Friday they will put the port in

Hey Dawn

Kevie’s getting an actual port…bravo. Mine is under my right collarbone.
I had one done about the year of 2000…it was a Deltonic. It worked for
five years and then fell apart. I have a new one…don’t know who makes it,
but I call it the sputnic…it’s round, small.

If you go into CIDP forum, someone has a thread on Ports…Lisa, I think…
some have explained their ports already…me, as well. Take a look…

Good Luck to you and Kevie…he will be so much better off with a port.

Miami Girl

Hello, I am glad to hear that Kevie is getting a port. It really is a blessing for children to not have to be stuck a lot and to have to have people search for veins if they are hard to find. Ports are also safer from infection and more compatible with “real life” than a broviac or a PICC line are anyway. I work at a Children’s hospital with lots of kids with ports or lines for treatments including IV IgG. It is a blessing really. At our hospital, the ports are always placed with the child asleep with anesthesia so there is less stress. We have a manikin “Chester Chest” to show kids what the port looks like–it is like a 1 to 1 1/2 inch button under the skin of the upper chest. We use LMX4 numbing cream (with lidocaine) to put over the port before accessing it with a special needle so that it does not hurt the kids. Some kids use ice or “freezy spray” instead, but most families put the cream on before leaving home and the skin is numb by the time they reach clinic. Women often have the port placed higher up near the collarbone as Miami Girl had, but most children have it put lower so that it is hidden with clothes and less likely to get bumped. Kevie should know that the port is usually sore like a bruise for about 3-4 days after it is placed because the port is slid under the skin and after that most kids can forget about it most of the time. The really nice thing about ports is that you can still swim and bath/shower with it in because it is under the skin whereas with a broviac or PICC line, you have to be really careful because the tubes come out of the body. Some kids getting multiple days of treatment leave the port needle in until it is done, but others get “reaccessed” each day so that they can be normal (and sleep on their stomachs if wanted!). The three biggest things to know about a port are also 1. often there is swelling and tenderness right after the surgery so that it is better to have it accessed in the OR and kept accessed the first time until the treatment is over. The discomfort is much less if it is accessed in clinic for the first time several days after the placement. 2. It is a foreign object in a person’s body and there is a risk of infection. Each hospital has their own rules about ports, but most say that any child with fever and a port/line needs to be evaluated (seen by a doctor and have a blood culture done) to make sure there is not an infection in the blood stream especially if the port was recently accessed (so that there is a possibility that an infection might have gotten straight into the bloodstream). This is not likely, but we tell everyone that children are precious and it is better to be safe because children can get sick really fast. Infection in the bloodstream is especially important to be careful about if there are chills with the fever or dizziness. I do not mean to scare you, but it better to know this and stay safe. 3. We have lots of kids that are so thankful after the port is placed because it is really easier on them. I am sure Kevie tries to be brave, but it is hard to deal with illness, differences from your friends, and pain from someone searching for a vein to start an IV. The port is easily felt through the skin and the needle goes right into the right place. A port can stay in place for years as long as it does not get an infection or a clot or have trouble to work. At every hospital I have worked, the rules are that the port has to be “flushed” with heparin at least once a month, although occasionally places space this to as long as 6 weeks (again, in my opinion, it is better to flush it monthly and be less likely to get a blood clot in it so that it keeps working well than to take chances).

As far as brands, there are many good ones and there are ports made for children that are smaller and thinner due to the thinner skin layers in children. I would suggest this if possible and a single lumen port. The port needles used for children are also shorter than adults so that it sticks out less and is more comfortable. Often we have families keep a (sterile) needle of the right size at home to have available to use if needed since many “adult” hospitals and home care agencies mainly stock just the adult sizes.

One another thread you mentioned the stress that you all are feeling. There may also be a social worker associated with the clinic that could help sort through the best way to approach this. One thing that we try hard to do at the hospital where I work is to try to let kids be as normal as possible and to also try as much as possible to help make their paths a little gentler as they go through illness, by minimizing pain and scaredness. Children are not little adults and there are a lot of simple ways that help them get through illness. A port-a-cath will really help as will using the LMX4 or EMLA numbing cream and making sure the first access if not done when the area is swollen and tender just after placement.

I hope all this helps Kevie and you.
With hope for cure of these diseases (and childhood cancer!)

Dawn,

I read your posts from yesterday and tears just streamed down my face. I am so sorry you and your little guy are going thru all of this. It so isnt fair to us as adults but I feel it’s even more unfair to the children.

We trick or treated yesterday at the nursing home my mom is at (but coming home from) and at the home they have a pediatric floor for kids on vents.
It’s the saddest thing to see…from babies to teens…you just ask yourself, why.

We’ll never know WHY and everyone tells me that God doesnt give us more than we can handle …I often question that.

I’m glad Kevie is getting a port. My mom has had one since July 06 and has had no probs at all…it makes everything seem so easy…no pokes and iv meds go right into that.

I wish there were words I could say or something I could do to make this better…just be strong for that boy…he needs his mommy more than you know.

Best wishes Dawn and good luck…hugs to you both.

Stacey

Dawn, I’m thinking of you and Kevie and your whole family. Hang in there. Right now a lot of things are happening at once, and you don’t have a lot of control–very scary. That must be hard for Kevie, and everyone in the family. Deep breaths, one hour at a time if one day at a time is too much.

I think going every 4 weeks is a good idea to begin with. It’s a good baseline & since the port will have to be accessed anyways…it makes sense. Kevin is getting just 1 IVIG treatment every 4 weeks, right? It will probably be easier on him too instead of going multiple days in a row.

The surgery should only take about an hour or so. Don’t hold me to that. Sometimes it takes longer if the dr is having trouble getting it in the right place. Emily’s surgery took like 2 1/2 hours, I think. All I know is that I was a wreck waiting for the dr to come out. Make sure you tell the surgeon where you want the port to be placed. Remember though that the port is usually good for about 3 years & Kevin is an older kid who probably has to carry a backpack (Emily has a rolling backpack to avoid putting pressure on the port).

Have the surgeon leave the port accessed after surgery. Then you can either get the IVIG in the hospital or at home & Kevin won’t have to be accessed again to have it done. The area will be tender for at least a few days.

He’ll have an incision in his neck (near where the neck meets the shoulder – kinda) and another incision above where the port is. I think Emily had about 4 stitches in each area (just to give you a size of the incision).

While he is accessed he isn’t technically supposed to take showers or baths. Make sure he gets a really good shower Thursday night. Call me for the details on how I bathe Emily with the port if you want to.

If the port is accessed you might have to flush it yourself, if the nurse isn’t coming that day. It is NOT that big of a deal. Just remember that alcohol wipes are your friend and use them liberally on the end of the tubing. I’m sure we’ll talk more about that & I can give you some pointers.

I’ll try to find a pic of Emi’s port right after surgery to email to you so you know what it’ll look like. If you have any questions you know you can call. Tell Kevin to have a good time Trick or Treating tonight.

Kelly

Dawn,
I haven’t been on the boards for a while, and I’m so so sorry to hear about Kevie. I have no real advice, but it sounds like you’re on the right path. I think we all go through the “why me” stuff, but it does get better. Also, getting the symptoms under control through regular treatment may help.

My thoughts are with you both,
Caryn

I really am glad to know that he is getting the port and yes flushing it once amonth is the perfect amount of time. My son’s port they tried to wait 6 weeks and had a very hard time flushing it so we always flushed every 4. After the first couple of times I did it at home myself if he wasn’t in hospital at the time. He had it for a little over 6 years and never had an infection from it. His was a small buton type that you didn’t see with clothes on. He now without it has a very small scar but he has some larger ones from surgery. He had one from chest to belly button that they opened about 7 times that he started calling it his zipper and the port he called his button. He used to tell people that he was just like the shirts in his closet and they must use a sewing machine in that OR. Then he would laugh at peoples expressions and tell them he was joking. He had days that were very hard on him but eventually he got through and dealt well. I hope your son does very well and that after the port placement he will feel alot better about getting his treatments since the small needle they place they barely notice. My son got the cream placed on the area the first year or so but then he didn’t think it worked for him so he didn’t bother with anything but he does have a high tolerance for pain from all the surgeries he had been through already at that point. Things will get alot better stress wise or treatments now. Hope your son has a great Halloween. Take caremy prayers and thoughts are with you both.
Sincerely
Jody

Hey Dawn,

Good luck on Friday! Ben had a port put in for morphine in ’03 and is finally having it removed, probably in December. His was for back issues, and the morphine was completely shut off last month. Ben’s port is in his left abdomen. It’s big and ugly, but his doctor says they make ’em pretty small now.

I’ll be thinking of you guys!

Happy Halloween!

Love,

Shannon

Dawn,

I was reading your posts from yesterday and while I know Kevin is going to get a port now, I just thought I’d pass on a little advice that has help my infusions go a lot smoother.

I am the hardest stick my infusion company has to deal with. Though I’m 21, I have to have a peds nurse because my veins are not like a normal adults. My current nurse (and I’ve recycled quite a few) has been able to get me down from 6 -7 sticks per infusion to one or two by strict changes to my diet (as well as using a topical lidocane on the spots she sticks me with, but that’s not as relevant).
She requires that I have high amounts of protien at each meal (a challenge, as I’m a vegetarian) and do my best to eat iron rich foods. The 24 hours preceding my infusion, I have to kick my protien consumption into high gear, drink 60 oz of water, have zero caffine, eat six times a day (3 meals, 3 snacks) and, get this, drink a milkshake. Apparently, sugar and the protien opens up the veins. I was hesitant at first, but her rules worked!

While with a port, Kevin won’t have these vein problems, but I can say that this change in diet has helped me tolerate the IVIG a lot better, too. I feel stronger on the day leading up to the infusion than I normally would have, I’m not forced from sheer exhaustion to sleep through the infusion, and I generally feel better when its done. I’m able to get up and walk around rather than laying in bed.

I’m not saying that you have to follow the super stringent food-as-medication rules, but a medically nessicary milkshake might be something nice for your son as well as very helpful for tolerating the infusion!

[B][COLOR=blue]Sorry Kevie has to go through that, I remember very well in the case of my wife. She had some kind of problem with her blood veins, I saw one person after another try & find her blood veins. So they wound up more times than I want to remember, cutting a hole in her neck & putting it in her neck. She also had several cases of having a PIC line put in, I made the mistake once of watching the nurse remove one of the pic lines. [/COLOR][/B]
[B][COLOR=blue][/COLOR][/B]
[B][COLOR=blue]Well I have low blood to start with & it almost made me sick seeing it removed. I also went to one of her plasma pherisis treatments, & that one did make me sick . Watching the blood going through those lines attached to the machine. 😮 [/COLOR][/B]

I fought getting a chest port for over 15 months. I finally ran out of hand veins after blowing so many IV’s so many in one day. When the only option was to use the veins on the painful inner side of my wrist I knew I had to do something.
One day last summer 2006 I made the decision to get the BARD port and after the surgery went out for dinner.The port did hurt-it WAS surgery. Described by another IVIG lady-“It felt like a mule kicked her in the chest”.
I can’t say enough has much easier getting the IV in is and no more problems with attempts finding a good vein in my arm. Just a tiny needle-one pinprick. Sometimes the clear plastic patch covering is pulled too tightly across the needle and must be eased up to feel better.Ask for the smallest needles possible.
My cat always seems to find the exact place on my chest where the port is and I must tell him to move himself a little.
Good Luck and fast healing or you little boy””