Today was Hannah’s infusion day downtown. After another night of very little sleep (maybe 4-1/2 hours), I was able to get the kids on the bus for school and drove downtown to TCH for her infusion.
Of course, on this day, it was raining. What is normally a 1-hour drive to the Infusion Center turned out to be a bit over 2 hours thanks to the traffic. Hannah threw two tantrums towards the end of the drive, once in the middle of the dead-stopped freeway, of which I was trying to figure out how I am going to stop the car, get out, and calm her down. Finally, some part of the Mickey Mouse DVD caught her eye (second time watching it this morning), and she calmed herself down. The second time was in the parking lot of TCH.
But we made it.
We went through our normal routine of getting the IV done, throwing a tantrum because she is just in that kind of mood still, and getting her Cerezyme flowing through her body (600 units). Yay! Like usual, she falls asleep shortly after the infusion starts.
When she sleeps on me, I usually play on my phone or watch the TV that is there. I must have dozed off during her infusion holding her because I woke up, and we were both covered with a blanket! Apparently I had fallen asleep for over an hour, and the nurses just “tucked us in” (as she called it). I can’t believe I slept so long there!
I do admit, I felt better after that nap. However, I did go to the TCH food area and got a Diet Mountain Dew for the ride home.
Two more nights until Daddy is home!
I really feel for you about having to drive so far to treatment, it’s hard, it really is. Kyle has his first in-home infusion with his nurse last Thursday, and it was incredible! Everything went so smoothly and Kyle did amazing. He was basically able to go about his day like usual, just with an IV line attached 🙂 I just have to pick up his Cerezyme here at my local hospital (10 minute drive) the day before the nurse comes and keep it in my fridge. They gave me a thermometer to make sure it stays at the right temp.
Is home nursing an option for you? I believe Genzyme is paying for his home nursing, because we don’t have to pay anything. They provide all the supplies, the nurse (plus a back-up one), and of course his Cerezyme.
I really hope everything works out for you with the move.
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Given how hard it is to get any rest at the hospital, you must REALLY be exhausted! Hurry up, Robert! 🙂
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That was so sweet of them to “Tuck” yah’ll in, it would have been a cute picture for sure. I know how you feel with hubby gone. Mine is gone a lot with military travel, usually its a week at a time and sometimes its long ones like the one coming up which will be a month. The sucky part of it is, its right before we are getting ready to move which means it up to me to square things away and get ready for the movers. I hate that part of moving more then anything.
My prayers are with you and your family. My son was diagnosed with Gaucher’s when he was 15 months old. He is now 18. He is a precious soul. I have a daughter that is 19 and she is disease free. We were so scared when he was diagnosed. We had never heard of this disease before. We have had many trips to the NIH and to see Dr. Schiffman. He is a wonderful doctor. Jeffery can not move his eyes from side to side or up. He rides RTV’s, 4 wheelers and hunts. I have always told him that he can do anything he sets his mind to. He is not afraid to try anything. We are now in the process of learning how to drive a car. ( Prayers are needed for mom here). He is doing great. He is a junior in high schools and is making good grades. He has resourse English and Math but all other classes are regular classes. His teachers love love love him. He has taught so many of us life lessons. Jeffery said that God permitted him to have this disease to show others that it is okay to be different and you can still be “cool.” He is a wonderful boy. I am so proud of my babies. I thank God everyday for them. Our prayers are with you and your family and baby Hannah. Please give her hugs and kisses for us.
Glad that someone was watching out for you! Hang in there sweetie!