Thursday, March 26, 2009

Joy and Pain

We arrived at the hospital at 8:45am Wednesday morning. While walking up the skywalk Jeremy and I found ourselves reflecting on our trips to Guatemala. The types of butterflies and the "lets just get there" feelings were oh so similar.

In the Day Surgery admit area, AJ weighed in at 19 lbs 15oz. We don't care that it was a different scale than the one in the GI Clinic-this scale-on his surgery day-said he had gained 7 ounces in around 6 weeks. Sounds good to us. That was a great way to start our day.

His nurse got us ready to go in no time. You'll notice AJ had his electric toothbrush with him. It kept him occupied and cracked up the staff. All of a sudden, he was given the "joy juice" (Versed) and being wheeled down to the OR "holding area." I started to tear up on the way to the elevator.

When we arrived in the holding area, we saw AJ's surgeon, Dr. Wackym right away. I felt an instant calm come over me. I've said all along that we weren't nervous about the surgery itself, but seeing him just gave us that extra sense of "Whew. We're here. It's happening. He's right there in front of us." He marked AJ's ear with his initials and we chatted for a moment. We had a moment to ourselves with him. I held him tight and closed my eyes, trying my best to savor the moment. From here on, my son's life was going to change. FOREVER. AJ was cuddly, which we thoroughly took advantage of. We then met and spoke with AJ's anesthesiologist and the OR nurse. AJ does not "get loopy" on the Versed. He fights it and was still trying to climb/scoot down the bed to get down to the floor. The OR nurse decided to carry him to the OR. I appreciated that.

As I saw his nurse turn the corner with him I looked away and set my eyes on the next step of our day. Walking into the surgical waiting area, signing in, getting a pager, and high-tailing down to the cafeteria. (Thank you to Grandma Nutt for snapping a picture of the nurse carrying him!)

We spent a while down in the cafeteria playing cribbage and having lunch. When the two hour mark hit, we got ancy and headed back up to the surgical waiting area. I don't know what it is about these areas, but they leave something to be desired. There is a heightened tension in these rooms, for obvious reasons. If the hospital staff member has stepped away from her post, parents are asked to answer the phone. All of a sudden the phone rang, a parent answered, and said aloud to the room, "Alejandro's parents?".

We just about jumped out of our skin...and literally out of chairs. On the other end of the phone I heard the voice of the CI audiologist in AJ's surgery.

She said...

The cochlear implant is in.

AJ IS HEARING.








That was my pause for reaction.

I replied with "REALLY?!" No Heidi, she's going to lie to you. DUH. But honestly, not once, have I EVER heard: YOUR SON IS HEARING. Until yesterday.

Jeremy beamed a smile to match my own and said "You don't get to answer the phone anymore." (Did I mention that when the surgery scheduler called with the new surgery date I told her to "Shut Up?!" in all my excitment? Oiy)

We shared the news with Grandma and Grandpa and waited for Dr. Wackym to come out of surgery to chat with us. About a half hour later, he did. AJ's surgery went like clockwork. They were able to get FULL INSERTION of the electrode array into his cochlea. Excellent news. The device was tested and his brain/nerves responded to sound. Holy cannoli, my kid heard sound. He doesn't know he did, but I KNOW HE DID. We were given paperwork and told they would call one of us back to recovery soon.

While we waited once again, I found myself reciting what the audi had said to me on the phone. AJ IS HEARING. AJ IS HEARING. Soon my eyes began to tear up. I find that in as much as we are open with AJ's journey, I still find times when I want to feel/experience a moment that is all my own. Never EVER has someone told me my son was hearing. AMAZING.

For some reason, I chose to go to recovery to be with AJ when he woke up. This is usually something I would have Daddy do. And I don't even know the reason for that. Recovery is where our difficulties began.

(Note: the following 4 paragraphs contain details of AJ's difficulties post-op...just incase you choose not to read or don't care for the details).

I walked in to see my baby boy with that famous white bandage around his head. Thank goodness we have reviewed countless blogs with pictures of other kiddos with CI pressure dressings on their heads. It looked normal to me! As he woke up, he bled from his nose tube, his heart rate spiked alarmingly high as his oxygen level dropped at almost the same pace. After more pain medication was given (twice with a visit from the anesethiologist), and I rocked him, his heart rate decreased and his oxygen level normalized. I have no idea how I kept calm, but I do know that he was the best place to be in case something like this happened. When you have five nurses around you who are there to tend to your kiddo, a sense of security comes. At least for me. When he stabilized, we all decided we needed margaritas. :) That was the beginning of thankful prayers that our CI program has children stay overnight after surgery.

He was moved back up to Day Surgery about a half hour later. He slept comfortably for the first few hours and then began to vomit blood. We weren't scared about it actually happening, we wanted to know why and where it was coming from! For some reason we did not realize this would/could happen...and can happen with this type of surgery. With the area of the incision, often blood drains into the eustation tube and has to go somewhere. It often drains into the stomach, which causes irritation, resulting in vomiting. This continued off and on until midnight, at which I was able to feed him a crushed up popsicle. He was not interested in eating before that. I knew the pressure bandage would cause enough pressure to make him not want to drink.

He was pretty wiped, sleeping and waking only to fuss when it was time for pain meds and/or nausea. I tried to catch some shut eye as much as I could. He was in a crib, which made us nervous since he's now in a toddler bed. Once we realized he was too tired to climb out or even sit up, we calmed. We felt so bad. He was so hungry (36 hours w/out anything) but couldn't keep anything down. We cannot imagine if we had brought him home after surgery and all of this had occurred.

The Day Surgery nurses were awesome! You can have some pretty awesome conversations at 230am in your PJs with those ladies :) They were very good to AJ, and to me, for which I am very grateful. AJ took a nice "nap" for two hours in the early morning, which was a blessing. I woke up to Daddy walking in the door with a Starbucks for me. Sweet. Around 8am AJ awoke from another short nap and we attempted to feed him ice cream. Bad idea. Just as we were telling the residents he had ice cream to eat and kept it down. Yeah. They decided to keep his pressure dressing on and told us they may keep him longer if he does not eat or drink omething substantial.

They changed his nausea medication, administered it, and he was out like a light. He took a great nap. His stats were down to regular normal ranges which told me he was much calmer and getting the rest he needed. And then my AJ woke up. Full of gusto and glory. Playing with his toothbrush (which by the way his surgeon told us he held onto right up until he went to sleep for the surgery), trying to get out of bed, STANDING, causing a ruckus. That's what we had been waiting to see. The new anti-nausea drug seemed to be working and we were thrilled. We tried more popsicles, mashed potatoes, and finally his Pediasure. The residents wanted him to drink something. Due to the pressure on his head, that so was not happening. He did well with all of the foods and the ENT resident came back up to take one last look and take off his dressing.

The incision was much larger than I had anticipated, but very well done. We will be trimming/buzzing his hair, seeing as we have him wear it "long" and they shaved virtually the whole right side of his head. Looks odd. There was minimal swelling, but they were ok with that. He was on regular Tylenol by the time we left. We were released from the hospital at around 2pm.

I don't know why being in a hospital makes you feel like you've been in a time warp. It is extremely odd. It was wonderful to feel the sun, fresh air, and most importantly, see AJ in his carseat! Heading home...

He had a great first night home. He started playing and WALKING AROUND right away. It was very important that he was up and moving as soon as possible. Auntie Jodi came over and cooked an awesome dinner for us. Thanks Jod! He ate a nice dinner and went to bed like a champ. Grandma and Grandpa have been here from Iowa since Tuesday and have been a tremendous help and support. It makes us a bit nervous that there isn't anything covering his head anymore, but its growing on us. We awoke this morning to an escaping AJ who was in the kitchen playing....when he was supposed to be in his room sleeping. He's doing GREAT! Getting into trouble, as usual. :)

Thank you to everyone for their support, kind words, and prayers. We truly appreciate everyone's interest about AJ's journey.

We cannot believe we are "on the other side of the fence." Our son has a cochlear implant. I told someone today "My son received a cochlear implant on Wednesday". Wow. Watching AJ today, you'd never know he had surgery a few days ago...unless you look at the surgical site itself. He is in great spirits!!

AJ's ACTIVATION in scheduled for the morning of April 20th! 24 days and counting!!

Enjoy the photo montage! NOTE: Please begin the montage and playlist (one song only) at the same time. I'm too lazy to upload the song and set it to the montage so this is my quick fix for the time being. We know everyone is anxious to see pictures!

Get a playlist! Standalone player Get Ringtones





8 comments:

  1. Wonderful Blog!! You are an amazing and wonderful mom!! Love the "chasing car`s song", one of my fav`s!!=)

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  2. So glad he's home and back to himself! Activation will be here before you know it!

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  3. What a beautiful, poignant post that really illustrates the emotional day when your child has cochlear implant surgery. I loved the photos too. :) Thank you for sharing such an incredible day.

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  4. Congratulations, AJ, Heidi and Jeremy! We can't wait to talk to you ON THE PHONE! 3 more weeks!
    Love, The Codys

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  5. Thank you for sharing your story!! My son will be activated with his 2nd C.I on April 20th too!! Angela

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  6. Hello AJ's Mom and Dad,

    I am a blogging CDHH parent too! Amy L. told me about your site. My boys are in the morning communication group. Sounds like your post op was a challenge- we agree that the nurses at CHW are amazing. And don't even get me started on my adoration for Dr. W! Your blog is wonderful. I can't wait to read about his activation.

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  7. Great post, thanks for sharing. CONGRATULATIONS!!

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