Finally, Home Nursing on the Horizon |

Finally, Home Nursing on the Horizon

Posted by Melissa | Filed under Treatment

Ever since Kyle was diagnosed and the idea of home nursing was presented to us as an option, I have been pushing for it. His bi-weekly treatments are something he has to have for the rest of his life, and the older he gets, the more disruptive the long drives and days at the hospital are going to be to his life.

One of the requirements for home nursing was to have a port surgically implanted, something I wasn’t too keen on. Kyle has awesome veins in his hands, so never once, did the nurses at the hospital have a problem getting his IV going. But…because there would only be one nurse coming to the house, another wouldn’t be able to step in to get the IV going if there was ever a problem, and Kyle would miss his treatment. We can’t have that.

So in November we went through all the appointments necessary to proceed with the surgery – the consults, x-rays, etc., and he had his surgery on the 18th. It was one long day. He had his infusion done in the morning, and while he was getting his flush, we went down to get checked in for surgery, and wound up sitting there for 3 hours because they were behind schedule. We didn’t leave the hospital until 8:30 that night, but everything went smoothly with the actual surgery.

The incision healed perfectly, and we haven’t had any trouble with it at all. Here it is on his chest:

It’s really not the big deal I thought it was going to be. They said he can use that port for up to 10 years before it has to be replaced, but I guess only time will tell. The nurses gave me some freezing cream and covers to put on his port, so that when they access it with the IV he won’t feel anything. And I’ve found that I really like it because it frees up both his hands for our time at the hopsital, where before, he couldn’t do anything with his one hand because they had to wrap it all up so he wouldn’t play with it. Now the IV line is out of the way.

Last week, I met with a lady named Donna who informed me that she is the one coordinating the whole process. She said there is a lot of red tape and paperwork to make it happen, but she said she hopes to have the nurse who will care for Kyle at the hospital next Tuesday. That means she will be there to observe everything, from how the Cerezyme is prepared, to using his port, and throughout the entire process. Then hopefully after that, it will be a matter of a couple of weeks.

I just received a fax with the paperwork that needed signing to enroll Kyle in the Cereyzme Home Infusion Program, so it’s been signed and faxed back. So I really hope from here on out things will move pretty quickly.

It’ll be so nice for Kyle to be at home, and comfortable for his treatments, so his life doesn’t have to be more disruptive than it already is.

3 Responses to “Finally, Home Nursing on the Horizon”

Tina Says:
February 24th, 2010 at 11:05 am

Awesome news!!! Finally starting to get things moving in the right direction again.
Bonnie Says:
February 24th, 2010 at 1:21 pm

That’s great news Lis. One less thing to lessen the stress and make everyone more comfortable.
Cristina Says:
March 3rd, 2010 at 1:17 am

I am so happy that his surgery went smoothly! It looks great! And, the added comfort and security of getting the treatment at home is sure to be worth it! Yay for Kyle!

Cristina’s last blog post..25 Million+, It is time to care about rare disease.

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