Dani has a very rare genetic disorder call Hurler's Syndrome or MPS I. Its part of a group of storage disorders called Lysosomal Storage Disorders. You can find out more information at MPSSociety.org You can see the first part of her journey on danicaboni.blogspot.com. This is the beginning of a new journey.
Thursday, March 31, 2011
Day 3 - Hospital (Hip Surgery)
The orthopedic nurse Amy and the anesthesia team have been in this morning. Dani's temp is 100.9 and she looks a bit pale so they are checking her blood draw from last night and we possibly could have to do another one this morning. Her epidural will come out today and also her catheter. They are going to start her on two oral pain medications. I will fill in the names when I get them. She is acting find and wanted cheese bread (grilled cheese) so I ordered it and hopefully we can get something substantial in her stomach. She had a cherry popsicle, chocolate milk, and a few animal crackers yesterday. Just so I get as much information on here as possible last night her heart rate got as high as 164 and this morning it is still in the mid 150s - 8:45 am
Her blood transfusion is done and the majority of her meds for a bit also. She asked for sausage pizza and hopefully she eats it. - 6:45 pm
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Bella's heart rate stayed in between 130-170's while we were inpatient. I'm praying she continues to recover!!
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