Ports and Plastic Surgery

We've had two more appointments in the past two days. And we are now followed by yet another discipline!! UGH! Our appointment Wednesday was with our general surgeon. Hands down a fantastic man! I really like him and he has pulled our little one through four surgeries now, one of which was a seven hour sugery he performed entirely himself to repair Kaitlyn's poor torn and lacerated bowel last summer, and he did her nissen then as well. That was the most exhausting surgery I want to have to go through until someday she needs something done about the curvature of her spine (which right now is fine). We went to see him about placing a port-a-cath in Kaitlyn. A port-a-cath is a tiny medical appliance that is placed under the skin. A catheter connects the port to a vein. The port then sits just under the skin and can be palpated and used for central venous access.

This is an example of a central venous access device.

What does this mean for Kaitlyn? It means that Kaitlyn would never need to feel another needle poke! A blessing!! The skin over the port can be frozen with a gel then a needle would access her port without her ever needing to feel another poke. Our surgeon told us that Kaitlyn does have other options for access, but they aren't good. He said he can still do cut downs in her right arm and he still has her external and internal jugular veins to use. He also has left her subclavian veins but doesn't feel as comfortable using these as there is a risk of puncturing Kaitlyn's lungs. He has avoided the jugular veins in the past saving them for future port lines he figured she may one day need. You see once these sites are accessed via cut downs they can never be accessed again, or at least usually cannot, the scarring prevents it!!

So what are our choices...not good! Kaitlyn's right leg is inaccessable for any lines. She has had a total of four veinous pokes and one arterial poke! She also has extensive collaterals in her right leg from past blood clots. Her left leg has been accessed a total of three times and has also had blood clots but we were able to save the leg for future access with four months of twice a day blood thinner injections. However the attempt to place a central line in the left leg this past hospital stay probably means that the left leg is inaccessable now too. Kaitlyn's left arm is inaccessable for any future lines! This leaves us Kaitlyn's right arm, and she would have to endure cut downs in order to gain any access. You see Kaitlyn has also been rendered inaccessable for PICC lines! CRAZY! This kid has the worst access of any other kid I know! We also have her external and internal jugulars which oce accessed cannot be accessed again! So the only option that makes a whole lot of sense is to have a port surgically placed so that we have permanent access to Kaitlyn's central venous system.

SO you might be wondering what's the big deal, why wouldn't you elect to save your daughter from future stress, pain, discomfort, physical and emotional trauma?? Well it's extremely risky choosing ANY surgery for a nueromuscular child. It also really sucks that we have to take our perfectly healthy daughter in and put her through more surgery. Ports also come with their own list of risks. And then we have Kaitlyn's tendency to clot. The last thing we need is for her to form a blood clot around this device and break off that close to her heart!!! Sooo....our next appointment is with haemotology for a discussion about blood clot control. Once we are reassured that we have a plan in place to deal with potential clotting then I feel like we will probably choose to place a port.

Our appointment today was with a plastic surgeon about the breakdown on Kaitlyn's right ear. She has had this breakdown since December and while we have been attempting to treat this condition, until just recently we weren't having a lot of luck. It wasn't until I made Kaitlyn some ear pillows that she really started to heal. Now she never goes anywhere without one of her little pillows! The surgeon didn't have any further suggestions except to keep off-loading on that side :oP But he did think that our idea for the pillows was the best solution for keeping pressure off of her ears. YAY!

These are the ear pillows that I made for Kaitlyn. They help keep all the pressure off of her ears.