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Monday, February 9, 2009

I need opinions :-) please

So I am suppose to call and get Kadyn evaluated for Port surgery. Of course I am going to call and see what surgeons think. If I should go ahead and let my son go through this surgery or not. I am worried. 

I decided to make a pros and cons list. So far I am still inconclusive as to what is best for Kadyn

Pros: No more poking
          Can stop his seizures faster
          Easier to draw blood for testing
          No more hour long seizures

Cons: Anesthetics  
           Surgical risks

4 to 4? Can anyone help me here, give me reasons as to why and why not, and you opinions.

I am kinda going for because it means no more pokes, no more hour long seizures, I just don't want to put him through another surgery. They told me that because he is such a bad poke that it would be better for him to get this port. They can hook iv to it and put in medications and even draw blood from it.  I just was wondering if anyone had any experience with these or people who have had them.  Thanks.

On too funny things


I look over at his bed and see something moving up and down and of course with Kadyn track record i think OH NO he is seizing. Thank goodness I was wrong. So i grab my camera and record him. YOu can hear his "evil voice" dada one time I got him to say it but he was too busy playing really fast peek-a-boo! The quality of the video is bad because the lighting is bad in our room. OH well he still looks cute as ever!!! He also has pedisure all over his face. I washed it after the video. What baby doesn't look cute with dirt on his face hehe.

He is having fun because he is still doing it. HE also sounds congested. He has been congested for 2 weeks now. They think it's because he is teething really bad. They tested him for RSV and everything and everything came back negative. I am currently coloring dinosaur pictures to hang in Kadyn's room. We are trying to get his room together. Not that I mind him being in here, but I think he would sleep better in his own room. He always did. Plus he likes the music on all night and well, I don't lol. I've tried turning it off when he falls a sleep but it always seems about 10 minutes later he wakes up. It's crazy! He has been doing really good since he has been home though. I need to go get us a scale for his new diet and call the dietitian to find out when she wants the blood work done because I don't think they did the blood work for the testing they need to do for the new diet. So, there is one definite admission in his future, maybe two if he gets this surgery. Well, I am hoping things go the way they are suppose to. I am just tired of the seizures and the pokes. NO matter what.  I am always on time with Kadyns medication. 9am and 9pm. Not a minute late or early. I start his medication at 8:50. Getting it together, crushing 10 pills putting strawberry pedisure mixed in and putting that in syringe, Keppra 2.5 mls, Dilantit .5 ml and tryliptal 1 ml. It seems like Kadyn lives on medication. I don't like that. I am hoping this diet gets him off the medication. The only option left would be brain surgery, but you bet I'll get a second opinion before we even attempt that. Maybe 3 opinions. I don't care, I will do everything in my power to avoid that. I mean Kadyns brain hasn't even grown back all the way. I am too scared for Kadyn. I mean these seizures aren't making Kadyn forget how to do anything, they are slowing him down physically a bit but mentally they aren't. I guess I think removing a piece of his brain is a little to much for me to handle. I don't know. ugh! OK well I think I am going to finish coloring Kadyns pictures. 

(oh and i suggest Boogie wipes for stuffy noses in babies and kids They can be found in stores too. I use the on Kadyn and his nose never turns red or gets raw. I love them!)


Cheryl said...

A port for SURE!! It is wonderful to draw blood and give IV fluids/meds. I can't remember if it was done outpatient or not. My daughters' has been replaced once in 8 yrs, for an infection. It does have to be flushed with normal saline and locked with Heparin every 30 days (if it hasn't been accessed for another reason). That should be able to be done in the Dr.'s office with one poke. Praying things go well for Kadyn.

Amy said...

Well I don't have any experience with ports but from a mommy's point of view if it keeps your son from having pokes and especially the hour long seisures I would do it. That is to say that if it were my daughter I would think that the benifits outweigh the risks. I know it's something small but I would really like to send Kadyn those dog trading cards. Even if you just want to give me a po box number or a friends address...


Carla said...

Hi, I just saw a program on the TNT network about Dr. Ben Carson, he's a pedi-neurosurgeon who has done the operation of removing half a child's brain for epilepsy! The child's name is Jesse & she has a website- I can't remember where it is though, I'll keep looking for you.
As for the port, I would do it if I were in your situation, but there is another mom in the blog world whose daughter has something similar- I think she called it a central line. Her blog is Caliegh's Corner. There is a link to it from my blog if you want to check her out. Her mom has done a TON of research on different therapies. Sorry this got so long- Just wanted to pass on some info to help in your desicion. Kadyn is one of the cutest boys I know!

Carla said...

ok, found it!

Kristen said...

I'll have to check out those Boogie wipes. Cayman is really congested too. She has 3 teeth trying to work their way in.

I am not familiar with those ports so I can not give an accurate opinion one way or another.

I pray for the right decision to come to you.

Brendolyn said...

I would definitely have the port put in. It's a fairly simply procedure where the benefits absolutely are worth it. Yes, you will have to flush it but that's nothing compared to what you're already dealing with. Not having to see your son be poked all the time will be so much easier on you and will definitely be easier on little Kadyn. My daughter had one when she was in renal failure and it really wasn't a big deal. I hope this helps in your decision. Best wishes to you and that adorable little man of yours.

karen1985 said...

I just wanted to say you are my new idol. I can't imagine going thru what you go thru everyday. You are an amazing person and your son is beautiful. No matter what you decide to do will be what is best for your child. Keep up the fight!!!