had our first scare

Comment

Comment by Colton on February 4, 2010 at 1:06pm

Hey Brandon i hope you guys have everything under control. Also in addition to what Armando and Carri said, mouth bleeds will tend to bleed more especially at night because saliva breaks down clots in the mouth. You might talk to your doctor about Amicar if he hasn't mentioned it to you yet. Amicar breaks down the saliva to help keeps clots it is also sometimes used for nose bleeds. As for your port questions, i too have a port and the port is under the skin and basically after infusing put a bandaid on it and it doesn't have to be on for very long. Just long enough for it to stop bleeding and other then that your fine. It doesn't have to be cleaned except before infusion, and your doctor and the nurses will explain all of that to you when he gets it. If you have any other questions just let me know!

Comment by Carri Nease on January 31, 2010 at 6:46pm

Hi Brandon- we use a standard spot bandaid to cover the pin hole but take it off by bedtime since the skin tends to be very sensitive on little folk.
We don't keep the boys accessed unless there is a bleed & we need to dose several hours a day- very rare thankfully! It's too dangerous to keep a needle in an active kiddo- let alone two!
I'd love to chat via the phone if you want-- I have verizon and can call you so you don't have to pay long distance, drop me a note if you or your wife can talk.
I can answer more port questions better in person than here :0)

Comment by Brandon Freund on January 31, 2010 at 5:19pm

Thanks for the tips you guys, much appreciated. Even though this was a minor bleed is still scared us a lot. We've been lucky so far, no joint or muscle bleeds yet "knock on wood". Im surprised he hasnt had a bleed yet, especially with him being such an active kid. He was walking before he was 10 months old. The doctors at the HTC told us most kids experience their first joint bleed once they become mobile.
I was wondering about the port. Hayze is getting his soon and they are going to teach us how to infuse him at home. What do you do to keep it clean during the day? do you need some sort of protector over it? Is the entire port under the skin or is there some exposure? thanks again!

Comment by Carri Nease on January 30, 2010 at 7:53am

I forgot to mention, Tyin gets prophy to keep his inhibitor at bay- he is dosed every other day. Connor is being treated for his inhibitor and is getting dosed every day. Tyin is on Advate and Connor is on Alphanate (plasma derived Von Willebrands factor with factor 8 in it).

Comment by Carri Nease on January 30, 2010 at 7:48am

Hi Brandon- each person bleeds differently with hemophilia. I have 4 year old twins with severe hemophilia A and inhibitors in various stages of repair. My boys bleed differently from each other- even being twins and inhibitors! Connor (active inhibitor- resistance to factor) has few bleeds- mostly soft tissue stuff that we help prevent with bruz wear pants. Connor has had 2 ankle bleeds- one was pretty bad.
Tyin on the other hand has had 2 confirmed joint bleeds- one ankle, one knee- and a couple suspected and treated at home... this is my child who is currently in remission from his inhibitor and has 3% factor in his system at the 72 hour mark. He has more problems with his joints than his brother does.
Both boys have thankfully been able to treat their mouth bleeds (one really deep tongue bite on Connor had the local HTC making bets when we would call to be admitted over a weekend for treatment!) with popcicles and factor! Our insurance would not cover the 300$ amicar prescription (medicine to stabilize a clot in the mouth since saliva breaks them down) but would cover the 3000$ plus dose of factor several times a day-- we thought we'd be getting admitted but never had the problem. Dosed factor at home (both have had ports since 11 months due to the inhibitors) and gave popcicles and all was well.
Good luck-- ports make things easier and harder at the same time... for every fever you have to go to the HTC for port cultures-- our HTC has let us get to 102 degrees before requiring us to come in now but it started at 100.5 degrees for labs. The fever check is even if you know they have a cold or some such-- since line infections are fast and deadly, you have to have it checked. Some HTC's require admission to the hospital for 72 hours for IV antibiotics while you wait for results. Some give you a big dose of antibiotics in the ER and let you go home with the understanding that if anything shows up, you will be back immediately for more antibiotics and probably admission.
Prophy is wonderful- ports are a godsend in some cases, maybe in your case it will be since you are not near a big hospital that treats.
Feel free to ask questions and chat-- welcome to the community!
Congrats for making it to this age before you had something really big!

Comment by Armando Serrano on January 29, 2010 at 4:11pm

Hello Brandon:

Everyone that has hemophilia knows very well that for some weird reason we tend to bleed at night. It is very common. Due to the fact that he is a baby (and even an adult can experience this) he is going to move alot in his sleep and move his tongue around. That was what broke what ever clot he had. Monitor his bleeding after he gets more factor----if indeed he bleeds. Also, check the units he receieved and the product given to Hayze. Start up a log sheet because we tend to get alot of recalls of factor products and supplies. The main reason for this is also to monitor his bleeds overall. Keep up the good work Brandon!