NG What?!?!?!

It is nice to be home after a brief stay on the 7Th floor. We were on contact precautions, which for those of you who don't know, you have to gown up and wear gloves when you are bedside. Needless to say, me and the gowns became good friends, because Lily wanted me to hold her all the time. I wanted to lay next to her but she wasn't having it. Lily grew bored rather quickly, so instead of watching her Barbie movies, which were getting redundant, even for her, she decided that she needed to help with the plugging in of her monitors. Believe it or not, she actually got them all right once or twice. We didn't give her to much grief for this forum of entertainment, she didn't need to be on the monitor all day on day 2.

During the stay, we lost Lily's last IV site, and unless we wanted to put a central line in, which we really didn't, we opted out for the good ole' NG tube. Now for those of you who read my posts during Lily's last surgery, you will remember me talking about how we had one in but the doctor told us to pull it. As much as I hate the thing, I know in all honesty right now it is our safest bet med wise. I hate her throwing up her meds, or me having to hold her mouth shut and her throwing up and swallowing it. Just thinking about it makes me cringe, but with the blood thinner, it is not a force to be reckoned with. Tylenol or Motrin, if she didn't take them, ok, same with Lasix, it was what it was, but not the blood thinner. And then with her recent weight loss, the doctors finally relented and realized mom was right, and for now the battle of meds are nothing more then telling her not to gag as I push them through the tube.

I hate seeing her like this. When I have to change tape or reposition it, she gets her No-No boards on, that is truly sad to see. She is so pathetic as she holds her arms out for you to put them on and whimpers, but yet she doesn't fight you. Its like she has the will to fight it, but doesn't because she knows it has to be done. Although, she had a look of triumph on her face when she pulled it out on accident today. She rubbed her nose, took a few deep breaths and grinned.

I cringe at having to hold her down, reaching into the basket of supplies which was recently used for toys. Our hospital baskets as many know them by, have always been used for blankets and medical supplies, but recently I emptied them all out and put her toys into them. It breaks my heart to have to empty one out, solely for the use of the NG medical supplies. To deal with home health care supplies again. Just one more phone call to add onto my 10 daily I deal with. Many of my friends wonder why they don't hear from me these days. Between calling about an at home INR meter, dealing with insurance, case managers, prescriptions, and doctors offices, now I have to deal with Apria home health care. Once I wrap all those phone calls up, as much as I love my friends, sometimes I just don't have the energy to talk, or the brain span to. Life is so hectic these days, and as much as I know they are for the better, sometimes I can't help but want to go back to the days before this last surgery. Some days I ask myself did we truly make the right choice by putting the prosthetic valve in? When we go for INR meter checks she still has to be poked 3-4 times, because she just won't bleed. I hate needles, I hate being poked, I can only imagine her. I just want to throw my hands up and scream stop, just leave her alone. Take me instead...yet we all know that can't nor will it ever happen. I can't wait for what the future will bring with medications, because I hold hope that sometime in the span of Lily's life they will come up with something new, where she won't have to get poked all the time. She won't have to hurt all the time. Granted what is a small little finger or heel poke, when you might never have to have an open heart surgery again. Truly, that last sentence is all the keeps me sane most days.

Thank you to all my friends for your sincerest prayers and well wishes. Truly, I couldn't get through the day without God's help and I truly feel his presences around me in my time of chaos. He is the well needed breath of fresh air that blows me in the right direction. He washes over me like a wave washes over the sand, and with it he brings me comfort, strength and clarity.

Love Hugs and Blessings

Jenna