Tag Archives: cochlear implant

Gael’s Gets His Surgery

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Most of you now know the results of our long-awaited trip to Guadalajara for the Cochlear Implant surgery for Gael. It was the day we had been working towards since late last fall when we first took Gael to a doctor to find out just what was possible for him. Since then there have been many trips to many doctors in Puerto Vallarta and Tepic and Guadalajara. Tests and more tests -MRIs, CT scans, Brain stem tests, blood tests, audiology tests. Hours and hours of research to find the best surgeons, the best implant device, the best sign language and speech therapy resources. And of course, the fundraising. 5 months of events and online crowd sourcing campaigns and Facebook posts and email blitzes and PayPal transactions and bank wires. After many setbacks, many date changes and location changes and device changes, we were finally on the road to Guadalajara to have the surgery. Gael, his mom, his teenage cousin, Francisco, myself, Grant and a big red cooler – all piled into the Blue Explorer SUV owned by Manos de Amor. We had a three-bedroom Airbnb booked for 2 nights, the cooler full of important stuff like coffee and peanut butter, and Grant’s leather bag packed with cash. Yes, we were paying the hospital and the surgeon in pesos – a giant pile of pesos.

The surgery was booked for early Tuesday morning and the doctor had asked to see Gael on Monday afternoon at 5:15 in preparation. We headed out around 10:00 in the morning – certainly better than the 3 am start on our previous trip to Guadalajara. We stopped ½ way for some tortas and gorditas and were just coming up to the outskirts of the city when a warning beep and light came on. An oil light saying oil pressure had dropped. Of course. This day had been all together too smooth to be a Swanson story! Almost immediately we saw a small shop that sold oil and other lubricants – how perfect was that! We pulled in and the owner said he only sold products – he didn’t fix vehicles, but he would call us a mechanic. It didn’t take long for a young mechanic to arrive in his beat up blue half ton truck. He looked, listened and agreed that it didn’t sound good. We better not drive any further. Aargh. This was not in our plan for

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this week at all. On the up side, we had made it to Guadalajara. Almost anywhere else along the way would have left us stranded in the middle of nowhere. On the down side, Guadalajara is giant, and we were nowhere near the surgeon’s office and now we had 5 adults, 1 deaf boy, a bunch of suitcases and one big red cooler standing by the side of the highway.

The mechanic suggested we call Uber and for the next 3 days that is just what we did. In Guadalajara, Uber only uses small cars for up to 4 people so that was our first challenge. And you can’t call a second Uber with your app until the current trip is finished. So we placed our request and within 5 or 10 minutes Ana Patricia was there. Francisco and Gael and mom and cousin jumped in the car, leaving Grant and I and the luggage and of course the big red cooler on the side of the highway while Grant downloaded the Uber app on his phone. I watched as the tiny car on my phone app rushed Gael to meet Dr.

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Macias. They left us at 4:06 – arrived at the hospital at 5:18. 3 minutes late for the appointment we had been planning since last fall. Ana Patricia waited for them outside the hospital – in the end the trip was over 2 ½ hours and it cost $392 pesos – that’s about 20 bucks. For 2 ½ hours. In the meantime, Grant and I had called another Uber and loaded it up and headed to the apartment that would be home for a couple of days.

We had expected to take Gael to the hospital by 7 on Tuesday morning, but instead Dr. Macias decided to admit him Monday night, so he would be prepped and ready for the early morning surgery. His mom was nervous and scared but also excited. She and Gael were given a beautiful private suite with a separate sitting area for her to spend the night. We promised to be there in the morning when Gael came out of surgery.

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The surgery took about 3 hours and the doctors told us it had gone perfectly. While there is never a guarantee, they were confident it had been a success. We won’t know for sure until activation day which will be in 6 weeks. That is the day the device will be turned on and Gael will hear.

We were relieved and thrilled. Gael was carried back from the operating room and his mom and I shed a couple of tears as he moaned in pain. His head was wrapped in a giant white bandage. The nurses laid him in his bed and as I leaned over to kiss his cheek he reached up with his one arm and hugged me tightly around the neck. He was groggy and in pain but still the affectionate Gael we love.

I expected him to be dopey and in a lot of pain all day, but it couldn’t have even been an hour before he sat straight up in his bed, grabbed Grant’s phone and started playing Candy Crush. It was as if nothing had happened. Soon he was out of bed, entertaining us and playing with the 2 trucks the hospital had given him. He was concerned as they took his IV line out, didn’t like the teensy drop of blood that was on his hand, but he was amazing and strong and brave and was proud of his bandage when I showed him his picture.

About 9:00 that evening he was released from the hospital and we made plans to go home the next day. Except of course we had no vehicle. After many conversations with the mechanic it was determined a timing chain had broken but he promised it would be repaired by Thursday at noon. Guaranteed. We really didn’t want to keep the whole gang in Guadalajara. Our suite was not available for another day and we couldn’t all fit in one Uber so we had to take 2 cars every time we wanted to go anywhere. So on Wednesday morning Francisco, Gael, mom and cousin headed to the bus station to take a bus back to Bucerias. Grant and I found another suite in the same apartment building that was available, and we moved our suitcase and our big red cooler down the hall. We would stay for one more day – have a mini vacation – and bring the car home on Thursday.

Wednesday was a fun day. We went to the giant Guadalajara zoo and had a romantic dinner in a nearby restaurant. I was ready to be home, but this had turned into a nice bonus day together.

On Thursday morning we called our Uber, loaded our crap into the trunk and headed to the mechanic shop to get our vehicle. He said he was on track – it would be ready by noon. The first problem was that we didn’t really know where the shop was. The address he had given us was super vague. The Uber guy couldn’t figure it out. We knew the general vicinity of where we had pulled over when the whole problem started, but the mechanic had towed the truck to his shop and we weren’t sure where that was. Finally, thinking we were close, we told the Uber driver to let us out and then we piled our suitcase and briefcases and the big red cooler on the side of the road and started asking people if they knew where this shop was. Turns out we had quite a way to go and we weren’t even on the right side of the highway. Luckily there was an overpass to walk over the highway nearby, so we started the long walk to find the shop. Along the way we kept asking people where this shop was, and we got all manners of directions – all of them different. 5 more blocks. 3 more blocks. You’ll have to turn left and go one block. No, it’s on this highway. No back the way you came. We just kept walking. We piled the red cooler on top of the suitcase which promptly hit a hole in the road and dumped the contents of the #*(#**@ red cooler all over the road. Just as we were getting frustrated and a bit grumpy, we came upon the shop. In fact, we almost walked right past it until I spotted the car right out front. Still being worked on. Not quite done.

Fine. I was happy to sit for a while and wait. After a 1/2 hour or so, the mechanic guy got in and started the car. He stepped on the gas. And then we all heard it. A weird knocking noise. It didn’t sound good. Long story short….. the car wasn’t ready. It needed more work. Maybe Monday or Tuesday. Not today.

And that is how we found ourselves boarding a fancy 2-story bus heading back to Bucerias. I laughed when Grant frowned and said, “We’re not really bus people”. No, we’re golf cart people and this bus had huge reclining seats, flip out foot rests, individual TVs, and a free sandwich. A big upgrade for us!

As always, the week had more challenges than expected. It wasn’t all smooth sailing. But we arrived at the correct destination unharmed. Gael had the surgery we’ve been dreaming of for a long time. If all goes as expected, his life will never be the same. The course of his future has completely changed, and we are so grateful for your generous help and God’s provision and protection. And of course – even in the midst of celebrating, there’s another bumpy surprise! The day after Gael got home, a red rash broke out – he now has chicken pox! Oh Gael….

Gael Goes to Guadalajara

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This is an update my husband Grant wrote to tell you about our trip with Gael to Guadalajara – another one of ‘those days’!

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2 hours into our drive and the sun is just rising

As you probably read last week, we recently took a trip to visit the implant doctor and his team in Guadalajara, excited to take the next steps in this journey.  Our team on the ground here in Mexico, made up of myself and Karen (English/some Spanish), Francisco (bilingual), Gael (charade and hand signal language) his mother Mariela (only Spanish) and Laura his Manos mama ( only Spanish) left  home a little before 5 am and traveled to Guadalajara, arriving at the doctors’ offices in the hospital a little after 10:00 am.  We met the surgeon and team leader Dr. Hector Macias and discussed the process and what would be required for the final testing.  And then the challenges began—how could we not have expected challenges?

The first test we were expecting was an MRI, but we were informed that the MRI machine at the hospital was out of service and we would need to go to a private clinic—and would it be ok as the cost there was going to be over $9000 pesos?  We of course agreed, but then found out there was no availability that day—we would need to return on Monday.   Sigh.

We then met with Dra. Cynthia who was to do a computerized brain scan to test Gael’s brain for its ability to process sound.  Things then got difficult—Gael refused to sit still and wear the head phones required.  No amount of convincing by Laura or Mariela was effective.  We were told then that the test would need to be done on him sleeping and were given sleeping pills for that purpose.  Of course he refused to take them, so we then slipped the contents into a juice bottle to give him when he was unsuspecting.   Dra. Cynthia told us she was leaving at 2:00 so he would have to be asleep by 1:30 if the test was to be performed.

The third important task of the day was for Gael’s mom and Laura to meet with the psychologists who would assess the caregivers and ask questions about Gael.  We should at least be able to do that right?

Francisco and I took Gael outside to run around for awhile and see if we could tire him out.  We went back inside and as we waited for the psychologists appointment Gael fell asleep in his mom’s arms.  Great—we had time!  As Laura and Mariela were called into the psychologist’s office,  Karen, Francisco and myself attempted to carry Gael through the busy hospital, down to a different floor in hopes he would sleep through the  brain testing.

20180511_124251Of course, 1/2 way to the testing office, Gael woke up and nothing could get him back to sleep.  We chose a quiet spot in the waiting area in hopes Gael would go back to sleep—but in typical Gael style, he did not want to miss a thing.  He just stared around and watched all the activity going on around,  yawning non-stop.

In the meantime, Francisco got on the phone with doctors in Puerto Vallarta to see about an MRI there—could we avoid doing this whole trip again on Monday?  Yes—we could get one for around $3600 pesos and Dr. Macias agreed that was an acceptable option.

Meanwhile, Laura and Mariel had their interviews and came to find us.  They told us that the psychologists wanted to meet with Gael, but because he was not there with them during their appointment,  the doctors had gone home and we would have to come back on Monday at for Gael to be assessed.  Sigh again.  He absolutely could have been meeting with them since he had no intention of sleeping at all but who knew they wanted to meet with him?

Later, Dra Cynthia came by and after much conversation between her, some of her associates and Francisco she took us all back to her office to see if Gael would agree to wear a hearing aid.  They had decided that this was now going to be a requirement before an implant to ensure that he was willing to have any type of device on.  Seeing his resistance to wearing a headphone earlier had worried us all—what if he just refused this whole process?   By this time Gael had already had a melt down and was adamant that he was not interested in having another bad experience with a hearing aid.  He had had a bad experience a few months ago with Dr. Austin of Starkey when a hearing aid that was turned too loud was placed on his one ear that hears low frequencies, and the loud noise badly scared him…. (probably the first really loud sound he had heard in his life!)  So a long winded conversation occurred between the Dra.  and the mothers,  Karen and Francisco adding input.   During this time the hearing aid was passed around, everyone putting it in their ear, big smiles and thumbs up in hopes Gael could get past his fear and put the hearing aid on.  After a long time he did so, and then he liked it.  In fact he loved it!  He packed it in the little box and indicated he was talking it home.  By now all doctors involved were gone home, and Dra Cynthia was also anxious to leave.    We were given the hearing aid to take home, and told that Gael needed to wear it for a month to see if he would cooperate.   We can have the brain test done in a month—and we can get it done in Tepic if we choose.

I admit we left the hospital pretty discouraged.  We had driven 5 hours through mountain roads and were going home with no MRI done, no brain test done, no completed psychological assessment.   Most importantly, no surgery date chosen.

 

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So now we regroup, schedule an MRI locally, and reschedule the brain testing and psychological assessment for Gael.  All as soon as possible.  We also continue sign language training which has helped immensely in Gael’s ability to communicate, and according to his kindergarten teaching has done wonders for his behavioral issues.  We also will look for ways to get Gael more comfortable with a hearing aid and using headphones so he will return to being cooperative when we do the brain assessment.

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Gael is still willingly wearing his aid – a good predictor of future success!

Or, we make a plan that involves keeping him up all night so he will sleep through the testing procedure with minimum sleeping pills.  At the time of posting this update Gael has been wearing the hearing aid ever since arriving home, and he loves that it is blue.

We realize that this is a very long journey for Gael and those who consider themselves his friends.  Hearing will open up a whole new world for him,  but he is currently 5 years behind his peers in hearing/speaking and in developing certain cognitive/emotional skills.  School will continue to be a very difficult experience and probably will require additional supports that we are currently looking into.  Experiencing a single-mom family situation provides further challenges.  The ultimate question remains the same: what can we do for one of God’s precious little ones—give him the very best we can.  Stay tuned.

 

A Special Gift

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27591021_10155218685851198_145060427_nIf you’ve been following my personal Facebook page, you’ve seen the new project Grant and I and our friends Francisco and Michael have been working on – raising funds to help our little deaf friend Gael get a Cochlear implant.  Gael is one of our children at Manos de Amor and he has been deaf since birth.  He is now 6 and has only recently been seen by hearing specialists to diagnose his hearing loss.  We now know that although he is profoundly deaf,  he is a candidate for an implant – which means he WILL HEAR and speak someday.

But it is expensive – $45,000 USD for the operation and Gael’s mother has absolutely no possibility of even dreaming about such a gift.   She is young and is trying to raise two sons on a tiny salary.  That is why Gael lives in our Children’s Home during the week – his mom cannot handle the expense or his very active and unmanageable behavior, which most certainly stems from the fact that he cannot hear and has no language for communication.  He is super busy and somewhat naughty – but he loves Grant and will calm down when Grant picks him up or cuddles him.  He is smart and so badly wants to communicate.

We cannot stand the thought of this very bright boy growing up without ever hearing when we know there is a solution.  We know we are rich in comparison to most of the children in this country.  We know that all of you who are reading this are in the top few percentiles of wealth in the world.  We know that none of us blink at spending $5 for a grande non fat double shot extra hot something or other.   $20 for a bottle of wine when tap water would quench our thirst.  New shoes because the color trend has changed this season.  How can we let a little boy remain in silence?  Without words?  Without hearing his mom’s voice or his little brother’s laughter or his own voice?

If you can find a way, will you share some of your abundance with Gael?  Even if the sacrifice hurts just a bit?  Giving yourself away will always open the door to a fuller heart and deeper joy.  It’s what we were created to do.  Let’s give Gael the Gift of Hearing!!

Here are the links you will need:

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