck, three deer (they were standing in the street at Plantaion and Hillmer on Friday night), a barred owl that is really awesome and of course the really cool hawks. Maybe the Lovenox will do the trick. Prayers coming yoru way.
Kat

Anonymous said...

I appreciate your honesty.

Just keep putting one foot in front of the other -- that's all I know to say.

And know we're pulling for you.

Lynn

Cara Lynn said...

Hey Jen...all you'll need to do is reference "These Boots are Made for Walking" and we'll know that the H-place is on the horizon.
Maybe if Jay starts doing his Rocky pose...the coumidin storage will be activated???
Keeping you in our prayers,
Cara Lynn

Anonymous said...

My MIL says it's wrong to pray for patience; instead you should be praying for wisdom. Sorry, but I disagree. In your case, you know Jay still needs to be there. Your head knows; you have the wisdom. It's the heart's desire to be elsewhere that needs some help. Pray for patience, the patience to accept that Jay's body will heal on his timetable not yours.(Doesn't that sound just like a typical 2yr old? Mine,mine, mine!) Pray for peace, that your heart can find peace in knowing you really are doing what is best for Jay.

If all else fails, blame me. :-) You're stuck at CHOP until your box of goodies arrives from NC.
May your week be filled with answered prayers.

Amy

Amy said...

Sounds like today's recipe should be a chocolate one! My pretzel treats will satisfy any sweet tooth and provide you with the healing powers that chocolate seems to have on our well being!
Pretzel Treats:
1 bag of square shaped pretzels (they do exist)
1 bag peanut butter hershy kisses
1 bag dark chocolate m&m's
(Some say you can vary the flavors of kisses and m&m's- I don't reccomend that. This is the PERFEECT combination... lots of testing involved...safe yourself time and start with the best)
Preheat your oven to 275*.
Place a sheet of parchment paper on a cookie sheet and lay out the pretzels in a single layer.
Unwrap and place a kiss in the center of each pretzel.
Pour m&m's in a bowl and munch on a few while the oven is heating up.
When oven is ready- place pan in oven for 2-4 minutes. Keep an eye on the kisses. They will start to look shiny and you'll get scared that they will melt to oblivian if you don't take them out. If they start to droop- you've waited too long. But they'll still work.
Next- pull them out of the oven and WORK FAST! Place a m&m in the center of each kiss. (I promise- the kiss will NOT melt through the pretzel) Just mash down the point in the center and it'll look like a button. Put pan in the fridge for about 10 minutes to set.
Easy. Yummy. Smiles!

Anonymous said...

I am so glad you asked for recipes. I am gaining weight just reading this yummy treats.
LY
Aunt Ali (getting plumper by the reading minute)

TOJ said...

I love you! That's really all there is to it. It's perfectly normal to want to come home, we all want you home, too!

Recipes? I haven't cooked in a year so I'd have to dig down pretty deep. I could, however, tell you about all the convenience foods I love. We so need to have a batch cooking day with all the sisters once you're home and settled. A day of laughter does a body good.

I hope Lovenox does the trick. I like to think of it as my miracle drug. Without those injections I wouldn't be a mom to Sam or Gabe....

Becky said...

hang in there, you've come so far!

Anonymous said...

Hey guys! I have not been on here in a few days....lots of meetings at night lately, it seems, and in-laws here this weekend. I am so tired - my 70 year old mother in law can shop me under the table any day! Whew! Glad she's gone! ha, ha Anyway, I am astounded and thrilled about all the progress Jay has and is making. It is so exciting on this end, and as I have said before - to the outsider like me, it seems he has come very far. I know being there every day....it must seem so slow. Try to stay positive - I know you are. We all think your whole family is amazing!! My story for this week, is that my 16-year old is getting her license on Thursday!! Uh-oh! Watch out Wake County! (See what ya'll have to look forward to in the future!?!). Anyway, I'll keep you posted, especially if there are any funny stories. God Bless!

Neva M.

ANAPatterson said...

Hey guys. We are thinking about you. IM so glad Jay is getting better and Luke is being such a good boy. I hope they can figure out the whole blood thinner med thing soon so yo uguys can get back to NC..I didn't say the H word. Here are two verses to help ya when you are struggling with the being patience thing...Phil 4:13, and Proverbs 3:5,6
Been thinking about you guys. Love, Hugs, thoughts and prayers!

Sarah Schroeder said...

I'm so glad to hear all of the improvement- I have been thinking of you guys so very much! I have heard that coumadin is a real pain in the booty. I refused to go on it after Tasman was born and opted to continue on Lovenox instead. I have been brainstorming all day to try to think of how you can make it easier to give a two year old shots... The only thing I have come up with is the little trick they used to pull on me at the dr's office when I was little and had strep throat all the time. They would draw a little rabbit on my arm and then poke the rabbit for the "rapid" test. I think it did make it a little more tolerable? I will be praying for you guys and hoping you get to make the journey back to raleigh as soon as possible!

Amy said...

Today's recipe is one that my dad loves and I have finally (after 36 years) come to appreicate and even enjoy.
Pickle Sandwich
Bread (sliced or a flour totilla)
Butter
pickles (bread n' butter, sweet, dill- whatever you like)
Butter your bread, add desired amount of pickles and enjoy.
I like to use a flour tortilla, butter and "bread n' butter" flavor sandwich stacker pickles. Place 2 lengthwise on the tortilla and roll it up.
Hoping things are going well!
Amy Kunkle

Amanda Grace said...

My head nods as I read your post...and I agree and understand and get frustrated right along with you...I will pray for you all during this waiting and watching time...We "feel your pain" in this unfortunate connection of long hospital stays and precious angels with sick hearts. But, we are believing that Jay is on his way...and sooner than later, he will be home again. Praying for you guys and for little Jay. Can't wait until no more needles are ever needed again!

Anonymous said...

Jen and Derek
We are pulling for you guys to get away from there. We miss you guys and hope to see you very soon. I can only imagine how frustrating to be so close to being set free. We will look forward to celebrating with you as we have all along the way.
Ginger