Everyone Has a Job To Do

Sent by Nicole on April 1, 2011 (and none of it is an April Fool's joke!)

I used to be a nervous flyer.  Thoughts like, "Gee, I hope the mechanic who worked on the wheels was in a good mood today and tightened all the screws," would often run through my head.  Crazy as it seems I’m probably not the only passenger to hope that everybody did their job and did it beyond "okay". 

In the last eleven months, I have met more people than I can count. People from all facets of the health care industry.  My rolodex is ridiculous!   And it gets thicker every week.  In a single day, it’s not unheard of for my phone to ring ten times in a two-hour period.  Those days are always crazy and both children seem to know Mommy is juggling ten things at once and make it even trickier by vying for more attention.  (But that’s kids for ya and being a mom, right!)  If you could live with me for just one day your head would spin.  I deal (work) with so many organizations that my filing cabinet is about to get a sibling.  Luckily, I’m somewhat organized and usually on top of things but without Wrenn’s team of professionals I’d be having meltdowns. 

There are three facilities in the country known for doing infant lung transplants and those in Texas and Missouri are the top two.  (Meaning they’ve done the most).  If you have to have a transplant, you really can’t go wrong with either one, and what I can tell you is that here in St. Louis, the people working on the wheels of the plane go WAY beyond their job.  I know I’ve mentioned before how Wrenn has a team of professionals comprised of nurses, doctors, surgeons, social workers, a genetic scientist, financial coordinators, healthcare representatives and a dietician.  (I’m sure I’ve forgotten somebody, sorry).  But how they keep me and Wrenn’s information all straight amazes me daily. 

The thing is, Wrenn’s transplant team is now her, and our, extended family.  We will see them, forever.  We will phone them, as I’ve been told time and time again, NOT ENOUGH.  We will continue to visit them several times a year, for as long as she lives.  She will never go under the radar where St. Louis is concerned.  And I tell you this, because for everything we as a family have gone through, we NEED them.  I would seriously be nuts if it weren’t for the wonderful transplant coordinators who keep it all straight; faxing in her prescriptions, not to Walgreens but to specialty pharmacies who are approved to handle her special rejection drugs that are made with specific instructions. The transplant coordinators keep all her records up to date with the pediatrician; everything she has or is going through - the pediatrician is informed of the situation.  They also know if she’s gaining weight and thriving developmentally.  If Wrenn’s lacking in any area, they let me know what needs to be done and instantly we are enrolled in a program to get her caught up.  

I can’t tell you how perfect these folks are and if you were lucky enough to work with them, you would completely agree.  At check-ups for any reason, there’s no rushing us out the door.  Every word is heard.  Every issue is examined.  Every question is answered and any issues with outside parties are fought, with their help!  If there’s an issue they can take care of to make my life easier, they help in any way possible.  They constantly tell me how good of a job we’re doing and that we will mess up and it WILL be okay.  What amazes me is that if there’s an issue at midnight, everybody on the team knows about it at midnight.  They all know what’s going on and although I feel bad about that 3am phone call, they sleep better knowing that everybody’s on the same page with Wrenn’s issues.  (And so do I).  I can’t tell you how comforting it is to know how in-tune everybody is with our daughter’s well-being.  I am impressed every day and no matter how many times I talk about them, you can’t possibly grasp HOW good they have been to us unless you’ve lived in our shoes for the last year.  My point is, I’m so thankful for everything at this moment in time and my friends will tell you, I’ve always appreciate everything I’ve been given or earned in my life.  Wrenn is just as important to them as she is us, and we all want her to beat the odds.

I guess when I saw Wrenn’s transplant surgeon last Monday he brought it all back.  This man, this fantastic surgeon gave my daughter a chance at living a normal life.  It was the first time he had seen Wrenn since she was discharged in mid-December.  He’s not a man of many words but he’s always upbeat and positive and has a great sense of humor; amazing considering he never sleeps.  He loves his job and is always ready for the next procedure and somehow does it beyond his human ability.

On Monday Wrenn had a chest x-ray before having her broviac removed.  During the procedure they had an ecocardiograhm monitor things incase she bled out.  It’s usually a pretty easy item to remove but it’s Wrenn; so everybody’s prepared.  She always keeps them on their toes.  

Wrenn was pretty upset when she came to.  She hadn’t eaten since the night before and had an IV running through her wrist.  She also experienced terrible gas that needed to be vented through her G-tube.  I’m not sure why but procedures that put her under always upset her digestive system, sometimes for a few days.  (It’s a mystery as to why but now I know, and am better prepared afterwards). So now it's out - and here is part of it.

Not having the broviac is wonderful.  She even seems to have a bit more kick and smiles and moves around like a little champ.  She’s starting to lay against my chest and fall asleep; something she hasn’t done since we were in the NICU in Florida.  I think the broviac kept her from doing that and now she has no restraints. I don’t miss telling her to leave it alone 20 times a day either.  The constant stress and maintenance is gone forever. The only piece of plastic left on Wrenn is the G-tube.  As soon as she’s a perfect eater I’m going to teach her how to take medications by mouth and then that item will be removed, too.  Oh, here is the last bottle of breast milk Wrenn will enjoy.  She is now going on soy formula.

Wrenn is getting so strong.  She’s no longer crawling like a wounded soldier.  I think the therapist called it ‘combat’ crawl.  I feel she’ll walk pretty soon after she perfects crawling. 

She’s such a ham; loves the camera, likes looking in the mirror and giggles without anybody cuing her.  She grabs at everything and continues to watch Tanner 24/7. 

Her hair is coming in thick and she loves eating by mouth.  I’m feeding every hour is seems like and in the last check-up with the nurse she’s gained weight. As of Thursday she’s 7.33 kilos ( 16.1 pounds) and 27 inches long.  She loves music and moves to the beat with her body, wiggling back and forth with a big smile on her face.  

Tanner gives Wrenn toys and then she drops them and he gives them back to her again. He doesn’t understand why she keeps dropping them.  It’s funny to watch the two interact. Once she’s walking his world will really be interesting.  As a nosy little sister she’s going to drive him crazy following his every move. 

Wrenn no longer has defensive hands with me.  She takes my hands, pats me and smiles.  She allows me to pull, touch and caress her hands without feeling threatened; definitely a positive change in her ability to trust.  So I now worry about monthly labs.  Every time we have blood drawn we can’t access the broviac anymore.  They have to stick her each time and baby’s veins often break down because of their size.  If she’s stuck too many times and has no more available veins she’ll have to get an under the skin port.  The reason she didn’t get one this time is because there’s a risk of infection; being a foreign object in the body.  Not good for transplant people. 

Her next bronc is scheduled for early June along with her nine month tests.  She is still getting monthly infusions (next one is mid-April).  The infusion will be different this time since she doesn’t have the broviac.  This is the day the nurse will draw all her monthly labs.  It’ll probably be harder for me to watch than it will be for her to go through but it’s necessary to keep her medications accurate with blood levels. 

Today she received a Synagis (RSV) shot and then in a few weeks she’ll receive another round of immunizations.  It’s vitally important that she be kept up with all health needs.  Like I said before, the transplant team keeps me organized and therefore sane.  So far, they haven’t missed a beat!