As I write, I’m watching the sun rise over the city from the 22nd floor of Mass General Hospital.
This was supposed to be an amazingly happy update. Full of good news. But no such luck. I promise that the next post will be happy!
Without any sugar-coating, the last week has been rough on us.
Last Monday began with an early morning urology appointment. Without going into too much embarrassing detail, it was bad. Apparently, my bladder is shot which is why I’m so prone to bladder and kidney infections.
Wednesday was supposed to be an amazing answer to all our prayers. We made the early morning commute to Boston to go to Tufts where I see my gastroenterologist. As you likely already know, I have gastroparesis. My GI doc performed a procedure to deliver a shot of Botox to my pyloric sphinctor, a ring of smooth muscles in the stomach that separates the stomach from the small intestine. The best way I can explain it is this: the pyloric sphinctor is like an automatic door. When you press a button (or have food in the stomach), it automatically opens. Because mine is essentially paralyzed, it doesn’t open on cue. Therefore, Botox aims to disable the mechanics and just keep the door open.
The procedure itself was seamless and simple. I was sedated (yes, with Ketamine again) and a scope was placed down my throat so they could inject the Botox in the proper muscle group. I recovered nicely though not without some mild nausea. I wanted to get home to my own bed so they discharged us after an hour in recovery.
Then the “fun” began. That night the vomiting started. And it didn’t cease. After I vomited all the contents of my stomach – including bile – the dry heaving began. Any and all food, liquids, and medications that went in rapidly came out.
Now this isn’t too uncommon for me. I go through cycles where I vomit uncontrollably. Usually, I spend a day on the bathroom floor and I’m fine. But this never ended.
Because I have a strange aversion to the hospital (not sure why…) and I’m incredibly stubborn, I held off until Sunday afternoon without letting Keith take me to the hospital. I must have looked horrible because I was rapidly escorted to the back and given a bed and 2 liters of saline and 4 mg IV Zofran. My urine was a mess and I had low Potassium. Also, my heart rate was going wild. When it was obvious that I wasn’t leaving that evening, we began talking about admitting me to another hospital where I under the care of more doctors. Thus, I was transported with medics to MGH.
While at MGH, they gave me more saline and a potassium bolus. My EKG was all over the place and my blood pressure (usually insanely low) was above “normal” (for a healthy person, that is). And I was miserable. There were tubes coming every which way and all I could think about was my nice comfortable bed at home so we talked ourselves into leaving.
At home, however, I was getting worse. I still couldn’t keep down food or liquids and I was obviously dehydrated. After speaking with my metabolism doctor – a monologue filled with admonishment – I was carted back to MGH. I spent a couple hours in the ER before being escorted to a private room in my beloved Phillps House.
I spent the night at status quo. After a CT scan, they discovered that my bowels were severely impacted. In went the NG tube (I look like an elephant, by the way). Unfortunately, I am still vomiting up part of the liquids administered through the NG tube, but we’re hoping it’s still effective.
And that is currently where I sit. I’m on fluids with regular Potassium boluses and medication round the clock to keep me from getting too nauseated and dehydrated and to prevent blood clots. So far, only the blood clot medication has worked, but I’m still optimistic. 😛
There has been quite a bit of talk since I’ve been here about what’s causing my guts to go so wrong and what the next step is, but instead of speculating on the unknown, I’m just going to enjoy the beautiful sunrise over the Charles River.
Still Miles to Go 