It's Time...

Wednesday, October 29, 2014

It's time.

It's finally time to make a change to a more permanent feeding solution. As much as I'd like to admit it's not necessary, it truly is.

She has figured out the ever so delicate skill of removing her NG tube in the blink of an eye. With each and every reinsertion we run the risk of nasal ulceration, laryngeal injury, and pharyngeal discomfort. The NG tube may also precipitate gastroesophageal reflux, which can lead to aspiration; a major concern for us with Everly as it will turn into pneumonia.

As we continue to work on her oral motor skills and speech therapy, her swallowing of milk via mouth and solids are most assuredly negatively impacted by the presence of the NG tube. It is thought that she will react more positively to oral stimulation once this noxious piece of equipment is removed once and for all.

In meeting with her GI doctor yesterday, it was mutually decided that removing the NG and moving forward with the PEG (percutaneous endoscopic gastrostomy) is the absolute best option for Everly.

For any other "typical" child or even adult who is in need of a feeding tube (non-NG), the procedure is in and out really. However, in Everly's case, it's not as cut and dry.

The biggest concern was, is and will be for us how she handles the intubation and extubation. Again, "typical" children with "typical" anatomy, breathing patterns, brain connections will handle breathing on their own again just fine. She, however, may do well but there is a risk that she may not. As much as I DO NOT want to take this risk, we know we are also taking a risk by keeping the NG tube. It's not meant to be a long term solution.

Love. Her. My goodness!

When we first spoke about getting a more permanent tube, we really thought she would not make it, following the experience of our doctors at the time, but a short amount of time. However, at this point, we need to respect how well her body has done, God's obvious plan for her life and the advice of our trusted medical professionals. We have spent 8 months researching this topic, time discussing the procedure and plenty of time praying for God's guidance in making the final decision. We are at peace with the decision.

So, to briefly explain how this will work, what we know and what we don't know. I won't bore you with too many medical terms that will just go through one ear and out the other unless you're personally invested in this topic. Tomorrow is Step 2: have an Upper GI completed which consists of x-rays of the pharynx, esophagus, stomach, and upper small intestine. The series shows how your digestive tract is functioning and is used to diagnose ulcers, tumors, hiatal hernias, reflux disorders, and many other conditions of the upper digestive tract. Once completed, the radiologist will write her report of the findings and send it off to the GI doctor.

Step 3 is to meet with our cardiologist since she is a heart patient. They have their own team of anesthesiologists that the cardiologists prefer to use from what we were told. So in meeting with our cardio, we can address our concerns related to putting her under anesthesia and how it will affect her heart.

Step 4 is waiting to hear back from the GI who will have read the upper GI findings AND consulted with our cardiologist about the best plan of action for her.

Step 5 is scheduling us to come in for pre-op (not day of or even near) to go over what the upper GI showed her. If it showed her that Everly's stomach is malrotated then doing full surgery to place a low profile button will be the choice. That is a week stay and is much more of a major procedure just in that it is not endoscopically. We will also meet with the pre-op anesthesiologist and he/she will discuss how the procedure will go specifically the protocol for Every. If there is no malrotation present or any other causes for concern, the procedure can be done endoscopically which is less of a hospital stay.

Love my three kids' costumes!

The biggest question will be what kind of G tube can they place in Everly's stomach. There are a few main types. The low-profile would be placed if she must have the procedure surgically. While the longer tube selection would be inserted through her mouth and into her stomach endoscopically. Our hope is that the surgeon can bypass placing the longer tube choice as we would have to take her in again when she weighed 20 pounds to have it changed to a low profile one. If her anatomy is correct and all is well when he gets in there now, he may can just proceed surgically mid-procedure and place the low profile tube which we are hoping for. This means that it would be all done and over in one procedure with only 2 additional hospital days as opposed to coming back next year (if that's when she hits 20 lbs) and going through this again.

Step 6 is to schedule the procedure while the GI and our cardiologist work behind the scenes to find the right people to work in Everly's situation.

Step 7 is surgery day when we meet with the actual anesthesiologist who will be in the operating room and the GI doctor. We will be allowed to hold her following and also to stay with her overnight (love to see them tell me for the time she's healing.

Talk about dressed up!

There are many questions still left to work out based on what they find in the Upper GI tomorrow and even when they have her the day of surgery. For me, not being able to have it all planned to a T and know each step in full detail...unsettling to say the least. I know God has, is and will be watching over her and helping guide the surgeons as they work on her. Faith can take you far, that's for sure!

So for prayer requests: that her upper GI finds nothing out of the ordinary, they are able to complete surgery with no complications and that she is extubated easily, and that she is able to have the low profile G tube placed at this time.

Sleeping beauty

A shout out to the Scholes family in Texas who recently celebrated Elisabeth Maxine's 6 month birthday! She's moving just like Everly...up, up. up! We are in awe of how well she's doing, too. I watch the strength of her family, including their Aunt Bees (shout out to you!!!) who is ever present, and am just amazed at them and the joy that they are living. Their E also has Trisomy 18 and is moving mountains! She's also on Caring Bridge so check her out if you'd like to see the cutie!

Joshua 1:9

"Haven't I commanded you? Strength! Courage! Don't be timid; don't get discouraged. God, your God, is with you every step you take."

With love and appreciation,

Crystal (will keep you updated about this)

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