Cartwheels

So I finally got around to calling our ped today to discuss Sloane's progress in Operation Fluids. I had been dragging my feet in calling her; I wanted to be sure that I could give her accurate information based on significant time frame.

So here is how the conversation went: (I am in black/Dr. in red)
"Hello"
"Hi, its Dr. Reibman"
"Hi, How are you?"
"I am good. How is Miss Sloane?"
"She is great. I wanted to update you on our progress over the past 2 weeks. In addition to the 2 tube feeds of 3+ ounces of milk, on an average, Sloane is drinking 12 to 18 oz. of thickened liquid a day. Most days it is about 15, but we did have one day when it was almost 30."
"Wow, that is great. What progress. She doesn't need that feeding tube anymore. I'd like to pull it"
"Really??, that is water though. Not milk."
"Tarra, as I have told you before. I have many toddlers who do not drink milk. It is okay"
"Okay. I just wanted to give you all the facts before we proceed."
"As usual, I know. You are a mom who gets all the facts."
"So, I have a question. If we take the tube away and Sloane only drinks those 15 to 18 oz. of liquid a day, is that enough."
"Yes, it is."
"Okay, we are going to swallowing therapy on Tuesday. What should I tell Courtney our SLP?"
"Tell her that I would like to remove the tube."
(my eyes immediately fill up)
"Okay. What if they disagree? Do you supersede them in decision making?"
"Well, if they disagree, I would like to have a conversation with them about it. Maybe they will want to thin out her liquids more before we pull the tube. What consistency are you at?"
"We are on 7oz. of liquid to one packet of honey consistency."
"Let's see what they think in terms of timing, but Sloane has proven to me that she doesnt need it anymore. It doesn't have to be pulled tomorrow, but we are almost there. Great work, mom."
(now, I cry)
"Thank you! I can not believe it! One last question, do I continue with the 2 tube feeds of milk each day?"
"Yes, why don't you until we talk again."
"Okay, I will call you next week with info from our swallowing therapy appointment and then we see you next month for our 2 year appointment."
"Talk to you next week, Take care!"
"Bye!"

I can not compose the excitement I have. I immediately call my hubby, who is away in a distant land, to share the news. He, too, has relief in his voice. If you know him, you know his excitement does not present as mine. HA!! His is the more mature, reserved grown up kind. Mine is the more giddy, 10 year old, doing cartwheels kind.

I spend the next hour dreaming about what it will be like to have the tube pulled before Sloane's 2nd birthday?? Can that happen? And then I flood my own head with questions. What will Dr. Rahbar and Courtney think about pulling it? Will they slow the process? Will our surgeon, here at Hasbro, agree? What will we do as a family to celebrate the end of ONE part of our journey? The feeding tube is a HUGE part of our journey, but it is not removing it is not the end of our road. Sloane still needs to learn to drink liquids in their natural form. We have months and maybe years ahead of us working on thinning out her liquids. Saying bye bye to the mickey button will be amazing, but giving Sloane a glass of water without hearing any coughs or chokes will be the ultimate gift.

I know I have to get my thoughts together for next Tuesday. I need to focus!!  I have not spoken to Courtney since the swallow study, so she is not aware of lots of things:
1. that my ped dropped the volume of the tube feeds down (after her colleagues at the the nutrition clinic raised them) in an effort to get Sloane to drink more by mouth. YIKES!
2. that my ped does not have an overly huge concern about Sloane not desiring milk/does not want to force her and that her primary fluid is water. OH BOY!
3. that I took it upon myself to allow Sloane to use a cup with a straw, rather than a sippy cup. UT OH!
4. that Sloane is drinking many more ounces daily since Courtney has last seen her. thanks to our  ped dropping the volume in tube feeds. YEAH!
5. that we are only 1 more ounce of liquid away from moving onward and upward to the nectar consistency. YAHOO!
6. that our ped wants to pull the tube. HOLY SHIT!!!

So, to pull the tube? Yes or No? That answer folks we will not have for a week or two. But in the meantime, if you too feel the excitement, do a cartwheel for us!!!!