Wednesday, June 12, 2013

House Institute

Today we had our first visit with Dr. Luxford at the House Institute.  I was really pleased with the outcome, and I'll try to summarize as best I can.  Sometimes I feel like I should bring a tape recorder to these big appointments so I can remember everything!

We went to House because they came highly recommended, and when we made the appointment we asked for the doctor with the most experience with children.  They recommended Dr. Luxford, and so far he seems great.  Today was just the initial consultation in their Orange County clinic.  Everything else will have to be done up at their main office in LA.  They have a children's center up there, and our next appointment will be there.  In the meantime, all of Ryan's testing up until this point will be sent to him there for review.

Here's what I gathered from our meeting.  They highly recommend trying out hearing aids first to see if they help at all.  Once you do a cochlear implant, there's no going back.  Any chance of hearing will be destroyed by the surgery, and there's always the chance that the ABR that showed him to be profoundly deaf could've had a false read.  With older patients, they'll do behavioral tests to see if they respond to any sound at all, but at Ryan's age, he wouldn't be able to do them.  So, from what I understand, we'll likely get him fitted for some hearing aids to use on a trial basis and see if they make any difference.  If they don't work, then we will move on to cochlear implants.  We will start with one ear, and monitor for up to a year to see if it's helping.  He was one of the doctors who likes to give you the worst possible outcome and then if something better happens, we can celebrate instead of giving us hope and then having to disappoint us if it doesn't work out.  I'm used to that from the NICU days, so I'm still very hopeful that the implants will help, but I understand why he doesn't want to get our hope up yet.  We will just have to wait and see and continue to pray our hearts out that Ryan can have some hearing.

Dr. Luxford asked us a lot of questions about Ryan's history, and was very good about acknowledging the need to hold off and make sure his overall health is stable enough before such a long surgery.  He would need to be sedated for over 2 hours, so he would want to make sure everything was cleared by cardiology and pulmonary.  I will definitely ask about it next week when we have our Pulmonary Hypertension Clinic appointment.  He made it sound like as long as everything checked out, we could be looking at possible surgery within the next 6 months, so we'll see.

I know this shouldn't be the most exciting part...but, it sort of is pretty darn exciting.  We were under the impression that since anything related to hearing was part of an exclusion on our insurance, we would have to pay for everything out of pocket.  This was pretty crazy considering a cochlear implant can cost upwards of $30K from my understanding.  Well, we found out today that insurance typically DOES cover CI surgery!!  I was very clear in questioning that because I really thought it was excluded because it's related to hearing, and he said, "No, because it's a surgical procedure, it should be covered.  And if they denied you for some reason, it would be a very easy appeal.  The only thing they don't cover typically is hearing aids."  So, the hearing aids will be loaned to us (I think) on a trial basis so we can see if they even work before we invest in those.  What an amazing blessing and stress-reliever it was to hear that news!  Of course, part of me is still worried that the bill will just show up in the mail because we've dealt with our share of insurance snafus, but he was pretty convincing that it should be covered!

Thank you all for the kind words, happy thoughts, and prayers you sent Ryan today.  We will continue to update as we learn more about all of this.  In the meantime, we have his 15 month well visit tomorrow, and we're hoping he has gained some weight so we can cut back a bit on the formula.  Prayers in that direction would be greatly appreciated!

post signature

No comments: