Tuesday, May 3, 2011

You Can't Always Get What You Want...

So maybe it's not the most original title. But cross my heart, I woke up with that song in my head this morning and it won't quite go away. It's a good song. It captures the feeling of bitter melancholy without stopping to wallow in it, and that's exactly what I need to do.IMG_9401

Our CHIP (State insurance) kicked in on May 1. I was waiting to post the celebratory "We survived a month with Cystic FIbrosis without health insurance!" post until the smoke had cleared, because frankly, I don't care to tempt fate these days. We celebrated our little success by visiting the pharmacy to re-stock and leaving a couple hundred dollars in their pockets in our wake.

Yesterday we went to the CF clinic for the first time since our hiatus. I was nervous and oddly, a little excited to see how we had fared on our own.

I knew that it was curtains for us the moment J hit the scale.

How did I not SEE a 1 1/2 pound weight loss? When you only clock in at about 20lbs to begin with...HOW? And although I'm glad the rest of the appointment progressed sort of slowly and gave me time to swallow the lump in my throat, I knew in that moment what the outcome would be. Jackson is getting a G Tube.

I'm pretty good at handling these things without letting my emotions get the best of me now. I know that appointment time is the time to ask questions, not to cry. And so I did. It's always funny to me how you can carry on a whole conversation & your head can be having it's own separate inner dialogue. Mine was "I'm going to be really upset about this once I call the family, run errands, make dinner & get the kids into bed."

Plans were made. I unfortunately had to call Mike at work to break the news to him, but I'm very proud of how he took it. All parents were called & informed. I really feel like I should wait for the news to circulate through the family before posting it here, but with the size of my family that could take half a decade.

I know this is the time to move forward. I know we have done everything humanly possible to avoid this, and I know that if we were to go on any longer without doing it I would feel irresponsible. In the past 7 months we have had only one good weigh in. Weight for length has gone from steady to dropped off the charts. He puts every competetetive eater to shame with his appetite, and yet he still can't meet his needs. It's time. I'm certainly not happy about it...but it's time.

Where do we go from here? First we have to schedule a barium swallow to assess his level of acid reflux. If it's bad enough, they will also perform a procedure called a Nissen Fundoplication. About a week after that we will meet with our team, have a pre-surgical consultation, and schedule the surgery. We'll probably need a day or two inpatient at the hospital. We will learn how to administer feedings and care for the stoma at home, and hopefully be back in our own beds soon.

After that, we will pop open the little beach ball like valve on J's tummy every night and pump in the calories he can't get by mouth. Hopefully he will begin to gain the reserves he needs to stay strong & fight the things he needs to. G tubes are generally very well tolerated and effective, and we should see results pretty quickly. While I can't hypothesize about the long term need for the button, I hold out hope and will do everything possible to try to get him to a state of health where it's not necessary to have.

And finally, yes I'm ok. And yes, it sucks. And no, I don't want to talk about my feelings. But ultimately it doesn't matter how I feel about it because it needs to be done.


  1. (((hugs))) Amy, you guys are having a tough patch with lots of quick changes. As you know soph is tube fed (for different reasons) and also had a nissen fundo done at 6 months. If you want to know anything at all do not hesitate to contact me any questions at all as we struggled to find anyone who had the nissen done at such a young age when sophs was done.

    I wish you guys all the best and you cannot say you haven't tried your hardest to get the weight on little man. Your drive and effort has been outstanding.

    Take care x

  2. I will be praying for J and your family. This is a positive thing and like you said before, he will be in good hands at COOKS. I am thinking of you guys..XOXO Crystal

  3. you are right that you've done everything humanly possible! cliche--but it will be okay. hope to kiss that sweet baby's head in a few weeks!

  4. Bummer about having to resort to the tube. I hated having to give in to it too. I thought for sure I could do it on my own. But it did help and I'm sure it'll help J. Soon you'll have a little chubby boy, haha! Hope everything else is going good with you! :)

  5. Sweet Amy. I know that J having a tube placed has to be weighing on your heart and I keep you in my prayers. Having actually been in the position that you all now find yourselves in let me try and share some positive experiences. As you well know I have another friend that has two daughters with CF. Both girls have had to have a tube placement in the past and it gave them just the boost they needed to get over the hump and attain a healthy weight. They both got their tubes removed and are relatively happy, healthy little girls. Nina has also had a tube placement and it was a literal life-saver when she was not able to swallow. At that same time in her life the doctors realized she also had a horrible issue with GERD and they did a Fundo on her as well. Even though these bumps in the road are scary and hard to handle sometimes they provide amazing results and improvement! Love you all! Hang in there!

    Love to you and yours,

    Shauna Ann Hunt-Keeler