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

Faith Choices

Bitter, angry, disgusted....my feelings for doctors. They have come along side of me so many times, offering to help, promising solutions only to let me down, drop our case, and just disappear.

I cry. I cry while driving, while in the shower, while folding laundry, while cooking dinner, while lying in bed waiting for the next day to come. I am angry, I am so mad and I cry. I cry for our girl. It doesn't seem fair that she would go thru so much, that her road be so long.

I stress. I stress over each appointment. I stress over the latest report, over the deployment that will be taking my husband far from home when I need him so badly. I stress over surgeries, over many ?'s from loved ones, I stress over every aspect of life for our life isn't what I thought it would be....it's no where near it.

My doctor says I'm depressed and handed me a bottle of anti-depressants faster than I could say, "no thanks doc." I don't agree.

I say that I have the freedom to approach the throne of Christ Jesus with ALL things (Hebrews 4:16). That means, all my emotions, all my fears, all my worries and what if's. That means I can ask Him questions I don't have the answers too, I can talk to Him of the most intricate details involving Riley's care. I can bring it ALL to Him. His shoulders can bear the load far better than mine. He's not worried of the latest report, of the surgeries coming, of the deployment. Nothing shocks Him off the throne so why do I then carry it on MY shoulders instead of allowing Jesus to take it on HIS?

I'm reading this amazing book called Faith In The Night Seasons, by Nancy Missler. The book challenges and encourages you in the midst of your "night season" to see Jesus at real work in your life, to learn how to handle the hard stuff we deal with in life while being able to truly praise and glorify the Father. Nancy Missler, reminds you that everything in life comes from the Father, including the pain and hardships as our lives are God- filtered. Every time I pick it up, I'm so thankful to my dear friend who suggested I read it as she placed it in my hands:)

I'm reading now about "faith choices" and "emotional choices" and how I have a choice in which I will choose to act upon. Faith choices mean that in the midst of the yuck, in my tears and fears, I'm choosing to trust Christ and His plan for my life (Jeremiah 29:11). I recognize that Riley is His and that He has gifted her to me, trusting me with her care. He has a mighty plan for Riley's life and has planned for every event thus far. I can trust Him, I can choose to turn my eyes to Him, I can put my faith and confidence in Him, rather than in doctors. I can choose to do my best with her care, giving my all to glorify Him by serving my family.

Emotional choices are what we feel as human and any action that involves our flesh. When I stress, freak out, melt down, fall apart, throw my hands in the air....it's all emotional choices. None of these glorify the Father, none show my faith in Him to others but rather allow me a pity party.

I encourage you today not to be ashamed of the emotions you feel but to really ask yourself in the moment what kind of a choice you are making. Are you looking to the Father, making a faith choice? Are you choosing to give Him glory, thankful that He is in control(James 1:1-2) Are you praising Him, looking for the positive in it all? Or....are you lashing out and giving up? Are you giving way to fear and allowing the enemy a foothold? Are you choosing to be idle, not serving, not giving of your time and resources to help others? Are you shaken by your circumstances and unable to see clearly (Psalms 16:8)?

We have a choice...one moment at a time, one day at a time to make a faith choice. We can choose not to give in, but to persevere in running the good race (Hebrews 12:1, James 1:3). I encourage you today to make every choice you make, a faith choice:)

Riley's Road: The Unspoken

I will first ask your forgiveness and understanding for what I write today. In a great attempt to protect the privacy of our Riley girl, I will refrain from being awfully specific on certain things. I pray you can understand and continue to just love her, just love her.

For the first time ever, we gathered enough sweat in the suctions yesterday to perform the CF test. I think it was daddy's touch....he held her and loved her for the entire very long process and it worked:) Thankfully, he was able to come to this appointment. We will know on Friday what the results are. I'm praying that lab techs and doctors at Denver Children's and National Jewish will have clear results and be firm in whatever the outcome is.

Riley has a feeding eval very early next week and speech, OT and PT evals the following week. After all evals are completed we will know what types of therapies (the intensity of them) and how often she will need them. As of now we are looking at 6 different therapies at least twice a week. I have no idea how it will work and am even more unclear as to how it will work once the deployment has begun. I truly believe her doc's are working hard to help. We are still waiting on her genetics appointment as well as her neurological appointments and the reflux/voice box surgery to be scheduled.

We are dealing with some neurological issues, heavy ones. The behavioral health therapists really heard us yesterday, she understood better than any doctor thus far, she really put some pieces together for us. Sadly, her news makes such sense to us. Our hearts are broken, so broken today. Why did I pray for answers? Would I be better not knowing? It seems I do ok for a few days and then something more awful comes about. The appointment with the behavioral health therapist was one I debated on canceling for a week but really felt the Lord speaking to me to keep it, that there would be connections made, and there was. There are no true tests, but rather watching Riley and knowing her, being an expert in this field, a fellow believer and we finally have some answers....yet there are many more we need.

Our girl is so much more than an opinion, a diagnosis, an appointment. She is a child, a very loved child, a child who has been thru so much in her 2 yrs of life. A child of strength who radiates the love of Christ. She is a picture of perseverance, of determination.

Please continue your prayers for her, for us. As I usually say, we need them more than ever.