Welcome to Allison's Web Page. It has been provided to keep people updated about our Child. Allison has a Genetic Disorder called Mucopolysaccharidosis(MPS)1. For her treatment, we chose an Enzyme Replacement Therapy (ERT) called Aldurazyme. Allison gets a synthetic version of the enzyme she is missing by I.V. Her infusions last about 4 hours and are done weekly. Sundays are her usual infusion days! She will have these infusions every week for life or until there is a better treatment.
Journal
Monday, June 6, 2011 2:07 PM CDT
Wednesday June 8th, Allison will be having TWO procedures. Please keep her in your prayers! Allison will be having the mass removed from her Right ear and HOPEFULLY having a PE tube placed in that ear as well, and Allison will also be have a port replacement procedure done. We have had Allison’s port since 2003, before her first infusion of Aldurazyme. She has had 417 infusions through this port. Unfortunately, It is not working any longer. Two weeks ago, when I went to do Allison’s infusion, I accessed her port and there was no blood return and I could not push anything in. We went to the hospital where Dr. McDonough ordered TPA to be put in the port and left the TPA in until the next morning. Her port worked OK after the TPA, but still not well. We did her infusion and went about our week. Last week, I accessed Allison’s port, and there was blood return but it was very hard to push fluids into. I was able to flush the port though so we went ahead with the infusion. I was hoping that it would flow better as the infusion went on. We started, and it went ok initially, and Allison’s infusion rate was ramped up over the first hour ending up at 64 ml/hour. Within 5 min at the top rate, her pump started alarming with a high pressure reading each time it sent fluid in. I ramped the speed of the infusion back down until the pump no longer alarmed with every push of fluid. We ended up doing the whole infusion at 34ml/hour. It was a very very long infusion, but I was able to get the Aldurazyme in her. When her infusion was done, I flushed her line and put Heparin into it. It was much harder to flush than it had been when we started. While I was pushing the heparin in, I noticed she was infiltrating… and when I drew the needle out of her port, much of the heparin (I would assume) came dripping back out. We went into the clinic this week and had an infusion nurse access Allison's port and try to put TPA in again so that we could get one more infusion into Allison before her surgery, and once Allison was accessed, she yelped in pain when the nurse tried to push any fluid into the port. We stopped immediately,and took the needle out of the port, when we did that... the fluid shot straight out from under Allison's skin!! BROKEN PORT...yuck
Please Please keep Miss Allison in your thoughts and prayers on Wednesday and through her recovery from these procedures... Intubation makes us very nervous and is very risky for our girl! Thank you!
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