My husband was home for the weekend, having driven up from LA straight after work. Four hours on the road, and then he gets to take care of me, changing the sheets, seeing if I want my one bath per week, trying not to sit on the bed because it jostles me and makes the nausea worse. He helped me shoot up my IV meds—zofran and Benadryl, and was getting ready to help switch out my TPN bag and tubing, something we had to do every 24 hours because I needed constant nutrition.
He went to do the dishes, and that’s when the chills started. I was curiously not nauseous, for the first time in a long while, but my body was shaking so violently I don’t know that I would have been able to feel the nausea over all the tenseness of my muscles. My skin was hot to the touch but I needed all the covers.
We pulled out the thermometer. 100.13. Could be nothing. To be safe, we called the home health nurse line. “Don’t take any chances, with pregnancy. Go to the emergency room.” We changed my clothes—foregoing a bra because underwire pressing on my growing belly made the nausea worse. Threw on a robe. Didn’t have the energy to do anything with my week-long tangled mass of hair. I hugged my little trash can, mindful not to vomit on any bit of my husband’s nice car.
This time we had to make a difficult choice. If something was seriously wrong, we were safer going to the hospital that was 10 minutes away. Where we knew all three OBs, and knew that none of them had experience or patience with my hyperemesis gravidarum. Or we could go to the hospital 40 minutes away, taking a chance on a brand new doctor who had only just agreed to try to treat me after we transferred my medical records to his office the day before (we had not met him yet, only knew that he listed “high-risk OB” under his specialties).
We took the risk that I wasn’t going to die immediately. I would have driven hours out of the way if I thought I had a chance of getting a doctor who didn’t just keeping saying there was nothing more he could do as I wasted away, potentially harming my baby with repeated and prolonged descents into dehydration.
We got a bed by 2 am or so. They shot me up with more zofran and Benedryl, and pumped in two liters of fluids. They were busy, or understaffed, or something. I was ignored a lot of the time. My temperature was down to 99.7, and they weren’t concerned (never mind that my normal hypothyroid self usually clocks in around 96-97).
I sent my hubby to sleep in the car, because at least one of us should be getting some rest. The ER doctor came in a few hours later and said, “Okay, well, looks like we can let you go home.” Never mind that the nausea hadn’t abated at all, that I was still throwing up, and that I’d come in with a fever. I very respectfully said that if he sent me home like this I would be back in a day, two at the most. I knew I wasn’t back up to the level of “maintaining” the misery at home. He heard me (thank the gods) and got on the phone with my new, unmet doctor.
It took another couple hours, but he finally came back and said maybe they should really check for the possibility of infection in my PICC line, because a good 60% of PICC lines develop complications like that.
Around 8 am they moved me to a room on the floor with the more intensive-needs patients. Fall risks, people who needed to be watched closely. My roomie was a college freshman, her mom sleeping on a cot in the room. Sure, the other hospital would have put me up on the Labor & Delivery floor so that I wasn’t getting sick from anyone nearby—but maybe this new doctor would be worth it.
What followed was an entire week of different treatments, just trying to get me back to some semblance of okay.
The blood cultures said yes, the PICC line was definitely infected. They switched my antibiotics twice, finally settled on one that would directly attack the particular kind of bacterial staph infection I had. The antibiotics helped get rid of a UTI that I felt coming on—small wonder, with my body so dehydrated and inept at flushing out toxins.
Curiously, it took almost a full day from the time we had confirmation of the infection to when they actually pulled the PICC line out. I wasn’t in any shape to be arguing, but I did worry through the haze of nausea and continued vomiting that maybe it should have happened sooner.
Even fully hydrated and with my potassium replenished, I was still vomiting quite often.
Some questionable things happened, maybe not due to negligence, but just the sheer number of different nurses I had over the span of that week. We are all human, and make mistakes. I was at least lucky that none of the nurses were intentionally cruel or negligent to me.
You never want to insult a professional by telling them how to do their job. But I had to remind a surprising number of nurses to push my IV meds in slow. When straight zofran hits your system all at once (pushed straight in an 8 mg dose), you get the most horrible taste in your mouth and feel like if your organs could move on their own they would all jump straight up your throat at once. For something that normally stops the urge to vomit, it was startling for it to make me feel like I was being turned inside-out. IV Benadryl is pretty caustic to veins, so you have to push it slowly and you really should dilute it in a saline flush. Some nurses couldn’t be bothered with that, and 25 mg of Benadryl hitting your system at once makes the entire world spin and you feel like you might faint. With those two, plus my antibiotics and the solumedrol steroids we were trying, my IV thyroid medication plus the PPN and lipids and vitamins in those—it was pretty important to flush the line with saline in between meds. One nurse neglected to do that, caused a reaction in the line, and then I had to go a full 6 hours without meds because she couldn’t risk double-dosing me, even though I knew that I hadn’t gotten any of the meds. They also managed to overlook for a good four days that my PPN and meds should NOT be going into the same IV site. PPN is tough on veins, as were all the meds I was on. It’s now two weeks post-hospital as I write this, and I’m still waiting for a large and painful lump in that vein to subside.
Thanks to the fast-pushing and no-dilution action of many of the nurses, a vein on my other arm remains enlarged and painful to the touch. I told my husband I can recreate the burning feeling of getting IV meds just by pressing on that vein—though without the happy consequence of actual medication entering my body.
Without the PICC line my doctor wanted me on a feeding tube. PPN isn’t sustainable long-term, so I guess it made sense, except my vomiting was already subsiding thanks to the solumedrol. Getting a feeding tube put in when you already feel like vomiting every minute is, well, it just multiples the horror and discomfort. I’m supposed to accept it gracefully, because I and my child are still alive. It was just difficult to do so when a whole new pain began as soon as the tube was in.
I spent days trying to convince the nurses and doctors that it was a new and legitimate pain, that something was wrong. I imagine it felt something like if you had a nice, open ulcer in your stomach lining, and the metal bit at the tip of the feeding tube found it and decided to sit there and rub against the lacerated bits constantly. I can’t prove that to be the case, but suffice it to say feeding tubes aren’t supposed to cause that kind of abdominal pain, and I couldn’t decide whether the pain or the nausea was worse to live with.
Finally the solumedrol helped enough that I started forcing myself to keep down yogurt and ice cream. I took careful note of how much I ate and drank, to prove to the nutritionist that I would do absolutely anything to get the feeding tube out.
After a few days (and curiously only about four hours of actual use as a feeding method, because they still had the PPN running), I finally got the tube out and my stomach pain subsided.
I had to stay until they had run a full five days of the correct IV antibiotic, but I needed that time for the solumedrol to really do its work anyway. I got sent home with a prednisone taper, zofran, benedryl, prilosec, and my trusty thyroid meds.
We aren’t over the hump yet. Tomorrow is week 17, and only 50% of women with HG see a lessening of severity some time between weeks 16-24. Tapering the steroids brought me back to “just as bad as before,” so we had to increase my dose for now. Every week I wonder when my doctor will have to put his foot down and say we have to stop the steroids, no matter how bad I relapse. I guess prolonged steroid use is harder on a body than feeding tubes, dehydration, and constant vomiting, though I find that hard to believe.
Every month of sickness with HG typically takes 1-2 months of recovery time, and I’m not even in the recovery phase yet. I miss going to work and being part of my team. I miss being self-sufficient, able to cook and clean and launder for myself. I miss being a normal wife, sharing responsibilities and not having to demand so much from my nonetheless loving and willing husband.
I don’t know if I will have to go back for another hospital stay. So much depends on how long this lasts and how long my doctor lets me stay on the steroids (the ones my previous doctor said he would never ever prescribe to me, because I think he’s scared of lawsuits even though we know the steroids won’t hurt the baby as long as they happen after ~week 10-12 of the pregnancy).
At the very least, even facing the possibility of another feeding tube and maybe six more months of this torture, I now have a doctor who cares about me. He will not let me or my baby die. He has experience with treating HG, and he keeps up with the current research. He made it so that this struggle no longer contains a strong possibility of my death (along with baby, because baby is too young to survive alone yet).
The psychological toll is still mounting, but it does help to finally have a doctor I can trust.
You can find the other posts in my series on hyperemesis gravidarum here.