Post-Op Report

AJ's surgery went extremely well last Wednesday.  They rolled him in at 12:20 and his surgeon came up to chat with us at 3:15.  They got GREAT responses when they tested the device in the OR.  This is amazing considering there usually isn't anything "great" about the left side of AJ's body.

He did much better in recovery and was still snoozin' when we rolled him up to his penthouse suite.  AJ's room was located in the new West Tower at Children's Hospital of Wisconsin.  It.was.awesome.  The floor was bright and cheery-it didn't look like a hospital at all.  The rooms had 2 flat screen tv's, one for the patient, one for the parents.  The couch folded out into a double bed for parents to stay over and all rooms had wireless internet.  There was a family room, which was a place to hang if you needed a break but still wanted to be on the floor.  There was a playroom and a nutrition room.  A whole room stocked with goodies for the kiddies while they were in the hospital. Someone REALLY thought this through-which us as parents truly appreciated.

The staff, as always, was INCREDIBLE.  With Jeremy being an RN, we form this odd relationship with the staff.  Odd but good.  I think of all, the night nurse was our favorite. 

We had an awesome view of Wisconsin Avenue.  While AJ played a rousing game of hold me standing, hold me in the recliner, give me medicine, give me a popsicle, hold me while I sleep, put me in bed to sleep...Jer and I took turns comforting AJ and giving the other a break.  Breaks included, the baseball game, my New Moon DVD (it was very relaxing actually), and posting updates to family and friends via Internet.

AJ woke up from his longest nap (2-6am) and decided to pull down his dressing.  YEAH.  That was fun.  The resident ENT replaced it with a different type of dressing, which had adjustable velcro...that one was even easier to take off.  He thought he was feeling better and went a bit overboard, so after another round of anti-nausea meds and a nice long nap, he woke up to the AJ we all know and love.  He snatched (really he did) his toothbrush from the tray and demanded his sausage, along with signing "eat".  Ok then.  He sat up in bed and watched cartoons.  We left at 10:30am the day after surgery.

I'm still in disbelief he's bilateral.  Really, there's another piece in there?  Hm.  Come June 8th I'm sure I'll be singing a different tune.  I did have a moment in a restaurant today: It wasn't particularly loud, but loud enough.  I wished for a 2nd implant, so that he would be able to hear us in noise, then realized he has one!  A little bit of a brain fart turned into a wonderful epiphany!  We put a new ticker on top of the blog to countdown the days until his 2nd CI activation.

AJ's doing very well. His incision is healing incredibly well and he was off pain meds the 2nd day after surgery.I've been a bit obsessed with his incision, as the first surgery it was much larger than what I was expecting.  This one is smaller and healing at a record pace! We see the surgeon for a post-op visit on Tuesday.

A big thank you to our visitors while AJ was in the hospital!  Both of our Mom's stayed all day with us-which was a great support for Jeremy and I.  AJ's teachers came and brought get-well cards from his friends at school...SO CUTE!  AJ's audiologists came up and visited with us. Pea's Mom came...and brought me Edward!  I mean...she brought AJ a Brewer's blankie, a much needed Starbucks for me, and a card with Edward on it :)  Thank you to everyone's prayers, well wishes, and positive thoughts!  We feel the love people!!!!

I have SO MUCH to update. My poor blog has been neglected. It will have to wait another week or so. AJ's IEP is this Friday, so we're focusing on that. Until then, here's a photo of our little man from today. He's doing great!

Twas the Night Before Surgery...Again

There is simply not enough time to backtrack and explain the last few weeks, or months, or whatever time period has lapsed since my last "meaty" post. 

In short, AJ's 2nd cochlear implant surgery/device (left ear) was approved in record time.  Two weeks!  Not only that, it was approved by our primary and secondary insurances, which was a huge surprise and a HUGE blessing. 

AJ's surgery is tomorrow.  Another surprise.  We were scheduled much earlier than we had expected.  Everything has happened at a very rapid pace, which is good...yet crazy!.  Jer and I feel like we are riding the American Eagle rollercoaster at Great America...holding on only with our hands on the back of the cars, hanging on for dear life.  Rickity, unpredictable, unstoppable mixed with one hell of a rush.

AJ's annual IEP is next week.  No pressure, right?  Trying to focus on the both things has been challenging, but we're doing our best. 

I just watched the video we made from AJ's 1st cochlear implant surgery.  Amazing.  He's grown into such a little boy, such a little man.  A little man who recently (the last few days) finally decided to communicate with us.  A little man who continues to defy the odds.  We are so proud of him. 

AJ's activation of this ear will be on June 8th (our 9th wedding anniversary).  Having bilateral implants will give him the opportunity to localize sound (stand on the curb and tell which direct a car is coming from) and to hear in noise (he can't hear jack in a noisy restaurant).  We'll have double the equipment.  A double critter clip.  Double the audiological appointments.  Double the miracle of our deaf son being able to hear.

Tomorrow will happen.  We will load up, drive to the hospital with the Grandmas following us.   We'll check-in, put on the silly ridiculously tiny hospital gown, and ooh and ahh at the blood pressure/PulseOx machine with its fun red lights.  We'll give him the joy juice and walk him down to surgery holding.  We'll mark his left ear and kiss him as we hand him to the OR nurse who no doubt, will probably be the same one he's had everytime he's been there.  We'll know he's in good hands and fill our tummies with breakfast, as we probably won't eat again until late at night.  We'll sit in the cafe until I have that "feeling" that its time to head back up the dreary, very non-comforting waiting room.  We'll do what we do because....thats what we do. 

How's that for simple. 

We'll let you know how it goes...please keep AJ in your thoughts and prayers tomorrow.

Like Family

We walked into Children's Hospital bright and early yesterday, checking in at 6am.

The day before, one of the Day Surgery nurses had called to go over when to stop giving him solids/liquids, etc. She quickly figured out we have been through this before and seemed happy she could save her long "speech".

As we were waiting, we saw a nurse we thought we knew walk by the front desk. Jer and I turned to each other and asked if that was so-and-so. Hm. She had been the last nurse we had before being discharged after AJ's CI surgery. We checked in and again, surprised the nurse when we knew to come back out of the weigh-in area and that we'd be going to a POD.

Sure enough, we were right. We asked if it was Nurse X and were told it was. Five minutes later she was running into our room, so excited to see us. AJ looked much different than he did the last time she saw him. She thanked us for the thank you note we sent. That made my day. We had make some fingerpaint art and then cut it down to size and mounted it on cardstock to make thank you cards. As we went throughout AJ's CI surgery, I made mental notes of who was who and sent each of them a thank you note. She told us it made her day...normally they only hear about "bad things" or how things went wrong. I seriously do not think I would have survived that night without those wonderful nurses. They were AWESOME. Sure we remembered her, but she remembered us as well.

That nurse happened to be working in the surgery holding area that day so she returned to her area and his nurse for the eye surgery/circumcision administered the joy juice.

Nurse X came to take us down to surgery holding. We were in the same "slot" as we were for his CI surgery. She was seriously excited to see us again and have a chance to chat. It was so quiet. We were the only ones down there for a good 20 minutes. AJ's ophthalmologist came in and greeted us. The urology resident soon followed. Soon after the anesethiologist came around the corner...and what do you know, it was Dr. A. She also did the local for AJ's ABR. Ok, this was just getting weird! The surgery nurse came in and it was T! The same nurse AJ had for his CI surgery. Ok, he's in good hands. Dr. A beat T to the punch in carrying AJ into the OR. AJ was lounging on Dad's shoulder while all of this was taking place. We left laughing and giggling, which was relief incognido.

Despite all of the light-heartedness above, we were sure to ask Dr. A to please refrain from using a particular anti-nausea drug and go with the 2nd choice right away. We also shared his post-op experience for his CI and warned of his tendancy to hold his breath and desaturate in the PACU (Post-Anesethia Care Unit).

We went down to the new main entrance and ate in the new cafe. WOW. What a beautiful space. We floated back upstairs when I got my "itch" (signal where I become distracted and know its time to go). We ended waiting in the surgery waiting room for quite a while. We received updates on both procedures from both doctors relatively quickly after our return upstairs. All went well and we received post-op instructions.

We waited for what seemed like forever for the call allowing one of us to go back to the PACU. I took a deep breath as those automatic doors opened. AJ was already awake, and honestly looked like an airplane. He had soft splints on his arms to keep him from rubbing his eyes. His eyes were normal, heust ointment in them. We were back up in the Day Surgery area five minutes later. Huh? Ok, I kept thinking something odd was going to happen as I was carrying him.

Within 15 minutes he was sitting up, drinking juice, and playing with toys. AMAZING. A totally different post-op experience. Much much better. We were discharged and home by 12noon. He had a good rest of the day. Tired...and only tried to rub his eyes a few times. He's not a big fan of his eye drops, but what kid is? He was up and walking after his nap yesterday and did the same today. His ophthalmologist even called later that day to personally check on AJ. We went for his post-op appointment today and she was pleased with the results.

A muscle was cut in each of AJ's eyes. The incision is made in the "white" of the eye, under the lower eyelid. The muscle is cut, realigned/repositioned straight, then reattached. Dissolvable stitches are used and antibiotic eye drops are used. Quite an amazing process...that results with nothing on your eyeballs.

AJ's eyes now move together. It is the NEATEST thing. He now has better depth perception, which is the reason he was freaking out a little bit last night when staring at certain objects. His ophthalmologist also shared that he won't need vision therapy in school. YAY! We won't know the full result of the surgery for 6-8 weeks. But, his eye doc is pleased with the results and everything looks great so far.


We are so thankful that yesterday was a pleasant experience. Whether we admitted it or not, we had anxiety about yesterday. A different anxiety than what we went into his CI surgery with. We are thankful for AJ's "family", "team", "providers" at Children's. It truly is an amazing place and we are so blessed to have such a place so close to where we live. And yes, another round of fingerpainted cards will be sent out soon....

Special thanks to my Mom for getting up so freakin' early and staying with us through AJ's surgery. You ROCK!

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!

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