First At-Home Infusion

First, I wanted to share a cute picture from tonight. The animals seem to have taken over our bed. Tonight Robin decided to use VZ as a pillow and VZ didn't seem to care at all!

This morning I took Ryder to his gymnastics class and Ben stayed home with Zak because he still has a pretty nasty cough. When we got home I put the EMLA cream on Ryder in preparation for his infusion. This time we didn't use the Tegaderm because pulling it off seemed to really upset Ryder last week. After talking to other parents online I got a bunch of new ideas on what to use so we tried some out today. We put the EMLA cream on, covered it with a piece of plastic baggie I cut, and then wrapped SelfGrip Elastic Bandage around his tummy to hold it on. Zak felt left out so we put some regular lotion on his tummy.

After the cream was applied we made a trip to BJs for a few things. The cream needs to stay on for at least 1 hour before the infusion so it worked out perfectly. Once we got back home I got everything set up and ready to go. This is a picture of the pump all set up with the Hizentra and tubing in place.

I took of the elastic bandage and wiped off the cream. Then I had him lay down on the couch so I could clean the infusion site and put the needle in. He was fairly calm since we didn't have to rip off the Tegaderm this time. He laid there whining a little bit and eating a cracker while I placed the needle. I did still use the Tegaderm over the needle because we need to make sure it stays securely in place. Then we wrapped the bandage around him once again.

The other day Zak & I bought some prizes and made a prize bin for infusion time. I told Zak if he behaved and helped keep Ryder calm during the infusion he would also get to pick something out of the prize bin. Today they picked out a whale, a starfish, a dolphin, and a crab to play with and that seemed to keep them pretty entertained.

The actual infusion took longer this time, but I had been told that many factors can effect how quickly the infusion goes. Last week it took about 15-20 minutes and this time it took about 40 minutes. I think the main factor is that the warmer the infusion site the quicker it goes. Our house is cooler than the clinic and he didn't wear his shirt for most of this infusion. After the infusion was done we took the bandage off and I snapped a quick picture of the needle...

Taking out the needle seems to be the worst part in Ryder's mind. He whines about it and tries to talk us out of taking it out, but we didn't put up too much of a fight. Zak was standing with him telling him it was ok, was pretty cute to watch. We know that taking the needle out does hurt more than putting it in because his skin is numb when putting the needle in (from the EMLA cream) and when taking it out the infusion site is extremely swollen. After taking the needle out Ryder got one of his special band-aids he picked out at the store the other day...Toy Story of course.

The next two pictures are trying to show just how swollen the infusion site is right after the infusion is done. Once his body gets used to the process this swelling will go away within hours, some people say they don't even get the lump at all after a while. Last week it took Ryder 3 days to completely get rid of the swelling and pain.

This week I decided to give Ryder Tylenol during the infusion in hopes that it would help alleviate pain from the swelling after the infusion. It seemed to work wonders because he hasn't really complained about pain at all. During the actual infusion he did grab at his site a few times, but the rest of the day he has be! Overall, this week went much better than last week in the clinic and I hope it continues to go well!