Sunday, February 07, 2010

Through the Clouds


Samren, in February 2003. He had an NG tube for 3 months before going to a g-tube, and then on to a mickey-button


Little man sporting his 3/6 size Easter outfit at 18 months old! We took out his NG tube for Easter pics. =-)
This is what mickey button looks like. Really no big deal. You can see Samren's fat little tummy in this pic. =-)
Today has been a much better day. I feel like we're on the far end of a weather front, where the sun has started to peek through the clouds again.

First Praise: Bright is pooping! I know, I know..weird reason to celebrate. But I am happy for HIM! The best part is that he is going in the potty EVERY SINGLE TIME! I am just so happy for him. He is so proud of himself. He has soft stool, but not diarrhea and no pain from the miralax (so far). It would be amazing to me if after all this time his poopy problems were solved so easily. We'll see.

Second Praise: A day of rest! It was so nice to go nowhere today. To sleep as long as we wanted to sleep, to lay around and cuddle. Eric is bored out of his mind, but the rest of us were very content to do nothing all day!

No trauma today: Last night we planned to go ahead and try to give Kendi meds this morning. But then morning came. It was 7:30 and she was sleeping so soundly (in our room). She looked so beautiful, breathing in, breathing out. The "doctor's orders" were on my side. She said to stop meds if she threw up again. So when it came down to it I just could not wake her up in order to force the medications down her throat. I just couldn't. So Kendi got a day of rest in a different way than the rest of us. =-) She was so loving and cuddly today. At one point she saw the medicine on the counter and said, "Mommy? No medicine?" No medicine Kendi. Not today. She said, "Tank oo mama. Tank oo." Your welcome Kendi.

Hope for Tomorrow: I wrote to our HIV Nurse, Nancy, to let her know that Kendi still wasn't tolerating the meds. What a treasure this woman is. She wrote back to me tonight--on a Sunday night, before a week when she will be taking off from work. She told me how to get through to Dr. Stovall tomorrow. And she said that Dr. Stovall will likely recommend a g-tube. When I read her message I honestly started crying. Crying with relief. If you've always been able to meet your child's basic needs for food or water or medicine, maybe it would sound crazy to you that I would be relieved at the thought of a g-tube. But if you've ever had to live through the stress of watching your child suffer to get those basic necessities, then you understand. A g-tube (or "button" as we'll start to call it) is freedom. It is freedom from that stress and trauma that a child would otherwise go through to stay alive. It's being able to sleep at night, knowing that your baby is going to LIVE.

Our last week: This is our last week before Eric goes back to work. Hard to believe that we're already to this point! Eric cannot wait to get back. The kids and I? We love having him around during the day, so aren't in too much of a hurry to kick him back to work.

This has certainly been a life-changing month. I really do feel like we're through the thick of it now. Always darkest before the dawn, right? =-)

Anita

5 comments:

Rachel 10:14 PM  

I understand completely! If Miss A doesn't respond to this feeding therapy then we are asking for a g-tube. I can see how it would be very freeing for us and for you as well.

Amy 10:52 PM  

I am really relieved to hear about the g-tube. It sounds like the right choice from everything you've described. Then you can concentrate on enjoying each other and not dreading "that time of the day" anymore.

And yea for poop! We have a lil' man with pooping problems from time to time and we celebrate regular poops too! :)

Love you Miss Anita,
Fabu

Kait 11:38 PM  

Your feelings about the g-tube kind of remind me of what someone said about having bariatric surgery. (follow me on this one - I promise it makes sense!) She said that having the surgery freed her from the constant stress of eating and weight gain/weight loss. It made those decisions for her so she was free to work on every other facet of her life. If Kendi has a g-tube, it makes the med struggle go away and you can focus on bonding and attachment until Kendi can swallow meds and move on.

I'm glad your doctor will let you go in this direction and make life less stressful for Kendi.

Story of our Life 11:43 PM  

(((HUGS))
Good for your great day of rest!!

What a blessing these things have been in such whirlwind the last few days/weeks.

ANother stress on top of what is already stressful is not needed. Mickey, Button whatever it may be...

Kait - sooooo very true. I've had gastric bypass. I had the SAME thoughts. I also never once worried that I wouldnt' live to wake up after the surgery or post surgery or any complication. Reality - 150 lbs lighter I had an emergency hysterectoy and had SEVERAL more complications than I did with my gastic bypass. It is what it is....matter of life or death no matter how you look at it.

I can't help but wonder if at some point Ms. N will be headed down the road w/g-tube. Unfortunately, at this point in the game it seems to be clearly behavioral (with some medical stuff in there, too...)

mary grace 3:08 PM  

God is good, even when it looks like craziness to others, A. ((hugs))