Monday, April 21, 2008

To PORT or not to PORT

I recently met a new mom who is trying to decide if a port is the right choice for her and her son. She will be checking in on this blog so please share your thoughts about ports. Also maybe you could share your story of how you decided to have a port or not.

I have three sons with severe hemophilia A. At the present time none of them have a port as they are 24, 13, and 11. They all have had a port at one time. My oldest did not have a port until he was about 11. My other two had their ports placed between 10 months and 11 months. I was not a believer in them at first.....but boy did I change my mind!

A port may not be right for everyone. I did find it easier and less stressful to infuse my sons who always presented a challenge to start an IV for infusion.

Thank you all for sharing!
Lori

11 comments:

Rhonda said...

thanks Lori for sharing

Rhonda said...

thanks Lori for sharing

DeAnn said...

Good evening

DeAnn said...

Hello, I have two boys with severe hemophilia A. They're 6 and 4 years old. They both have ports and it's the only way we know how to manage at this time. I believe ports have worked great for us, but each person is different. At one point our doctor wanted us to take the oldest ones out. I feel its easy for them to say what they think we should do, but we're the ones that deal with this issue at home day to day. With having more than one child with hemophilia, we need to do what works best in our household with the least amount of stress. Our 4 year old still fights us every time it's time to infuse.
Good luck

sarabean said...

I am sorry to leave this here. I am new to this forum and I can't figure out how to make a new post. I would like to introduce myself, but am not sure how. Can anyone tell me?

Thanks!

Sara

Lori said...

Hi Sara! Welcome to the blog! The way this blog is set up is that on of the Hemophilia Moms needs to start a new blog. Other moms can make a comment to any. I will start a new blog for moms to introduce themselves.

Once again....Welcome!!

Lori

Nichole said...

I went back and forth between getting my son a port or not at well. It took about 6 months from the original idea was proposed for me to finally make the decision to get it. Before the port my son was in the ER about 3 to 4 times a month and in ER it was another battle. The nurses ALWAYS had a hard time getting a vein, and if they did get one, it would ususally blow shortly there after, he was getting IV's all over him, in his feet in his arms and hands and he would scream his heart out at when they tried to find a vein. He would have to be strapped down to a table, or rolled up in a sheet with just one arm or one leg out because he would put up such a fight. After one particular bleed and trip to the ER i decided that the port was the right choice for him. Since he has had his port and been on prophi, the quality of his life has increased drastically! I have only had to go back to the ER twice since his port and it was only to have him get a cat scan. I am very for children getting a port only because I have experienced first hand the great benefits of it.

Meredith said...

I'm in the same boat as Lori and Nicole. When my son was just a week old our dr told us all about ports and how pro-ports she was and that she wanted to do it at around 9 months. That time came & went because I was too scared-for him to go through elective surgery and for me to have to learn how to do that. After visiting the er about 3x a week from 9 months on, my husband & dr finally convinced me to allow him to get a port. He was 2 yrs old. I CANNOT tell you enough how much it changed our life, and his! We went from constant fear/worry/concern about him being injured, or worse, from a bleed- to finally allowing him to "be a boy". I would have NEVER thought I could learn how to access a port and be successful at it, but I did...and after a pretty short while I could have practically done it blindfolded.
After 6 1/2 almost "piece of cake" years with a port, we are actually going through all of this again. His port recently had to be removed due to infection and our dr chose ( & somehow convinced me too) not to replace it but to teach us how to find a vein and start an IV. I seriously wanted to fold my arms, stomp my foot & say NO Way! But you do what you have to, even with a lot of fear and tears along the way. Then you realize, like we did with the port, that eventually it does get easier and you CAN do it. And one day, like today, it almost becomes easy again-and even one month ago I would have never believed anyone that told me I would feel that way.
And after all that fear and crying and feeling sorry for myself, I see the incredible little kid in front of me that is so very brave and has somehow learned to be completely unimpressed and unaffected by needles and pokes and band-aids (thank goodness:)!) And seeing him ok makes me ok.

seansmom said...

Now that my son has had his port for a month I can tell you it's already been such a relief. I never thought it would be so easy so fast. All of you ladies told me I would be doing it with my eyes closed in no time and you were right!! I would defiantly recommend a port to anyone who is thinking about it. Just knowing that Sean is being infused regularly, especially now that he is trying to walk (ahhhhh) is the best feeling. All of those bumps and horrible bruises he would get before the port are now nonexistent. I just feel like my kid is as normal as he can be now.

Meredith said...

Hooray for you seansmom! I am so glad for you, and especially for your son, that you went ahead with it so quickly! It only continues to get easier:)!! Hope you're sleeping better already!

mad4photos said...

I know this is a completely delayed response... but I just found out about this website at the conference in Denver.

We also had a difficult time deciding if a port was right for our son. (took us about 2 years to finally say yes) He's a VERY difficult stick, and what pushed us over the fence was the doctor telling us... what if he were in an accident... instead of having to poke him multiple times and probably causing more harm than good, the EMT's can just access his port and get the treatment in immediately.

We currently are "on demand" treaters, and the majority of our port accesses are monthly flushes. However, I feel such a sense of relief that we can do the treatments ourselves, and don't have to rely on hospital personnel to find a vein... which in our case, caused a great deal of delay in treatment in the past.