The Whole Story: Part Fourteen - A Soft Discharge


(A couple of gifts awaiting me at home. A zebra pillow pet from my husband and flowers from my Grandma)

    In hindsight, I would say that I had a “soft discharge” from the hospital at the end of May. On Wednesday, the 24th, I got to go home. That Friday, the 26th, I met my in home IV nurse who came to visit every week to change my dressing and draw labs. She was a bright spot that I looked forward to every week as she was pretty much the only visitor I had apart from my mother. It can be very lonely and isolating healing at home.

    The next day, Saturday the 27th, I woke very early in the morning around 1:00 AM with terrible nausea that led to intractable vomiting. When this did not get better by the time my husband woke for the day, we called and the doctor thought it would be best to come in to the ED. This worked out well for a number of reasons, one of which was that I was running very low on green bags. So low, in fact, that I had been rinsing and reusing them. My husband and I both thought this was untenable, so unbeknownst to each other we both got on Amazon and ordered more. Now, I think we have a lifetime supply!

    Once in the emergency department, they did a CT scan to check my ventricles and a series of X-rays to check the shunt catheter pathway and make sure it was patent. The best part of this? They let me take my pillow pet through the CT! They were not satisfied with how my ventricles looked, so they adjusted the setting on my shunt, assuming that had at least something to do with the nausea I was experiencing. In the ED, they had been able to give me IV anti nausea meds that stopped my vomiting. I was pretty dehydrated and so they put a couple of bags of fluids into me, and some potassium as well. Once I was all patched up, they sent me on my way home!

    A few days later, on the 30th of may, we headed back into the city for my post op appointment. Everything seemed to be healing fine and so it was time to take out the sutures and the staples. I was not looking forward to this! It wasn't quite as bad as I had expected, although having more than a dozen staples taken out of your head doesn't exactly feel good. This was the point at which things had begun to go downhill after the first brain surgery, so we were a little on edge with this appointment, but everything looked great!

    A few more days later, on June 2nd, I woke once more with terrible nausea leading to intractable vomiting. They had sent us home from the emergency department last time with medicine that would melt in my mouth so it was more likely to take hold before I lost it but it still wasn't doing the trick this time. We tried every trick in the book, every medicine at our disposal, and waited as long as we could. Finally, at the height of rush hour traffic on the worst traffic day of the week, we headed into the city. Still, though, by the time we reached the emergency department I couldn't face 7 to 10 hours of being trapped in a small dark room and the frustration of very little to show for it, so as we pulled into the drop off area, I talked my husband into turning around and taking me back home. We made it 30 to 45 minutes down the road before I received calls from both my neurosurgeon’s office and the infectious disease doctors who both urged me to return to the emergency department. So, at the next exit, my husband turned us back around into traffic, and we spent the next hour or so working our way back towards the hospital. They ran the same series of imaging they had done the week prior, but this time both my ventricles and the shunt catheter looked good, so no adjustments were necessary. Different from the previous week, though, they were unable to get my vomiting under control with the IV meds. Around 1:00 in the morning they threw in the towel and decided to admit me. It took another 15 hours or so before they were able to get the vomiting to stop. Once they did, though, the hospital seemed ready to send me home. We were not quite ready for that though! After spending the last two weekends in the emergency department, we wanted to know what was causing this. We didn't want it to get that much worse next time.

    My theory at the time was blaming the particular IV antibiotic I was on. The nausea had gotten distinctly worse once I had left the hospital, and this was when I had started that antibiotic, so that was where my theory came from. I had been discussing this with the infectious disease department leading up to this hospital stay. They had asked me to trial coming off of the oral antibiotic I was on for a few days, but that hadn't seemed to make a difference. They had called in a new antibiotic that my husband had gone in to pick up, but when he had done the counseling with the pharmacist, one of the side effects that came up was that it could damage your connective tissue. This was a red flag for him because I have a connective tissue disorder! When we brought this to the attention of the infectious disease doctor, he apologized profusely and said I definitely should not take that medicine. It is so very important to double check everything and not expect your doctors to always order the right meds!

    While I was in the hospital, they started me on a new IV antibiotic. After a couple of days there, we seemed to be able to keep my nausea under control with meds, and so all we could do was hope that the new antibiotic would make things better. That Monday, the 5th of June, we headed home.

    Two days later, on the 7th, a scab fell off of my incision and there was some moistness present. This was so reminiscent of the previous infection that we called right away. The doctor's office wanted us to come into the city so they could check it out in person, but when they saw it, they were not seriously concerned. Two days later, on the 9th, the situation seemed worse and they wanted to check it again, so we headed back to the city. This time they decided it was certainly an infection due to a stitch Abscess. The thing is, I was already on tons of antibiotics that they would have prescribed for such an infection, so they figured they would let those antibiotics treat it. The part that confused me is how I got an infection while on those antibiotics?

    After this, it wasn't until the end of the month that I had to go in for an unscheduled visit, all of my visits were regular appointments. You can see why I called it a “soft discharge" since I was back in the hospital every two or three days for the next few weeks!

Here’s the thing: Living in the moment can be exhausting, especially when you feel like you can’t plan ahead. Each week we had said, “This weekend we’ll get away to the beach so we can rest,” but instead we’d find ourselves in the Emergency Department one more time. Once we got to the point where we weren’t in the ED, the fear of its possibility kept us tethered to the area because we didn’t want to be too far away just in case. This season was draining, but it was shorter than it felt, and we were soon onto better things. 

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