Pressing the "button"

Friends,

Well, we have had quite an interesting couple of weeks with Elizabeth. She was doing great and enjoying the summer and all that it brings: her brother and sister being home more (which is always a wonderful thing!), being able to be outside (which she loves!) and soaking up the blessed chaos of a summer at our house. She was alert and responsive, chattering up a storm and making new sounds in her attempt to get a word in edgewise with Caroline and Michael. She was working hard on her physical therapy and seeing some results begin to form.

And, then, she decided to stop swallowing. No warning. No indication of problems with her stomach or her food. Just. Stopped. Swallowing. She wouldn't swallow her food, her medicine, any liquid. She was done with it. She would hold the food (with her medicine) in her mouth and refuse to swallow and then spit it back out. Now, she had done this before on a couple of occassions when she had a stomach bug, or her throat was hurting, but she had popped back to normal quickly (within a day or so). But, now, it was different. She was not "popping back" and there was absolutely no indication of any problems with her stomach or throat. Once we got to day three of this little rebellion, we knew we were dealing with something new.

Now, let me give a little bit of context about why we were amping up quickly on this. You see, Elizabeth gets all of her medications (two anti-seizure medications, liver supplement, anti-reflux medication, etc.) via her mouth usually mixed with her food. She doesn't like to take the medicine straight so we try to disguise it within her super-fortified mush. She has to have her medicine (in some form) five times a day. This means that she is usually eating something on a pretty strict schedule. Also, to add to the confusion, we have to give these medicines at certain times and within certain intervals or we risk opening up a window for Elizabeth's seizures to break through. It is a delicately balanced system that has worked for us so far, but, as we were now seeing with a bit too much clarity, it was easily succeptible to destruction.

Elizabeth's Spit-In began on a Wednsday. Once she was making it clear that she wasn't going to swallow, Kathryn and I kicked into our DefCon 1 mode and began to experiment with other ways to get her to swallow her medicine and minimal bits of food. At this point, we thought maybe she was just in one of her moods because of a throat thing, so we didn't yet consult with our doctor. We'd been here before and didn't see a need to panic. Kathryn began to slowly feed her small bits of food with medicine and found that if she held her a certain way, she could get miniscule bits of the medicine down. This was a laborously slow process. (what usually took twenty minutes when she was eating well, was now taking two and a half hours to get minimal medicine and food down...multiply that times five times a day and...well...I'll wait while you do the math...) Needless to say, by Day Three of this little joyride (Saturday) we were getting the message that we needed to get some more info. Of course, it was Saturday night and we couldn't see our pediatrician until Monday morning (we had the first appointment of the week already set up!). So, we called in the cavalry. Our dear doctor friend who has helped us out on many occassions was nice enough to come over and check her throat for obstructions or other explanations. Nothing was evident. No overt problems. So, back to the dripping of Gatorade and Depakote method. At about midnight on Saturday, we called Elizbaeth's speech therapist (who is simply awesome!) and consulted with her. She gave us some great tips on trying to get Elizabeth to swallow so that we could inch our way along until Monday. (Speech therapy consult on speakerphone at midnight on Saturday while dripping Gatorade into the mouth of a two year old special needs child...and you thought your weekends were epic!)

So, we sloughed slowly to Monday morning. Kathryn and I were constantly praying for a miracle. Stress was amping up. We try valiantly to not let our worries show too much to the kiddos, but Michael and Caroline are not stupid. They knew something big was going on. Caroline wandered around the house constantly saying prayers out loud to God as only she can, "God, it's Caroline. Let's get Lizzie Leigh to swallow, okay? She needs to be hydrated!" Michael was our little helper. He was always bringing Gatorade bottles to us to help with E. (Of course, he usually would take a big swig before handing it over, but we deeply appreciated it all the same!) Our family was working well in the crisis. I was proud of them.

Monday came and we saw the doctor. He confirmed that there wasn't anything obviously blocking her throat or anything medically causing the lack of swallowing. And, then we all knew where this was headed: The g-button. A g-button is a feeding tube that is surgically inserted into a person's stomach that has a "button" type port attached to the abdomen so that parents can feed a child via this button and make sure medicines and nutrients are able to be digested. It is not that uncommon and is used for many reasons with great success. But, Kathryn and I had been very hesitant to do it before now for a multitude of reasons (that's the subject of another blog post, I'm afraid!) Now, we had come full circle on it and saw the device for what it truly was: a rare chance for us to give Elizabeth a chance to thrive. An insurance policy for Elizabeth in case she tries this swallow rebellion again. And a medical breakthrough that would give Elizabeth some freedom to enjoy life instead of being married to a strict eating schedule.

Conquering any difficulty always gives one a secret joy,

for it means pushing back a boundary line and adding to one's liberty.

--Henri Frederic Amiel

Once we had a plan and a medical light at the end of the tunnel, we released just a little bit the tight grip of worry we had on this. Kathryn was nothing short of a ninja about feeding and had created a way to let Elizabeth get enough to stay hydrated and get her medicine down. The older kids were awesome helpers and acted as entertainment for Elizabeth while this process was working. (Elizabeth, ever the diva, was frankly relishing all the attention!)

So, I tenatively went back to work that afternoon to get all my stuff organized and prepare to be gone for the surgery. I am always the worst in the family to let the stress go, so I admit I was still pretty amped up when I got to work. I arrived in time to go to lunch with some colleagues. My mind was still focused on the surgery and all the implications, spinning and darting among the possibilities. While at lunch, I saw someone I barely know--I wouldn't even call them an acquaintance really-- and they overheard me talking to our table about Elizabeth's swallowing issues. This person, obviously uncomfortable with the subject, but wanting to stay in the conversation for some reason, said, "It must be just terrifying for you all to face that every day at home!" Um...wow. It never ceases to amaze me that some people are simply not actively using their mental filter! My initial reaction was not the most Christian response. Luckily, I activated my mental filter before actually suggesting to this village idiot why such a statement confirmed the existence of regressive evolution in East Texas. Instead, I just looked up and said that, in fact, it is the furthest thing from "terrifying" at our house. It is peaceful, happy, joyous. We are blessed beyond measure and this event, while seemingly frightening, is just another way that God is showing us the wonder of His creation of Elizabeth. It is another way that we can see that we have to give up the seemingly impossible tasks to Him and marvel at what He can do with them. The filter-less person obviously didn't grasp this in any form and proceeded to continue to verbally wonder about how we faced such a "constant terror" in our home. Simply astonishing. But, I also saw through that silly conversation that my response was not really for that person to hear. They were obviously intellectually overwhelmed by the need to breathe and walk at the same time.

Instead, it was for me to hear. I needed to really take in that all of this was truly a way to see clearly that God is in control and is taking care of Elizabeth in His own way. Do we want to have to give Elizabeth a g-button to eat? No. Do we wish there was another easier, less dramatic solution? Absolutely. Do we wish that we could just have "normal" problems that don't involve scary medical issues? Absolutely NOT. It sounds funny, but we are thankful we are exactly where we are with Elizabeth and our family as whole. It's not easy, but it sure is awesome.

So, we have now gone through the procedural obstacle course of barium swallow studies and surgical consults and have set up a g-button surgery. All the while, Elizabeth's eating has slowly gotten better. She seems to be "popping back" from this again. But, Kathryn and I are now undaunted. The message is clear. We need to do this for her and to prevent other incidents like this in the future. God has made this decision very obvious. We need to complete it. And, as ever, God was making His plan known through this process. He allowed Elizabeth to begin to eat again after we made the decision to get the g-button so that Elizabeth would be healthy and strong enough to have the surgery. He allowed us to have a wonderful surgeon who we trust be able to do the surgery. And, He gave us the blessing of being able to take a deep breath before having the surgery to allow us to truly know that we are making the right decision and tamping down the fear that we had about the "button". We know that we needed this time to show us (and Elizabeth) that our fears about the button and its implications were minimal in comparison to the liberty it would offer Elizabeth. And, too, I think it also allowed our faith in God to grow stronger and allow us to truly give Him our irrational fears. You'd think we would have learned a bit about this by now, but apparently, our learning curve is steep.

Faith is reason turned courageous.
--Sherwood Eddy

So, the surgery is scheduled for Monday, July 2 in Dallas. We look forward to updating everyone on how well this new device is allowing our sweet Elizabeth to thrive. We thank you for your thoughts and prayers that support each of us constantly. This journey is truly blessed and we are each blessed by you.

Matt. Kathryn, Caroline, Michael and Elizabeth Rowan