Emily’s port is no longer functioning
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April 5, 2011 at 10:13 pm
Emily had a treatment today & when the nurse accessed her port she could not push any saline through. We have officially declared the port as done.
We will be going to the surgeon on Friday for the pre-surgical consult. I’m assuming we will also get our surgery date then.
Emily had to get an IV today & she did really well. The nurse poked her & had hooked up the IVIG line & Emily said “Did you do it yet?”. Thank goodness for Emla. Next time we are going to try some numbing spray.
Just thought I’d update you all.
Kelly -
April 5, 2011 at 10:57 pm
Sorry to hear that Kelly. What a pain in the behind. Emily is a real trooper though.
Laurel -
April 6, 2011 at 7:01 pm
Laurel –
Thanks for the kind words. Emily seems to have accepted having the port removed, it was hard at first…it’s been in for 5 1/2 years now.
Kelly
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April 6, 2011 at 8:10 pm
Sorry Emily has to have her port replaced.
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April 6, 2011 at 11:38 pm
Limekat – Emily’s port isn’t being replaced. She’s going without one & will be getting IV’s. The surgeon is reluctant to put another one in because she only has 1 vein left, on the side of her neck, to use. He would like her to go without one for awhile & once she’s full grown (or at least hit puberty & is bigger) and if she still gets IVIG then he will put another one. His thinking is with only 1 vein left he doesn’t want to have her go in for surgery & him not be able to use that vein (if something goes wrong with it). When she’s bigger if that happens he will be able to use a vein in her arm.
It’s a very complex situation. There are other reasons but that is one of the main ones.
I’m excited that my child will get to spend some of her childhood without the worry of her port. She doesn’t remember life before CIDP & she just knows to worry about keeping the port safe during play. I think it will be nice for her to not have to think about it for awhile.
It’s good to hear from you..it’s been awhile. I hope you are well.
Kelly
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April 7, 2011 at 7:20 pm
Kelly and Emily, I will always have you both in my thoughts and prayers. Emily
has such a wonderful spirit, my grand-daughter is 12 and an ice skater. I tried to
roller skate once with her but I looked like a giraffe with 8 legs!! Take care, both
of you.Ms. Judy
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April 7, 2011 at 8:45 pm
Hi Ms Judy – I have tried a few times to skate with Emily. It is NOT like riding a bike, LOL. I feel very wobbly & I’m afraid to fall. I imagine falling hurts MUCH worse now that I’m older.
I cannot even begin to tell you all how proud I am of Emily. She is taking this all really well. She tells me she just finished 35 sit ups…which she says she needs to do every day in order to be a skater. I wish I had her energy.
The pre-surgical appointment is tomorrow. I will post back when the surgery date is.
Kelly
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April 8, 2011 at 3:19 pm
We were referred to a pediatric surgeon at Children’s Hospital. Our surgeon is concerned about the length of time the port has been in – he’s worried it might be stuck. If that is the case a cardiovascular surgeon would have to be called in & heart bypass surgery will have to be performed.
I am waiting for the new surgeon’s office to call back with a date. I will keep you all informed.
Kelly
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April 8, 2011 at 4:40 pm
Good grief Kelly! Can you describe the path of a port so I can visualize what has happened? I get the fact that having been in so long the tissues can grow around it, but I didn’t know it was so close to the heart! Praying that it is much simpler than it sounds.
Laurel -
April 8, 2011 at 5:27 pm
Laurel – The actual port is located in the chest area but the catheter is tunnelled up through the neck & then down towards the chest. It is connected into the main artery that leads to the heart. Thus the need for the heart surgeon to be available should things not go smoothly.
I was trying to Google a good link for you to see placement but couldn’t find anything quickly. I did find some YouTube videos that show placement & removal of a port.
Kelly
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April 8, 2011 at 9:30 pm
Oh my goodness, Kelly. I didn’t know about this. Do post the Google site for me to view. Emailed you back last night but know this new situation has taken priority.
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April 8, 2011 at 10:07 pm
Kelly,
I am so sorry that Emily is having problems with the port. She will be in my prayers that all goes well.
Emily is a very special person to us on the forums.
Shirley -
April 8, 2011 at 11:35 pm
LimeKat – I replied to your email a few minutes ago. I had to keep it short though. I’m exhausted.
Mattyrae – Thank you for your prayers. They are surely needed & much appreciated.
Kelly
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April 9, 2011 at 9:21 am
Woman,
Don’t forget about that statistical law of averages we spoke about!!! -
April 9, 2011 at 1:37 pm
Yeah Dawn…not forgetting. I’m sure if I do, you will remind me 😉
Kelly
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April 9, 2011 at 4:36 pm
Hello Kelly,
Because I use plasma exchange as my main therapy and because I have nearly inaccessible veins, I have a dual lumen central line. It has clotted a few times, but the clot was always removed with a quick treatment of Cathflo (a low dose tPA).
I assume that the doctors have treated Emily’s port with it. If not, it is certainly worth the half-day or so it might take to try. The reason I mention it is that one person I know could not talk her doctors into trying it because “it is only for strokes or heart attacks”. Apparently they were unfamiliar with Cathflo.
~MarkEns
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April 9, 2011 at 7:27 pm
MarkEns – Emily’s port was treated twice with Cathflo about 18 months ago. It was successful the first time, we got both a blood return & were able to flush it. At her next treatment the nurse was not able to flush after access. So we tried the Cathflo again. This time she was only able to infuse & to not get a blood return.
We went to the surgeon & he said it was probably because Emily had grown significantly since the port was placed & it was probably due to catheter placement – meaning it had moved due to her growth. We all decided collectively that the next time the port was not able to be infused it would have to be removed.
At this point, knowing the risks of keeping it in any longer, I just want it out.
A few years ago, if this was happening, we would try anything & everything to save it.
Kelly
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April 11, 2011 at 5:25 pm
Emily’s surgery is scheduled for April 29th. I will know the time the day before.
Just thought I would update.
Kelly -
April 11, 2011 at 5:36 pm
Thanks for letting us know Kelly. I’ll certainly be saying a prayer for her that day.
Laurel -
April 11, 2011 at 5:39 pm
Thanks Laurel – The prayers are VERY much appreciated. We could use all we can get.
I’m trying to remember that I cannot control everything & that I need to not worry about what I can’t control. And I’m trying to up my good Karma, LOL.
Emily is going to the dentist tomorrow to get 2 fillings & to see the orthodontist. At least she gets to still be a normal kid.
Kelly
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April 11, 2011 at 7:19 pm
Hi Kelly,
I know you must be exhausted sweetie, not enough credit is given to our caretakers, g.. luv em.. just wanted to be nosey, you mentioned Emily will be
at Childrens Hospital, now I know there must be more than one but if you are
talking about the one in St. Louis, it is excellent, she will be taken care of there as if she were a princess!! (and she IS a princess) Let me know if it is and I’ll
be there to support you Kelly. You can e-mail me if you want.Love and prayers,
Ms. Judy -
July 19, 2011 at 2:34 pm
Sorry I am new here but ugh my almost 4yr old daughter has cidp and a port and I am so scared of this happening to her:( So sorry your daughter is going through that:( I havent had time to read many others post yet but Emily’s mother I thought I read your daughter was 4 when dx and now is 9? How is she doing? and you can just point me to a post that has your story if its easier if you dont mind me asking:) my daughter was dx with gbs oct 2010 and then dx with cidp dec 2010:(
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July 19, 2011 at 9:04 pm
R&R Mama – I sent a private message to you.
Kelly
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