8 Days in Hell

Well, my poor little baby's luck finally ran out. All this time, we felt so fortunate that Lauren has had so few medical and other problems since her diagnosis with Williams Syndrome. We finally had a crisis last week that made me that much more grateful that she is usually quite healthy.

It started Friday, the week before Thanksgiving. She began vomiting in the morning, and it lasted all day, without her ever even wanting a sip of water. I knew she was dehydrated by that time, so we headed to the ER at Genesys Hospital in Grand Blanc for some IV fluids, thinking she would be fine and able to come home by morning. Well, she didn't improve, so they admitted her to run more tests, find out if there was an infection, and continue the IV fluids. She had tested positive for Strep throat, but since she was still vomiting up to 30 times per day, they started to think something else was going on. By Sunday, she wasn't perking up, and was still vomiting, and they weren't able to diagnose her other than the strep. Then she had a very scary, very bloody diaper when she passed some stool. The doctor assured me it was just an infection, not to worry, but it would take 24 hours to run cultures to find out what infection was causing it. I asked if she needed an xray or ultrasound to see if something more serious was happening that required surgery, but I was told, "No, it's nothing surgical, just either stress from being sick, or an infection that will take 24 hours to diagnose." That night, her discomfort increased, while the vomiting continued, and I was starting to get really scared that she wasn't being properly diagnosed. She was in so much pain by this time that she was writhing, rolling around, trying to get comfortable, and begging me to help her. It was excruciating for her, and almost as excruciating for me to watch. I was so upset, in the middle of the night, twice I brought Lauren out to the nurses, asking, "Please, isn't there something you can do? Is there something else you can give her for pain?" They practically ignored my cries for help, saying, "Sorry, all we have on order for her is Tylenol." Finally, morning came, and as soon as the doctor got there and realized how much pain she was in, and after another horribly bloody diaper, she was able to diagnose her correctly. She had an intussusception-an area in her small intestine that was sliding into itself, like a telescope. They said it was probably from the strep infection causing enlarged lymph nodes in the bowel. They tried twice to use a barium enema to "blow it out," but it was unsuccessful. They said surgery was necessary, and the xray definitely showed an intussusception. If they had listened to me earlier when I asked about an xray, she would have been diagnosed a lot sooner, and it would have spared her a lot of pain.

So they were going to do the surgery, and as per procedure, we were having a consult with the anesthesiologist just prior. He said, "I will be the one to be honest with you. You don't want your daughter to have this surgery here." Wow, thank God for his honesty. It turns out this hospital had no specialists, no pediatric radiologist (who should have done the barium enema), no pediatric surgeon, and no pediatric ICU in case something went wrong, which was possible considering she has a heart condition. So they sent us back upstairs, to try to figure out what to do with us. Thankfully, they had given Lauren morphine, so she was a little more comfortable, but we were desperate for her to get the surgery over with, so the intussusception didn't become life-threatening. So they called the one hospital nearby that they knew should have a pediatric surgeon, only to find out he retired and has not yet been replaced. Then we had to wait over two hours for the University of Michigan to let us know if they had a bed for her. They never were able to give us an answer, so the doctors didn't know what to do.

During all this time, I had been in touch with Lauren's pediatrician, Dr. Martin Levinson, on the side, because he was not a physician at the hospital where I took Lauren. I just took her to the closest hospital, thinking all she would need was IV fluids. Well, as soon as they wanted to admit her, I should have packed up and left for Beaumont Hospital in Royal Oak. Then Dr. Levinson could have cared for her, and they are a full-service specialty hospital. I had been keeping Dr. Levinson in the loop, because he is WS-knowledgable, and I didn't want her misdiagnosed due to her WS. Let me take a moment to praise Dr. Levinson! He gave me his personal cell phone number, and told me I was welcome to give it to anyone caring for Lauren. And as soon as I told him they didn't know what to do with Lauren, he said "Let me call a pediatric surgeon I know and I'll call you right back." Well, he had it set up so fast at Beaumont, I can't tell you the relief we felt.

They had to transfer us by ambulance, and poor Lauren was so listless, it was heartbreaking. She just lay against me, whimpering, the 45 minutes it took us to get to Beaumont. But once we were there, though we were afraid for her to have surgery, we knew she was in good hands. They were so wonderful and reassuring, and you could tell they knew what they were doing, and not just trying to figure it out like at Genesys. Her surgeon was Dr. Winston Chan, and he was so kind and confident. We were just sobbing, and he said,"Don't worry, I know what I am doing, and she will be fine."

And she was. It took her a couple of days before she started to perk up, which was a long time to wait and still worry. But on Thanksgiving day (how appropriate), she was able to finally smile, and play a little. I was so relieved! Then, after a full week of no eating or drinking, she started to act hungry. We had to start slow, but she didn't want to! She ate a whole single-serving box of Cheerios. We were able to take her home Friday, the day after Thanksgiving. She is a little thinner, a bit sore, and looks a bit like she has been sick, but otherwise she is just great, and is so happy to be home!

We got the pathology report back from the bowel resection, and it turns out the intussusception was caused by something called a Meckel's diverticulum. It's a bit of tissue that's a remnant of when she was an embryo, when the umbilical cord was attached to the small intestine. Usually the tissue goes away as you develop into a fetus, but in two percent of people, it remains, and in two percent of those people, it causes problems, so it's quite rare, though not unheard-of. When the bowel senses there is something there, usually sometime before the child turns two, it tries to pass it through, but since it is tissue that is still attached, it causes intussusception. So technically it is not WS-related, though our kids tend to have kinks and quirks, so I can't help but wonder if having WS made her more likely to be susceptible to this kind of thing. I guess we'll never know.

So, though it was a terrible Thanksgiving, we still have so much to be thankful for. Little Lauren is recovering well, we now know to never take our kids to Genesys hospital, and we are so thankful to have such a wonderful pediatrician like Dr. Levinson. Now we look forward to having a wonderful Christmas...