We did get off the "roller coaster", the very next day. Late Saturday night, Sarah was released from the hospital. We went home with strict orders to watch and monitor her fevers, keep in touch with the cardiologists, and follow up with her pediatrician within the week. It was so very wonderful to be home together! Sarah was still pretty sick, but we did our best to keep her comfortable and keep track of everything. Thankfully, we still had another week of Fall Break for the boys and me, so I got to be the nurse and mommy while Steve worked and we tried to get back to "normal". I called to schedule Sarah's follow-up for the following Friday, and they didn't have any room for her that day. So, we scheduled it for Wednesday morning instead. By Tuesday night, I looked over the careful notes we'd been taking of her "at home" vitals, and realized that things really weren't getting any better. She still had little appetite, and the other symptoms were much the same, if not worse. We headed to the doctor in the morning, and he confirmed those thoughts. He ran blood tests again, and told us that she seemed even worse than when he sent her to the hospital two weeks earlier. He told us to go immediately to the hospital (in Pocatello) where they would get some IV antibiotics and more maintenance fluids in her. She was to be flown (by the Life-Flight helicopter) to Primary Children's again, where the experts were that could help her.
So, I guess, we were forced back in line for another ride... It was a different roller coaster this time. Same amusement park, but a different ride. As we boarded this "same, but different" ride, I thought, "I really don't want to do this again...". It has been a different ride, with more hope and success, more support and company, and also more frustration and tears. As we're (hopefully) drawing near the end of this second ride (day 12 today), I've decided I don't like this part of the park much. Most of the rides really stink.
* * * * *
On October 12th, we watched Sarah strapped into the helicopter and lifted into the air. Steve arranged for his sisters to meet her at the hospital when she arrived so she wouldn't have to be alone. She was stable, but it was so hard to see her taken from us again... just like when she was a newborn. When we had arranged everything and talked to each of the kids about going back, we headed to Salt Lake to find our 18 year old baby girl looking much better than when she left us. The next several days were kind of like a continuation of our last trip, but different in many ways. Instead of doing more searching for the cause, it seemed the teams of doctors were more concerned with finding a treatment. They decided the oral antibiotics she had been taking at home must not have been fully absorbed, so she wasn't getting the medicine in her she needed. They also started looking at some of the long-term things we could do to help her PLE, since the nature of the symptoms had seemed swing more to that disease. She stopped throwing up the day after she returned, and the fevers seemed to go away by the next Sunday. We were making progress.... The fever and white blood count, however, were still baffling.
I went home Saturday afternoon and stayed there with the kids until Wednesday afternoon and Steve stayed with Sarah. I was able to get some much needed time with my sweet ones at home, and also all 15 hours of work in at the school. While I was gone, it seemed Sarah just kept improving. Her cardiac team brought in Dr. Angela Yetman, who runs the Adult Congenital Cardiology Cardiac Program at Primary Children’s and the University Hospital. She specializes in adult patients with congenital heart defects. Kids with anatomies like Sarah's didn't used to live into adulthood, and now most adult heart doctors don't really know how to work with patients with such complex heart anatomies and complications. Apparently these same issues and treatments are different in adults and children. She immediately put the kibosh on a feeding tube, more albumen treatments, and the seriously low fat diet. She ordered iron infusions (to help with absorption in her intestines, slow down the gut, and raise red blood cell and oxygen levels) and a calorie count, giving Sarah the freedom to eat what she really wanted to, hopefully proving she could keep in enough nutrients to gain weight and be healthy again. I couldn't wait to return and meet this doctor whom Sarah has officially hired and seemed to turn things around because of her experience and expertise. If nothing else, it was a new (and welcome) perspective, and gave us a connection and starting point with an adult cardiologist.
Sarah was doing really well. Fevers had stopped, no more vomiting for a week, diarrhea was slowing down, and she was feeling really good. We were pretty concerned about how big her belly had gotten, but were assured that with all the swelling of her internal organs and the fluid that the albumen hangs onto, we'd need to be patient for quite a while before that would go away. With that settled in our minds, we were planning to be home on Friday. Then, late Thursday evening, there was another fever spike....
The doctors came in and delivered the sad news and my little angel fell apart. She was so disappointed and so homesick, she couldn't even really hear what the doctors were saying. Then, she wiped her eyes, and said courageously, "I really want to go home, but I don't want to have to come right back again. I'll stay as long as I need to to get better." It was a pretty hard morning for all of us, as we had hopes of being home with our whole family together again. Since she had a (new or recurring) fever again, they decided to go ahead and tap the fluid in her belly and test it to see if the peritonitis they'd been treating. (Everybody has a small amount of peritoneal fluid in their belly to cushion the organs in the abdomen. In the weeks prior, Sarah's hadn't shown up as an abnormal amount in the tests they'd run, so they hadn't tested it, but just treated it. They assumed that since everything else was negative, it was a logical deduction that her intestinal issues and swollen belly would contribute to that diagnosis.) When they checked on ultrasound, this time there was a serious amount of fluid in there. They took her in and tapped the fluid to test and removed 450ccs (almost 17oz) of fluid from her belly. It has made her feel better, and her appetite has really improved (more room in the tummy equals more calories in the tummy). We all feel much better about having had that done, and I wonder now if the fever was another tool of our Heavenly Father's to keep us here so they would go ahead with that procedure. Her fevers have continued the last 3 days at a low-grade level and now they're testing for common respiratory viruses to explain the fevers. If they come back positive, she'll be headed home, with a little "head cold", but knowing that the initial infection and issues are now better. More testing and more waiting....
It's Sunday again, and Steve and I are both here with Sarah at the hospital, hoping tomorrow will be the day. Waiting for cultures to grow can take a few days, and I'm worried that they'll want to have definite answers or no fevers for a bit before sending us home. Sarah is at day 29 of being sick, day 22 at the hospital and has had 35 pokes, with 11 IVs. I think it's time. But, I'm with Sarah on this. I really don't want to take her home until it's really time.... Heaven help us to finish this ride patiently.
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