Sunday, September 29, 2013

Well that was fun!

This was my first experience with a child having major surgery.  We arrived at the hospital at our scheduled time of 8:45 AM on Friday morning.  All the other times we've been in Same Day surgery we waited around for a quite awhile, but this time moved really quickly.  They came for us about 10:00, and by 10:10 I was in the waiting room.  Just after 2:00 the audiologist came in and told us that the implant passed all the tests with flying colors - all of the electrodes worked and his auditory nerve responded to the stimulation beautifully.  All excellent news.  A few minutes later Dr. Chi (ENT doc) came in to update us on the surgery part.  He told us that the surgery had gone well, and the implant was in nicely and James was doing well.  THEN he told us that sometime during the surgery, James's heart monitors showed a short "pause" in his heartbeat.  A 44 second pause, to be exact. (Although we wouldn't get that specific info until much later.)  It restarted all on its own, and stayed beating properly for the rest of the surgery.  We were told cardiology had been called and they would be down to see him.  Dr. Chi had no explanation for what had happened.  He said there is an extremely rare syndrome that links hearing loss to heartbeat, but it's so rare that hardly anyone knows about it.  That was about all he could say on the matter, and we just had to wait for cardiology.  Hello freak out.  It was probably close to 3:00 by the time they took us to him in recovery, and he was still pretty out of it.  The anesthesiologist came and re-explained what had happened, but he didn't seem overly concerned.  Still freaking out.  A nurse came and did an EKG, and one of the cardiology residents came and talked to us too.  She asked us a bunch of questions and said they would also do an ECG (like an ultrasound of the heart to make sure everything was structurally intact) and monitor him overnight.  Long story short on all this - everything came back clear, no other "pauses" happened, or anything else even questionable.  They do want us to follow up in a few weeks just to be safe, but basically they are chalking it up to just one of those things that we'll never be able to explain.  They said he's fine to have his dental work on Wednesday, although I'm sure I will be trying hard not to freak out over it!
Once he was ready to leave recovery they took us to the x-ray place to get x-rays of the implant.  Later on Dr. Chi came and showed us the pictures.  It's so wild to see a device implanted in your child's head,     completely mind blowing that it's even possible.  I don't remember at what time we got to our room, but poor James had a rough time of it the rest of the night.  When he was awake, he was nauseated and vomiting anything I gave him to drink.  This continued through the night.  They gave him iv fluids so he wouldn't dehydrate.  He absolutely hated the iv, and any time he got medication he would cry and fight the nurse.  (We had incredible nurses, by the way!!)  The morning brought no improvement.  I had fully expected at the beginning that we would be able to go home in the morning.  But with him still puking and refusing to drink, I was afraid we would be stuck there another night!  He was completely lethargic all morning, and I know so many people were praying for him.  Since he was still feeling sick, the nurse got the doctor to order an different kind of nausea medicine.  I forget the name of it, but it did the trick!  Around noon the nurse asked if maybe he would take a popsicle, since he wasn't interested in drinking.  We gave it a try, and lo and behold, it worked!  He ate it, then asked for more food.  So she brought him a second one and he scarfed it up too.  Then he was cleared to try food, so I ordered him some soup, fruit, and crackers.  He ate all that too, even wanted to feed himself.  He was also making his little noises again and acting more like himself.  We were discharged around 6:00 and gladly headed home!
It's so wonderful to be home.  Being in the hospital with him always reminds me to be so thankful for my healthy children.  Even when he was so sick, I knew he would get better soon and we would go home.  If not yesterday, then today at the latest.  But so many parents there don't have that confidence.  Sitting in the waiting room and listening to conversations was so heartbreaking.  I mean, here I was, excited for surgery, while some of these other parents had kids who were seriously hurt or ill, facing an uncertain future.  I am so grateful that James came through surgery just fine, even with the heartbeat incident.  I know I will never treat anesthesia casually again, nor will I take my children's health for granted.  I know of so many medically fragile children right now, and I pray for them regularly.  When you think of James, please take a minute to pray for kids who need a healing touch from the Lord.  If you don't know of any personally, you can pray for Selah, Ethan, Judah and Misha.

Friday, September 27, 2013

CI Number 1!

Well folks, the long awaited day (for Jason and I, at least) is finally here.  As I type James is in the OR receiving his first cochlear implant!!  It feels like it's taken forever to get here!  We've been talking to him about this surgery for a few weeks now, about going to the hospital and seeing the doctor.  I'm not sure how much he understands, but I think enough to know that surgery isn't something people usually enjoy!  When we got here he was fine, except for being angry that I wouldn't give him anything to eat.  When you check in they give the child a map of everything that happens from check-in to discharge.  He was looking at all the pictures, and when he saw the one of the OR he told he didn't like it, didn't like the gas mask.  So say what they will, he remembers what happens in there!  (One of the anesthesiologists told me that with the happy juice they gave him, he probably wouldn't remember anything.  Yeah, right.)  Anyway, we hung out for a little while, not as long as other times, and they gave him the happy juice.  He kept asking to go to sleep while we were waiting.  After about 30 minutes they came for us and we walked to the OR.  As soon as he saw it, he started getting upset and crying.  The staff was wonderful and let me hold him the whole time until he was asleep.  They tried to convince him the mask was good by having everyone smell it, but he wasn't buying it!  When they finally put it on him he cried and thrashed for about 20 seconds and then he was out.  And now I sit here in a fairly crowded waiting room for about 3 hours while this is implanted into his head.
The technology is quite astounding, really!  The round part has a magnet in it and gets attached to his skull, behind and above his ear.  The coils are electrodes that go into the cochlea and act as an artificial cocheal, if you will.  If you don't know how hearing works, here's a quick explanation: Sound goes into your ear canal and hits your eardrum.  The eardrum vibrates the small bones in the ear called the hammer, anvil, and stirrup.  The stirrup vibrates the cochlea, which is the part of your ear that looks like a sea shell.  It has little hairs inside, and the cochlea sends sound signals to the auditory nerve, which sends the messages to the brain.  So the implant gathers sound from the processor -
that is worn over the ear.  The round part attaches via the magnet to the internal device above.  The processor sends the sound signals to the electrodes in the cochlea and directly to the auditory nerve.  
When everything works correctly, a person using a CI has full access to sound and language, but it is different from regular hearing.  It produces a digitized sound, from what I've been told.  

Now the audiologist will test the internal device today, while James is still in the OR.  But he won't get the processor until October 23rd, his activation day.  Everything inside has to heal before the processor can be used.  Once activated, it will take quite some time before James understands what he's hearing.  Think of it like a newborn.  They can hear, but everything is just noise.  It takes months before they can understand words and distinguish between sounds.  With James, it will be like that and then some.  His brain has gone a long time without any auditory input, so he has a lot of work to do to learn to hear.  And while some kids with CIs do learn to talk and develop clear speech, others don't.  We have no way of knowing which of those James will be, but if you know him, you know he's a "talker," so we are optimistic that he will be motivated to learn to speak.  Either way, signing will be a part of his life, and our lives, because ultimately he is still a deaf child.  So if you're thinking that his CI let's you off the hook for learning some sign language, it doesn't!  :)))

Wednesday, September 11, 2013

The Secret Keeper

I recently finished another of my free-for-review reads from Bethany House publishers, Beverly Lewis's newest release called The Secret Keeper.  If you are familiar with Lewis, you know she write novels about the Amish that, for me, are quite addicting.  While I do not agree with all the Amish's beliefs, I do think they are on to something with their simpler lifestyles.  Anyway, this newest book has a bit of a twist in that the main character, Jenny, is English (not Amish) but desperately wants to be Amish.  She has to go through a Proving time, proving that she is willing to leave behind all the trappings of her former life and embrace the Old Ways.  In the meantime, she learns a secret that she should not know.  Telling this secret would destroy a family, but keeping the secret will mean risking her own acceptance into the community.  I thoroughly enjoyed this book, as I have all of Lewis's other books.  It started me thinking about secrets, how we all keep secrets, and how very few of them are actually good.  I'm not even all that thrilled with surprises, which are a good kind of secret, so I tend to think that secrets generally serve no good purpose.  Secrets, when kept, can hide painful and shameful memories and prevent the wounded person from finding healing.  When such secrets are revealed, often many years later, even more people suffer hurt and shame that might not otherwise have happened had truth been told from the beginning.
At the same time though, I know that I am very guilty of keeping secrets - my honest thoughts and feelings, opinions, dreams, fears, and so on.  I do not like to expose to myself very often or to very many.  And more often than not  sometimes, it backfires on me when I do. But I am learning that this is not a good reason not to share myself with other people that have proven trustworthy.  You never know who will benefit from what you have to say, or even you yourself might be blessed and find healing in the end.
I also think about my James, and so many other children like him, who keep the secrets of their years prior to adoption.  I hope that someday he will have the language to reveal those secrets - what life was really like in the foster home, how he felt when we came and took him halfway around the world, and how he feels about his new life now.  I know he holds so many memories that can't be expressed yet, and I know he will have just as many questions!
Speaking of James, he is doing pretty well.  I think we might be getting past the most recent period of grief, but I fully expect another one to happen at the end of next month, which will be the anniversary of Tom's (foster dad) death.  Even though James doesn't know he died, James knows Tom was there one day and then gone the next, never to be seen again.  And some day I will have to explain what actually happened to daddy Tom.  But we will cross that bridge when we come to it!  In the meantime, we look forward to getting cochlear implant number one, along with some more much needed dental work.  Therapy through the AIU continues, and he is doing well, and making a lot of progress in language.  Although more often than not, I still have no idea what he's trying to tell me!  But he is trying, and that's what matters most at this point.  He enjoys going to Sunday school, and last week I let him try the Wednesday night class for his age.  He seemed to have fun, and he even paid a little bit of attention to the story!  And he wasn't a complete wreck on Thursday, like he usually is after a new experience.  We are still waiting on consent to finalize from the ICAB, and it really needs to come soon if we are going to get the paperwork in on time to get things settled by the end of the year.  This has been such a long process!  The short stay in-country was nice and very easy as far as the other kids were concerned, but I don't know if it was worth the long wait to have everything final.
I'd leave you with some pictures, but I don't have any loaded onto our new computer yet, so you'll just have to wait!!