Emptiness Turns to Hope
I have been spending a lot of time processing our visit to Nationwide. I don’t really know what to think of it… It makes me feel lost in this tornado when I try to decipher what everything meant. To say the least, it did not go at all as I expected.
At Nationwide I was able to have my colonic manometery done. It was very similar to the AD manometery I had done about a month ago! The test itself took around a full school day. It was rather uncomfortable since I was so sore from the scope and medications they gave me for the test. I always find it so fascinating to be able to see just what my body is capable of. Let’s just say, I am beginning my passion for the medical field a bit early, haha!
|After I finally got all settled into the testing room!|
Afterwards we met with the doctors. Once I left that appointment I felt very confused and lost… I was informed that I was no longer a candidate for the gastric pacemaker, they would not operate on the part of my colon they discovered does not work, and they cannot help me there. I was rather stunned when they told me that I needed my NJ tube back in and I should be eating… I have been craving for being fed through my gut ever since I got my PICC for TPN… I have been craving eating full meals ever since I fell violently ill in November… It was a very emotional experience to say the least. They met with their team of doctors for a long time trying to work out the puzzle of my case. They came up with no answers and no explanation for my gastroparesis.
My Mom and I drove home the next day of that appointment filled with emptiness. We were so confused and distraught. My whole plan for my digestive tract had just changed drastically without any reasoning behind it. To be honest, we felt irritated and angry. That afternoon while trudging along the long car ride we called our GI nurse. We told her that our experience left us lost. We explained to her how we were wishing to hear back from our doctor about what to do.
That afternoon my GI doctor called. We told him everything that happened, and for the first time all day, we felt reassurance. He voiced how starting NJ feeds right away is not a feasible thing, nor is eating full meals again. He filled us with hope. He made us feel comforted by saying things like “I am glad we have each other”… “All hope is not lost”… “I am your advocate”… “We will figure this out”… That is one amazing doctor right there. If it was not for his care and determination, I do not know if I would be here today.
Now I know what you are already thinking: “What is next?’… And quite frankly that is what we are all wondering too. For now, we are going to continue with my TPN and IV fluids throughout the day. My UW GI doctor is planning on calling some autonomic specialists to see if my autonomic dysfunction may be involved at all. We are also going to explore other routes of trying enteral feeds… The NJ tube was something I do not wish to ever have long term again. We are hoping that either this week or next week we will hear a plan from UW. And tomorrow, we go back to hematology to check on that pesky blood clot that is causing me to do twice daily shots in my abdomen.
With all of this going on, I did have a miraculous moment. This weekend my whole family was home, together. That has not happened in a very long time. My weekends lately have been filled with hospital stays and ED trips. Not this weekend though! It is one I will definitely treasure. I was also able to see one of my dear friends dance, and it was stunning to say the least. Of course, before that I had to go out with one of my other amazing friends to Bowl of Heaven… Yummy! I am so grateful for my family and friends, they really give it their all to make me feel like a 16 year old girl.
For now, we wait and hope. I am praying that we receive some clarity in these upcoming days to rid this emptiness I feel. I do have a favor to ask: prayers. I would be so appreciative if people could say a prayer for my GI doctor at UW. For guidance, for knowledge, for wisdom. I am a very complex case, and he is determined to provide me with the best quality of life. As I pursue becoming a doctor, I can only hope to be half as caring as he is for my patients.