Trouble w/port

tell him to keep his chin up. hopefully it will go better tommorrow. I know there are times when I feel the same way as Kevin does (I feel like Job from the Bible sometimes) icecream makes me feel better–o.k. I digress. tomorrow will be a better day!
mj

Oh Dawn ~ I am so sorry for you and Kevie! It is so “unfair” 😮 Just know that I care and send hugs 🙂

Poor Kevin I know at some point in his future he will be able to look back on this time in his life and say “it was the pits but it made me who I am today” but it’s really a bummer when you are a kid because time passes so much more slowly.

A few weeks ago my husband and I went to visit my brother and his family. At one point I looked out and my husband was standing up in the tree house pelting my nephew with marshmallows while my brother was lobbing marshmallows back up to my husband as quickly as possible. It was hilarious and it’s impossible to get hurt with a marshmallow even when you get hit directly in the eye, plus they are biodegradable and pretty cheap! Anyway, I got a big kick out of watching them nail each other and even went out and took a few swings at some with my cane, no I didn’t hit any, I wasn’t that coordinated even before I got sick.

I highly encourage fun, hillarity and silliness – I think it helps you forget you are sick and have other challenges. OK, but if you are tempted to get the Silly String – hold off on that… I’m still picking it off the bushes outside and it’s been almost a year… NOT biodegradable!!!

Take care Dawn and go get some marshmallows. :p

Dear Dawn:

My wife had a port installed for her chemotherapy and it is constantly getting clogged up. There are drugs that they can prescribe to wash out the clogs in the port. A lot of times the port clogs because the previous time it was used, they didn’t do such a good job of flushing the port. You may also want to look into wether Kevin has a double port or just a single port. Double ports can cause some additional problems and it is hard for a nurse to tell if a port is double or single if it is the under the skin type.

The ports can work pretty well, but the people who flush the port after the last infusion need to really be good.

Lee

it is all in the flush after the port is used but some nurses are just better at accessing them. Me I was stubborn when we had two nurses in a row that couldn’t do it I decided to make them show me how to do this and I got certified to do it myself. There is a range of the amount of heparin to put in the port after use I always went with the higher end which is why we never clotted off and it was so much easier to access each time. Kendal’s lasted for 3 years longer than they expected it to. Guess I must have done something right. Hope you and Kevin have things go better soon.

When can we have something go right ??? I hope things are going better and he doesnt react to the IVIG.
Poor little guy.

Connor is reallllllly into Star Wars and he cons me into buying him stuff all the time…he asks to go to Walmart alot and if I go without him, he’ll ask that I check the Star Wars isle and call him to let him know if there are any new guys. He has quite the collection already . Same goes for when he was in to Thomas and Cars and Pokemon. He still plays with all of that but loves the Star Wars a whole lot right now.
I guess what I’m saying is I can relate to the trip to Walmart making him feel better and its ME that has CIDP. Making him happy makes me feel better.
I cant imagine your frustration sometimes.

Keep up the good work Mom….Kevie is a special lil guy with a very special mom.

How did the paint balling go ?

hugs to you both.
Stacey

Glad to hear it went better the second time! He sure has the problems…. I like the trip to walmarts….I think a reward is a great idea! The ports are still a good thing its just too bad that more people don’t know how to use them. Can you request the second nurse to come each time? I have the same nurse that gives my IVIG and another that does my chemo. Each is good so I don’t have any complaints but they get it on the first try. Let us know how the IVIG went. Thinking of you and Kevie…..