but in retrospect, I’m still exactly where I was yesterday.
I finally was able to touch base with the genetics nurse coordinator yesterday afternoon. Basically, she wanted to know if Hannah would be a “good stick” for the IV based on “my experience.” She hasn’t had that many IVs in her life, thank goodness. She had the one when she was a newborn where the did the platelet transfusion whe was two days old. That one was in her hand. Then, there was the IV placed in her head for the IVIg transfusion; I think that was six days old.
She has had quite a few venous blood draws. All of the ones done at the clinic downtown were easy and successful on the first try. However, the one time we had it done at a lab up by our house, it was a nightmare. Obviously they didn’t have experience with infants because it took 3 different tries on two different days. It was ridiculous, and I was ready to walk out of there and drive downtown to get it done had the “chief phlebotomist” not been able to do it that last time. In the future though, we are doing all venous blood work downtown.
The reason she asked was because she was working on setting up our Home Health pediatric nurse who is going to administer Hannah’s Cerezyme treatments after the first one, which will be done in the clinic so they can watch for side effects. I honestly can’t picture Hannah sitting there for two hours with an IV drip. Fortunately our Home Health nurse (which is covered by our insurance just as if it was done in the clinic) should be very well experienced with IVs on a baby.
Then we talked about the port issue. She was under the impression that we were vehemently against it. She must have had us confused with another set of parents, because it is definitely something we are considering, as it would make it much less painful for Hannah every two weeks.
She asked what days would be good for me for Home Health. I told her Monday, Wednesday, and Friday since I have Little Girl A home with me on Tuesdays and Thursdays. I would hate to waste one of those days with her home for IV treatments because she is going to be starting Kindergarten next year and won’t be allowed to have any stay-home days during the week.
So, information was exchanged yesterday, yet I still have no clue when we are going to even start the treatments.
A port would definitely be an awesome idea!! Josslyn used to have a PICC line and I’d give her her steroid treatments through that and then she’d get labs drawn off of that as well. A weekly dressing change is WAY better than lab draws! I hope that her treatments can start very soon! It is a slow process as you can tell already..