A couple updates

[Melissa Hearn]

Hey all,
Sorry I've been absent for a while. Getting too caught up in life I guess. . .

Anyways, there's been some good news for us - Bryan's Soliris has been covered by the new insurance company trough April 19th. At that point, we will need to submit more paperwork showing that the drug is still working, but I suspect that that is just a formality and things will continue without a hitch.

The less exciting news is that his Soliris infusion didn't go very well last Tuesday. It took 3 hours worth of trying and 10 needle sticks to get Bryan's IV in. All this to say he will be getting a port put in next Thursday. I've heard everyone say how much easier it makes life once the port is in, and know in my head that it will make his infusions much less traumatic. However, the idea of going in for surgery never makes me feel too good.

Also, his creatonine to protein ratio was high. We did a repeat urine test on Tuesday, and are hoping it was just a lab error. Still waiting on the results for that. It could mean we'll need to increase his Soliris frequency or decrease the amount of time over which the drug is given. We should know soon.

Hope everyone else is doing great!

Melissa
(aka Bryan's mom:)

[Cheryl Biermann]

I hope everything gets back to normal soon, and he will do better with the surgery that mom and dad!  At least he's too yougn to worry before hand and once it heals, he won't remember.  God bless you all.

[Melissa Hearn]

Thanks for your kind words everyone!

Phyllis - I'll definitely be there. Not sure about the kiddos yet, I want to make sure we're 100% clear of runny noses before bringing them over to play with Hyde.

[Cheryl Biermann]

Yep, I have to agree, a permanent, under the skin port, awsome, they even let you use numbing cream. It's not like numbing cream on a vein that causes the vein to disappear so they don't use it. Good luck. Let us know when so we can pray up a storm.

[Svetlana Finley]

Poor baby got a LOT needle sticks. We will be praying for surgery go with out problems. His infusions will be a lot better after.

[Amy Swarbrick]

Oh man, poor little guy....that's a lot of needle sticks. It brought back bad memories for me of when Brody was in the hospital (before his central line) and they were having such a hard time getting blood that they started sticking him in the head! So as much as surgery is a bummer, it sounds like it will spare him the pain. We mamas now the less pain and tears the better:)

[Phyllis Ann Talbot]

Melissa - I'm right there with you on the whole thought of going in for surgery - but I do have to say the portacath Hyde has has been great - REALLY makes clinics and everything else that much easier.....by the way - looking forward to seeing you guys on Sat?

[Linda Burke]

Thanks for the update, Melissa....Skyler's portacath has been in use since right after his initial Soliris infusion - I don't think either of us could have stood using a regular IV all this time. Keeping fingers crossed that your journey will become smoother for you all soon!