The Hospital Roller Coaster Ride

I usually really like roller coasters. The twistier, scarier, and more adrenaline-rush-causing the better. I have decided, however, that I really don't like life's figurative roller coasters. In the midst of a struggle, it seems that every once in a while life tosses you some hope and then it's all dashed in a matter of moments with one sudden event. Then, you get to the worst part, where you think you might just lose your lunch, and there's suddenly a little more light and a little more hope again. Not that I'm ungrateful for the hope and the light. It's those miracles and blessings that makes our struggles and burdens easier to bear. I think it's just frustrating because the figurative roller coasters seem to be awfully long rides sometimes. What if I don't want to "keep my arms and legs in the car at all times"? I want to get off....

Last week, Thursday, September 29th, we checked Sarah into Primary Children's Medical Center. She had been really sick with a "stomach flu bug" (we thought) since the previous Sunday. I took her to see her pediatrician on Wednesday afternoon, worried that she may be getting dehydrated. With her diuretics and PLE, I wasn't sure how far to push her before we did something about it. We had blood drawn and an exam, and went home with some zofran (anti-nausea medicine) and waited for lab results. The doctor called back, close to 10 p.m., after discussing with cardiologists at PCMC what should be done. Her albumen levels (4-6 for normal people, should be at 4 for her) were down to 1.6. By the time we got her to the hospital the next afternoon, she was at 1.3. When she was so sick 3 years ago, her levels dropped to 1.2. The difference this time is that she hasn't been sick for months before doing something. But, her protein levels are about the same. Anyway, we checked her in for an overnight stay to receive some albumen infusions, with the hope that raising those levels would counteract the symptoms (swelling, diarrhea and vomiting) and calm things down in her gut. The problem, however, came with the fever she keeps spiking around 102 up to 103.4. The infectious disease team was called in to see what they could find. After days of stool, blood and urine samples, everything they tested for came back negative. They checked for things like urinary tract infection, bacterial infections in her blood, rotovirus, salomomonilla, listeria, and so many more I don't even know what they were. After several days of testing, growing cultures, and waiting for results, everything has come back negative.

The gastrointestinal team was called in a few days later (notice we are checked in for an extended stay now) to see if they could help explain why symptoms were not letting up with elevated protein levels. They recommended an ultrasound to see if she had an excess of peritoneal fluid in her abdomen that could be infected. It didn't show an unusual amount, so "tapping" it was kind of discarded for a bit. Yesterday, a whole week after our arrival, and the day following another fever spike, they did a CT Scan with contrast to see if her mal-rotated intestines maybe were twisted or pinched, causing the vomiting and diarrhea. They were also checking for arteries that could be clamping and pinching the bowel (because with her weight loss, she's probably lost most of the fatty tissue that protects the intestine) as well. Results of that test said that things seemed to be functioning "normally" without any blockages of any kind. That was a relief, but still left questions of what's causing the fever. They decided to treat the fever like any bacterial infection and gave her an IV antibiotic, hoping that in a day or two it will just fix the problem without explanation (because there might not seem to be one...).

So, here we are, 8 days since admission, still waiting and trying to fix what's wrong. She has improved, throughout all these tests, and probably just through the passing of time, her symptoms have changed from the original "stomach flu" style of symptoms with nausea to more of a PLE "rejection" type of  vomiting without the nausea. So, we're still here, unsure of whether those symptoms (diarrhea and vomiting) is PLE or if it's something else, but doing our best to help her heal, be comfortable, get some nutrition in her, kill the fever, and get her home.

Today is one of the best days we've had since we checked her in. She's felt pretty good, gone on a few walks, and actually kept food down all day! That's a huge milestone...it's been almost 2 weeks since that's happened. So, as I sit here telling this story, we're filled with hope and smiles today that we're headed a good direction. Maybe we're at the "tummy-tickle" part of the ride. I hope and pray in the coming days that the fever will go away with the antibiotics, and the food will stay down so we can all be home together again in just a few days.

We've had some really special times together trying to cope with the emotional and spiritual struggles that come with such an experience. We're so blessed to have my mom taking care of the other children so we can both be here with her. Steve's work has been so good to be flexible and just cover things so he can be where he needs to be. It's been such a blessing to have us both here so we can each take turns being strong enough for the other two. Steve had an wonderful experience with Sarah in the "Meditation Room", and Steve and I had a sweet healing experience on a walk and in the "Angel Garden". I can't imagine how we would be handling things without these incredible blessings. Between all the prayers and the opportunity to be here together, we've learned so many things and grown spiritually. We've learned more about the difference between wearing a "mask" and putting on your "game face", what "courage" really is, experienced and shared tender mercies, and studied and learned more about the Atonement of our Savior and His infinite grace.

I'd like to say that the roller coaster ride is over, and that we're finally getting off dizzy, giggly, and happy to be back on the ground. Not sure when that will happen, but on a day like today, I have hope and faith that it will be whenever it's supposed to be. Our loving Heavenly Father is in charge. It will be over as soon as He thinks it should be. We're where she needs to be to get the best care possible, and with all the love and prayers we've felt, I know He must be waiting to bring us great blessings.