I am happy to report that today we wasted a trip to the ER! I'm not being sarcastic either, I'm actually quite happy that it was a wasted trip and that she appears to be just fine!
Madi has been very off the last few days. She is fussy, gets upset easy, is very tired all the time, is restless and not sleeping good, is eating but doesn't have her same appetite, keeps complaining of her left eye hurting (she has a VP shunt on the left-hand side), and is just not herself. She hasn't had a fever, though, and no throwing up (except for once last night), so I started worrying about the possibility of shunt failure. After talking to the neurosurgeon's office, we decided it would be best to go in to the ER and run a shunt series to make sure her shunt is functioning ok. I had called while she was napping (she has been asking for a nap, which is so not like her!), so let her sleep a little bit longer and then headed down to Phoenix Children's Hospital.
At PCH we were admitted quickly and answered all the normal questions they ask. Next they sent us for a big bang MRI. They let me get in the machine with her, which makes me so very claustrophobic, but she did a great job laying still, and the test only took about 5 or 10 minutes. She wasn't a huge fan of all of the random noises but really did wonderful. Next we went over to x-ray to check and make sure her shunt placement looked good. I asked them not to test her blood, since I'm not worried about anything other than shunt failure at this point, but did ask them to culture her urine, which came back clear.
Our neurosurgeon, Dr. Shafron, came in shortly after we got back to the room and said her MRI and x-ray looked good. Her shunt is still placed well, it's not caught on anything, there's lots of tubing left, and her ventricles look stable. He said that what we don't know from the images is if her shunt is functioning well or not. That's kind of the question right now. While he was in the room, I got to discuss Madi's degree of scoliosis with him, which was nice. Unless we have to see him sooner, we will follow up with him in six months after getting another set of x-rays, and then try, again, to figure out if we should de-tether her spine or not.
The ER doctor said that there are a few viruses going around that they are seeing in the ER. Madi's symptoms do not match what they are seeing, but they said that a virus could just be manifesting differently for her. The other option is that she is in the early stages of shunt failure, where her shunt has not failed yet, but is also not functioning well.
They gave me the option of staying the night for observation or going home. I opted for going home, but have Madi in my bed so I can keep a really good eye on her. She still sleeps in my room anyhow, because of her seizures, but usually sleeps in her toddler bed. She was starving by the time we left, as he had been NPO (nothing by mouth) for so long. I had brought her a granola bar, but it just was not enough. After we left the hospital I took her to Whole Foods so she could get the gluten and dairy free pizza there that she loves. I ate my veggie sandwich, she ate her pizza, and we were both happy girls! She didn't finish her pizza, which again is odd for her, but she was a happy girl!
I'm praying this is all just a virus and passes quickly. I'm thankful that we are home and that her shunt most likely is just fine. Hopefully she will improve quickly and be back to her normal self soon!
Madi has been very off the last few days. She is fussy, gets upset easy, is very tired all the time, is restless and not sleeping good, is eating but doesn't have her same appetite, keeps complaining of her left eye hurting (she has a VP shunt on the left-hand side), and is just not herself. She hasn't had a fever, though, and no throwing up (except for once last night), so I started worrying about the possibility of shunt failure. After talking to the neurosurgeon's office, we decided it would be best to go in to the ER and run a shunt series to make sure her shunt is functioning ok. I had called while she was napping (she has been asking for a nap, which is so not like her!), so let her sleep a little bit longer and then headed down to Phoenix Children's Hospital.
At PCH we were admitted quickly and answered all the normal questions they ask. Next they sent us for a big bang MRI. They let me get in the machine with her, which makes me so very claustrophobic, but she did a great job laying still, and the test only took about 5 or 10 minutes. She wasn't a huge fan of all of the random noises but really did wonderful. Next we went over to x-ray to check and make sure her shunt placement looked good. I asked them not to test her blood, since I'm not worried about anything other than shunt failure at this point, but did ask them to culture her urine, which came back clear.
Our neurosurgeon, Dr. Shafron, came in shortly after we got back to the room and said her MRI and x-ray looked good. Her shunt is still placed well, it's not caught on anything, there's lots of tubing left, and her ventricles look stable. He said that what we don't know from the images is if her shunt is functioning well or not. That's kind of the question right now. While he was in the room, I got to discuss Madi's degree of scoliosis with him, which was nice. Unless we have to see him sooner, we will follow up with him in six months after getting another set of x-rays, and then try, again, to figure out if we should de-tether her spine or not.
The ER doctor said that there are a few viruses going around that they are seeing in the ER. Madi's symptoms do not match what they are seeing, but they said that a virus could just be manifesting differently for her. The other option is that she is in the early stages of shunt failure, where her shunt has not failed yet, but is also not functioning well.
They gave me the option of staying the night for observation or going home. I opted for going home, but have Madi in my bed so I can keep a really good eye on her. She still sleeps in my room anyhow, because of her seizures, but usually sleeps in her toddler bed. She was starving by the time we left, as he had been NPO (nothing by mouth) for so long. I had brought her a granola bar, but it just was not enough. After we left the hospital I took her to Whole Foods so she could get the gluten and dairy free pizza there that she loves. I ate my veggie sandwich, she ate her pizza, and we were both happy girls! She didn't finish her pizza, which again is odd for her, but she was a happy girl!
I'm praying this is all just a virus and passes quickly. I'm thankful that we are home and that her shunt most likely is just fine. Hopefully she will improve quickly and be back to her normal self soon!
So happy with her pizza!!
She requested to fall asleep laying on me... such a sweet snuggle bug!
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