Riley's Road: g-tube and reflux surgeries

Lately, I can't remember what I've blogged about and what I haven't. I'm tired to put it mildly and life is about to get much more hectic for us.

2 weeks ago we saw a feeding therapist, who is amazing, compassionate, can finish my sentences, and seems to get it better than any other doctor/therapist thus far. After an hour and a half of meeting with her and 3 of her other respected colleges, she shared with me that Riley must have a feeding tube. She feels Riley is a huge red flag for a severe dairy allergy. Dairy, because on most days, it's the only food group Riley actually consumes anything of. Riley has very poor mouth function, meaning that she is not able to properly chew and swallow her food. The severe reflux (that most doctors haven't felt is severe enough) has eaten some enamel off of Riley's back teeth. If that isn't severe, I don't know what is. 55 acidic reflux episodes in 24 hrs seems pretty severe to me. Wait to grow out of it? You want me to WAIT??? I'm not the most patient of people to begin with, but what these "doctors" have failed to see is that in the process of waiting to see if she will grow out of the reflux, Riley is the one who suffers. She is the one who pays by constantly having reflux, aspirating to her lungs and ears.In the meantime, as we wait, doctors tell me it will take at least 6 months to get her lungs fully clean, strong and functioning after the reflux is gone. Thanks, but at this point, I decided to keep pushing for a doctor with warm blood running thru their veins, who could care a bit.

Because of the severity of the reflux, the severity of Riley's lung issues, she needs a g-tube, otherwise known as a feeding tube. We need to bypass her lungs, get nutrition into her tiny body and take her off dairy totally.

Several people who see Riley often have offered me their advice that they don't think a g-tube is the answer, it's too soon, she needs more time to grow, it's so drastic, there's no going back ect. Well in one respect, they are right. She isn't growing and that's the problem. Riley has gained less than 1 whole pound since January. What she is consuming is going up and down her poor throat a million times a day, coming all the way to the top of her throat and staying for as long as 3 minutes at a time, going into her lungs and to her ears. I have to find a way to get nutrition into her body, bypassing her lungs. I've got to find a way to help her grow, to feel better. I'm convinced that Riley doesn't know what it's like to feel good, to be full. She eats random bits of food, usually 2 bites 3-4 times a day. It's not enough to ward off the hunger pains she feels.

Truthfully though, it sucks. I can't believe we are having these talks with therapists...and why are the therapists the ones moving on her behalf and not the doctors???? I am so very saddened that there is no other way than to put a tube thru her abdomen, that I will have to tube feed her. On May 6th, there will be a tube used to feed my daughter. A tube. A tube.

During the same operation, the surgeon will perform the reflux surgery, attempting to correct the reflux issue. I'm told he can take up to half of her stomach to use for this operation. Half??!!

I wish I didn't know words like MRSA, g-tube, reflux surgery, PICC line, in home care nurses, leg braces, ear tubes, staff, therapies, mental disorders, high developmental delays, chronic....

I'm terrified of the the surgery. Terrified to put it mildly, again. I know it's what is needed. I know because the Lord spoke it to me months and months ago. I knew it was coming and have had a peace...until it has actually started to happen.

What if Riley hates me? What if I've done the surgeries and therapies and all else to her? What if I've caused her pain and being uncomfortable? What if I can't care for her properly? What if I can't keep homeschooling? What if I drown once my husband deploys AGAIN? What if people treat her harshly because she's different? What if people don't get us and our life? What if no one helps? There are a million what if's that I just keep trying to fight.

Please pray for me, for my focus, for my peace. Please continue your prayers for my family. We leave this weekend for 10 days to the East Coast to visit family. Traveling is so SO hard with Riley. Please pray for my husband. It hurts his heart in ways that hurt mine, that his baby girl must go thru so much. Please pray for our marriage, that is becomes stronger in what tears most. Please pray for our big kids. They try hard to understand and show love and compassion but I fear they are drowning in appointments, in Riley's care and I don't want to miss them, to overlook them. Please pray for our Riley girl. There is so much she doesn't understand and I know she's tired of appointments and testing. Please pray she knows how loved she is, how perfect in Him that she is, how it's going to be ok...one way or another.

Nichole