Port placement

Since finding out about Noah's diagnosis, I just knew Noah would need a port placed for the upcoming/long-term weekly enzyme replacement therapy (ERT) infusions. For those who don't know what a port is, it is a device that is surgically placed under the skin and provides access to larger veins for intravenous (IV) medications. It is good for people who needs constant IV access. Noah's Dr. wanted to wait on the port until he's received at least 4-6 ERT infusions without any reactions. So we waited...until we couldn't stand to watch Noah suffer while the nurses took turns sticking him for an IV. He was initially scheduled for a port placement in November along with bronchoscopy, removing his tonsils and adenoids, and an ABR test, but that's 4 weeks from now. We really didn't want him to go under general anesthesia any more than he needs to (he's high risk for airway issues), but he missed his 5th ERT infusion due to multiple failed IV insertions. FYI, we asked for the PICC nurse to help or a hospital IV team, but they denied our request. Anyhow, he'll finally get a port in this coming Monday.

As an Operating Room nurse, I've seen plenty of these implanted as well as removed for all ages. It's considered a minor surgery...until it becomes your own kid getting it done. Not only you want to make sure it's done right, but now you have to take him home and watch out for all the risks this foreign body can cause. For example, we'd have to take Noah in to the ER if he has any fever because of possible infection. Looking at Noah's history, he probably had fevers every 3 weeks before turning 2 years old.

Despite this dillema, we hope we are making the right decision to have it placed sooner. We do know it'll be better for Noah. He started to recognize the place and the people in the infusion center and you can see his mood change from good to bad. We hope all will go well. But until Monday, we will enjoy our time in Palm Springs. :)


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