Time for a new port

Nora will be having surgery first thing tomorrow morning to have her original IV port removed and a new one placed on the other side of her chest. We knew this day was coming sooner than later but we didn’t expect it to be quite this soon when we took Nora in to see Dr. Crooms this week. The last few times I accessed her port (put in a new needle) it felt “shallow” and Nora’s skin covering her port has been looking thinner and thinner. When Dr. Crooms looked at it he advised that it be replaced rather quickly since the skin had gotten so thin from growing, stretching and frequent needle sticks even though the port itself is still working fine. This is a very common thing that happens with ports and if the skin gets too thin it can actually pop leaving an open wound with and exposed port, which obviously would be a very bad thing.

Nora’s new port should last longer than her first one since she was just a tiny 2 month old baby when the first one was put in. She has done a dramatic amount of growth in the last 2 years and that is a very good thing even though we wish we could avoid her needing surgery. Even though we can’t help but be a bit nervous with our sweet Nora girl going under tomorrow, we realize how very fortunate we are that Nora hasn’t had to have surgery of any kind in over 2 years. And the fact that she will be in Dr. Crooms’ hands brings us a world of comfort. Even though port placements are usually done as inpatient surgery for children Dr. Crooms wants to send Nora home tomorrow afternoon to lesson her chance for infection.

Did I really say that things were medically boring around here just a few weeks ago? Well as soon as those words flowed from my finger tips to the keyboard Nora’s eating took a nose dive. Just like any typical 28 month old toddler, Nora has decided that there are far more interesting things to do besides eat. Even though we love for her to act like any other toddler her age unfortunately she does not have the luxury of this phase. She went from being a wonderful eater to barely taking a bird bite of anything and is not willing to drink as much Elecare. We’ve tried all the tricks to get her to eat more, but Nora stands true to her zodiac sign Taurus and can be very bullheaded when she wants to be. Her weight is dropping, her labs have seen better days and as of this week she’s had a scary amount of ketones in her urine (which can be a sign of malnourishment). So after discussing this with her GI docs we’ll be adding another day of TPN back until Nora decides to start eating better again. So starting next week Nora will go from 3 nights of TPN a week to 4. We wish this wasn’t the case but at the same time we are counting our blessings and know that 4 nights a week still isn’t very much and we are thankful to have TPN to help her through.

I’ll end this post with sharing some pictures of Nora and her new buddy Cynclaire, her second cousin from KY who visited last week. Nora took to her immediately and they had a great time playing and having a tea party. Nora shared some of her favorite snacks, even though arrowroot cookies and rice crackers were a first for Cynclaire she was a good sport to eat them with Nora even though they weren’t as exciting for her. 🙂