Her IV is in her right arm and the meds are in the backpack
This was the biggest smile I could get.
I knew that ELMO backpack would come in handy!
Just chillin!
We had our first home infusion on the 26th and it went great! Lyn is the owner of Ambulatory Infusion Care http://ambulatoryinfusioncare.com/ She is so nice. She came to this infusion to train our nurse Chelsea. Chelsea is so great. We had no idea what to expect and we lucked out! She is 24 and works in Saginaw at Covenant in the ER. It was also her first time doing a home visit. They were here about an hour going through paper work and "rules and regulations" before the actual infusion started. Wade was home for this one too so he held Avery for the IV start. Chelsea did it and got it on the first try! I warned her that Avery was a bleeder and boy this time was no exception. Wade had a hand full of blood and also a huge spot on his shorts. Chelsea just didn't have anything in place to absorb any of that blood. She felt so bad. Our reaction....WHO CARES!! you got the IV on the first try! I was able to distract Avery with my phone and she didn't shed a single tear! The time during the infusion was pretty much the same as it was at Children's. Keep Avery entertained with whatever it takes. We watched TV the whole time..and Avery ate basically the whole time too. She is able to walk around more freely than at the hospital. We put the meds in a backpack so she can play and walk around and just bring it with her. This is gonna take some getting used to for her. I'm sure in no time she will grasp the fact that she can actually move around and play and do pretty much whatever she wants. Chelsea has to do her vitals every 30 min just like in the hospital... Blood pressure, temp, and oxygen. It took just over 4 hours for the medicine to finish then a quick saline flush and she was done. Chelsea had to stick around for 2 hours after the infusion to make sure there were no reactions. This is how it will be for the whole clinical trial for Lumizyme.
All in all, it was a relief to not have to drive to Detroit, that saved us 2 hours right off the bat. My feelings were still the same..a little anxiety, nervousness and a sick feeling until we got the drug going. I'm not sure if this feeling will ever go away. She will always be our little baby having to go through this and face this horrible disease and I am not ok with that. I'm hoping they fade a little because she is so brave and amazing and it really doesn't seem to even bother her. Our next infusion will be the 5th of July..this gets us back to our normal week and schedule.
