Today evening John received his first dose of the Synagis. First of FIVE doses over the next five months. On top of everything else that this poor kid has to go through he will be getting TWO shots each month. It's really one dose but has to be split in two shots because the dosage per kilo is more than one milliliter and only allowed to inject one ml in each thigh. Needless to say this was not a pleasant experience for John. The only good thing about this was that our insurance will pay for a home nurse to come in and administer the drug at home instead of dragging Jasiu to the doctor's office which is full of germs and sickness during this time of year we get to stay at home and still get this over with.
The Synagis is a drug and not a vaccine. It is an antibody that treats the RSV virus which can be extremely dangerous for a premature baby or a baby with many serious heart conditions like HLHS so a small dose of the drug should protect him if he was to be exposed to RSV and his body should be able to fight it easier.
So our drug insurance company mailed the medicine to us and set up a home nurse to come and administer the injection. The medicine itself were two tiny vials the size of a finger and the box it came in was huge and could easily fit four adult shoe boxes. Yes it had cold packs because this is a refrigerated drug but it seemed a little exaggerated. However, the drug without insurance costs around 2,300 so I'm sure they tried to package it so that it wouldn't brake in transit. 2,300 !!! that's outrageous and yes it prevents something very serious but it is still mind boggling to me the cost of medication. period.!They also shipped syringes and an additional drug called Epinephrine in case of an adverse reaction to the synagis.
Well the home nurse came in and it seemed like a big mess, she did not have a scale to weigh John, didn't know how much of the drug he needed, she had to figure out the dosage, which I had to correct (thank God I'm pretty decent in math and equations and am familiar enough with the whole mg/ml stuff) and then we were given only one syringe and needle for the shots which she informed me that after the first shot the needle gets dull, plus she had to first give the one shot and then draw up the other which takes a good minute, that's a minute longer that I have a screaming baby before another painful injection. Additionally, with all the commotion, I forgot to get Emily upstairs to her room to watch cartoons and she witnessed the whole shots thing with John so than she started crying hysterically that John was hurting and I had two screaming babies. It was not pretty. I'm sure it was terrifying for her to see and next month I will arrange for her not to be there or have someone upstairs with her so she doesn't have to witness this. Poor babies !
So tomorrow morning I'm calling the drug company to file a complaint about the needle and the whole issue with the dosage. They should know better and be better coordinated, we're not talking about something light here to me this is serious stuff and they should have their act together. That's all , I'm done venting now. Poor Jasiu was crabby the entire evening, let's hope he gets some rest tonight.
Tomorrow I have more fun stuff, Emily gets her booster flu shot and I finally go get MINE ! Wish us luck.