Discussion of the Owies

Sheridan's open heart surgery to repair his four congenital heart defects was back in May 2010, a full 18 months ago. His recovery was quick and amazing. And he never really paid much attention to his resulting scar, until now.

His Becca's dad (Mr. Jimmy) had his third open heart surgery about a month ago. One of Mr. Jimmy's first requests upon his release from the hospital was to see Sheridan (Sheridan really is a true member of their family). And Sheridan saw Mr. Jimmy's "zipper." And the two of them had a conversation about each other's "owies." So, for the first time, he had an interest and cause to talk about his scar.

I can't explain why, but I'm really happy that Sheridan is talking about it. Maybe it's his awareness that he's not the only one who has a scar. Maybe it's because I get to tell him what an amazing little man he his - a true Big Boy - that he had surgery and was tough and now he's ok. Better, even. 

The only drawback to this new-found interest: Sheridan is intent on finding an owie on everyone now. Ladies, be warned. He will try to pull your shirt down to look at your chest. He's only looking for a scar, though... I think.

I showed him my scar from a laparoscopic surgery I had on my stomach years ago. He likes to talk about "Mama's owie" and "Daddy's owie" (remember Gary's life-saving surgery on Sheridan's second birthday?) and his own owie. It's interesting to see how important it is to Sheridan that we all have owies, even if they are different. Almost like it's comforting, but also because he really likes to be just like us.

I'm curious to see over time how he reacts to (or doesn't care about) his scar. It was one of my biggest concerns before his surgery, and even after meeting a young man who was proud of his scar, I was still concerned for Sheridan. Now I don't give it a second thought, even though it is quite large and noticeable (he developed a pretty significant keloid). Check it out for yourself in this video I posted six months ago.

He's definitely gonna rock that scar, his girlfriends will think he's SO cool for having it, and he'll take comfort in knowing he's not the only person with one.

Right Before Surgery

Ignore my singing and just focus on the cute little man :)

Rewind: 24 Hours Post-Op

I promised more details about Sheridan's surgery, so here's the first installment - the first 24 hours after the surgery.

Rockin' the green toe nails on the day of the surgery - I had to represent with Sheridan's color!

The monitor in the waiting room showed each child's status (each child had a code that only the family knew). Sheridan is highlighted there (#2864) and next to his code it said "Surgery Start" - that meant that they had begun the actual procedure (incision was made). It was nice to have something where we could see some basic updates - but nurses and physicians assistants called to give us updates frequently, and a couple times even came out to tell us how everything was going.

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Here he is, about 90 minutes after surgery...

...sometimes eyes closed, sometimes eyes open but pretty vacant (he was pretty out of it coming off the anesthesia, etc.), but he would make eye contact briefly, and even gave my dad and step-mom a smile when they went in to see him. I was expecting more of a "puff" factor - so many babies (and adults for that matter) can be pretty bloated after surgery, but Sheridan wasn't at all. 

The only thing we didn't see was his breathing tube - they extubated him (took the breathing tube out) only ONE HOUR AFTER SURGERY. In fact, it took us longer to see him because they extubated him and he started rolling around in the crib, etc. - the nurse said he started doing "whirlies" - not sure what that means, but she was Australian so maybe somebody can translate :)  They had lifted the sedation (you can't take the breathing tube out until people are "aware" enough to breathe on their own) - and when they did he just woke up and went gang busters on them. It took almost 90 minutes for them to get all his IVs, tubes, etc. transferred over to the ICU poles, devices, and monitors, and to get him settled in. Then we finally got to see him.

After Gary and I visited we let the grandparents and my aunt rotate in so they could visit Sheridan. You can see the surgical team attached his poster to his crib so the ICU staff would see it...

What they didn't know is that I had a different sign for the ICU nurses with a slightly different message :)

Lots of IV meds (e.g., calcium because "hearts love calcium" as his nurse said; milrinone to help blood flow through the body - keeps capillaries and small vessels dilated so blood flow is good and easy; saline). Lots of tubes and wires. And equipment to measure each chest drainage tube and urine output (top right pic below).  

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Sheridan had seven (yes, 7!) IVs: one in his neck (his central line), one in his left hand, two in his right hand (one was a regular IV, one was an arterial line in his wrist so they could draw blood, etc.), one in his left foot, two in his right foot. And see that glowing red big toe (bottom right)? That's how they monitored his blood oxygen saturation. That was the last thing to come off before we left the hospital :)

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Sheridan spent most of his first 24 hours with a nurse dedicated entirely to him and only him. And we had a private room - I worked endlessly with the social worker, child life specialist, nurse manager, etc. to try to ensure he would have a private room. He is still sensitive at times to other children (especially when they cry or make loud, unexpected noises) and when he loses it, he LOSES it. And everyone was worried about what that might do for his pain and keeping his heart rate under control, etc. So, because they had space and no other child had a medical need for the private room, Sheridan got it. And the nurses were glad - they told the managing nurse, docs, and others that Sheridan was ULTRA sensitive to noise (they would just open a drawer to get something out and he would wake up and start crying) - so everyone agreed it was the best place for him so he could focus on healing and stay calm. 

Here he is the morning after... smiling, playing, much more interactive... and enjoying time with his Nonna!

Because Sheridan was doing so well, they moved him to the Level 2 ICU (still in the same "ward" - just 2 rooms over from his first room - but now his nurses cared for him and one other baby). Before they moved him they took the cuff off his left arm so he could bend it and get more comfortable, and start using his left hand (although, he is right-handed).

In his new room he snuggled in with his seahorse (a Christmas gift he received from Becca) - it really comforted him, along with the BEST pre-surgery gift EVER from his buddies Joaquin, John Michael, Gracie, and Gabby. Read more about the quilt - it was truly a remarkable gift and kept Sheridan so secure and cozy.

 

The sleep you saw in those two pictures was pretty rare... he shared this new room with another baby - she was much younger and actually REALLY quiet (they had a patient who needed to be in isolation so Sheridan was moved to a new room with 2 cribs, divided by a half wall). It was pretty tough on him (and the nurses tried their best to protect him): it wasn't the baby, it was all the docs, and nurses, and specialists, etc. Sheridan's roommate had a LOT of people in and out around the clock and they don't try to speak quietly (why should they? seriously, I was never mad about it, that's just how hospitals are, but in the 24 hours he shared this room he slept no more than 1 hour at a time - and often he would be startled awake 5-10 minutes after falling asleep and then again 15 minutes after putting himself back to sleep - it was a nightmare because he was so desperately tired but couldn't actually get good sleep). But, we made it work and did our best to help him rest. I think they picked his roommate because she was such a sweet, quiet little thing :)

Here you can see where they took his central line out of his neck - I finally got the last of the sticky-goop left by the tape off TODAY (more than 2 weeks later)!

The next time he woke up I finally got to hold him! It was a traumatic experience, in all honesty. He was still hooked up to some IVs, had all but one of his lines still in, had both drainage tubes - the nurse tried to organize everything while I sat in the chair waiting for her to place Sheridan in my arms. He cried uncontrollably - the tubes hurt (they were his biggest source of pain the whole time), he was scared, the nurse was a bit frazzled (not in a bad way, she just wanted to hurry and find a way to get him in my arms so he would calm down and wouldn't be upset anymore). The nurse was struggling to make it happen - she had a hard time figuring out the best way to pick him up with so many tubes. I got so scared and anxious for him that I was freaking out. I told her to hurry up (I didn't want Sheridan to be this upset) and either pick him up and give him to me, or just stop and we could try again. I just needed him to be okay. Luckily she was able to scoop him up and I got to hold my baby - I was nearly in tears and he was so happy for me to hold him.

by the way, notice he's off the oxygen

they weaned him off oxygen in under 24 hours

 

There's not much you can do with a baby on bed rest and who is tied to machines, tubes, etc. We brought 2 suitcases for Sheridan - a large one with a bunch of toys, leg warmers, books, activities, snacks (for him and us!), etc. that stayed at the hotel, and a small carry-on sized bag that we used to bring what we needed (for him and us!) for the day. It allowed us to rotate books, toys, etc. to make sure we had something to keep his interest every day. Of course, a few favorites stayed in the hospital bag every day we were there, including Hooray for Fish! - he LOVES this book. And the little fish is on every page so when we ask, "Where's little fish?" he will point to it. Books and music were the biggest hits while we where there. No surprise, they are the biggest hits at home, too.

Next up: the next 24 hours, including the first peek at the scars...

And by the way, fell free to ask questions - ANY questions - especially if you are getting ready to go through this. I'm more than happy to answer them!

My HERO

Exactly three and a half (yes, only 3.5) days after being rolled out of the OR into ICU, Sheridan was discharged from the hospital.

We walked out those front doors and he waved and said bye-bye (actually it's more like buh-buh-buh-buh-buh-bah, but he's working on it!).

funky picture of me, but I love his fresh-out-of-the-hospital-crib look

He slept the whole way home. And arrived to the BEST homecoming EVER! Becca and her family made heart streamers and decorated the outside of our home.

And filled the living room and breakfast nook with helium hearts, stars, and a monkey with a "welcome home" balloon.

Here he is walking with Gary to the front door (showing off our new landscaping we did a few weeks ago).

I grabbed a quick shower (trying to scrub the hospital off me, yuck), and when I got out I heard the tell-tale sound of crawling pitter patter. I couldn't believe it. Yesterday he didn't even have full head control back (more about that in another post), this morning he could barely sit without some support.

Yet this afternoon, within 10 minutes of being home, Gary laid Sheridan on his back on the ground, and Sheridan rolled over on to his tummy, popped up on all fours, crawled out of his room out to the living room, pulled to stand on one of his music tables, and pushed it across the room to walk.

HOW FRICKING AMAZING IS THAT?!

He is still a bit wobbly at times - still trying to regain his balance - and he's not quite as fast as he was right before the surgery, but he's only a little bit slower. This evening he just picked up right where he left off, really. He even helped me with the dishes.

He's even experimenting with standing independently for 2-3 seconds at a time, and he'll take an independent step to cross over to something he wants. It makes me nervous so soon after surgery, but so far he's doing fine...

Just a few more things before I sign off:

1. I apologize that I didn't do updates throughout our stay at Stanford like I planned/promised. I didn't have as much down time at the hospital as I expected (everything just progressed so quickly), the wifi throughout the hospital was spotty and even where I could access it the connection was painfully slow, and there were no electrical outlets for me to use in Sheridan's rooms (I stayed with him around the clock and outlets are for medical equipment only - they had them locked even if they weren't being used)
2. I have LOTS of pictures and information I plan to share about the surgery, Sheridan's progress, etc. So I definitely DO intend to share everything, it will just be little more retrospective than planned.

Also, I just want to say that we appreciate all of the love and support we received from you. There is no way I could have survived this without it - especially our family who traveled to be with us the day of the surgery, and my mom who stayed 4 days so she could support me and Gary. A special thank you to Jen, Monica, Sheree, and Jonna who created the best gift a little boy in need of lots of love and healing power could get. And to Jenni whose little ones gave Sheridan a fantastic care package to help him pass the time in the hospital - everything was put to good use!

We're not out of the woods yet... Sheridan's three biggest wounds (the sternum and two drainage tube holes) have to heal over the next 6 weeks or so. There is still a major risk of infection, so your continued support is much appreciated.

Sheridan is in the OR

Sheridan is in the operating room right now. The anesthesiologists are likely just finishing getting him ready for the surgeon (it takes about an hour before they are ready to start the procedure).

We woke up at 5:30 this morning to bathe Sheridan and scrub him down with the special medicated wipes the hospital gave us. We checked in to the surgery center at 7am. They almost immediately brought Gary, me, and Sheridan back to a room to check his vitals, change him into a gown (be sure to check out the super cute pics below - that boy can rock even a hospital gown), then we went to the playroom for the kids who have been cleared for surgery. After tearing the room apart playing for a while, we went back to the operating holding room where we met the anesthesiologists (both of whom Sheridan really liked). The plan was for Sheridan to have an oral sedative so he would fall asleep with us and then they would wheel him down to the OR after he was asleep. But he was so happy, and actually reached out to one of the anesthesiologists for her to pick him up. So, she did, he smiled, and she carried him down to the OR in her arms. He didn't even look back at us. That's when I cried for a few minutes, but then I was good.

Here's a few pics from our morning...

This is the poster I made for the surgical team. The anesthesiologists carried it into the OR for the whole team to see. Just a little reminder for them about who they are working for :)

Internet access is still pretty shoddy in most places. But I will do my best to continue to post updates throughout the procedure.

Quick update already :)  The surgeon (Dr. Reddy) just came in to see us before he starts the surgery. He said he'll be starting in about 15 minutes. Lots of love to my brave baby!!!!

Surgery Check In: 7am Tuesday

It's official. We're a go for tomorrow morning.

Today was pre-op (A.K.A. 6 hours of baby torture). Sheridan had an echocardiogram, an EKG, a chest x-ray, and (the worst of the bunch) blood test. He was over tired because he only got 9 hours of sleep (he's used to 12), we woke him up uber early for the appt, and people wouldn't leave him alone. None of the tests/exams is too bad by itself (except the blood draw), but put them all back-to-back and then ask the poor kid to meet with a seemingly endless line of nurses, physicians assistants, etc. afterwards and... well... there's only so much a baby should have to endure.

But he was a total trooper, and only had a rough time with the blood draw (his blood just stopped coming out of the first vein, so they had to poke him a second time in his other arm). Gary was holding him during it, but Sheridan cried so hard he could only breathe those stutter breaths, you know what I'm saying.

Here's the only picture I took during the whole ordeal (my mom holding him after I sang to him and calmed him down - of course he immediately wants his Nonna!)...

So, tomorrow we report for surgery at 7am. Gary said I'm not acting like myself. He said my stress is showing (I was stalling Sheridan's bed time to play with him and give him way more kisses than any baby should have to endure - it just so happens he likes it).

I will say the surgical team and anesthesia team did a great job walking us through the surgery step-by-step (I have to try REALLY hard not to let the tears come when we're talking nitty-gritty of the surgery). But I think he's in excellent, capable hands.

So, as I bide time this evening, just thought I would post a couple more pics from yesterday (our trip to Stanford) and today...

Sheridan playing with his ball pits (yes, he has two - a bit spoiled, but whatever).

His favorite part is throwing the balls out of the "pit" all over the living room. awesome.

Hangin' with Nonna (I'm SO glad my mom came down with us - it's been such a help to have three of us taking turns!).

Sheridan loving LOVING the hotel room. Especially the bit mirror wall.

Just for those who care (likely nobody, but oh well), here's our hotel room (Ronald McDonald House didn't have any rooms available, but as soon as they do we'll move there). Our room is very, um, orange.

Climbing on me...

Here's Sheridan recovering from the blood draw... eating an organic blueberry Cliff Z Bar to tide him over for lunch.

My dad and step-mom (Grandpa and Nanny Airplane) came down this evening so they could have dinner with us and be at the hospital all day tomorrow. So grateful they came down and we got to spend some much-needed time with them.

And Sheridan had a blast cruising around all the furniture in the room. He's getting pretty brave crossing large gaps (here he's crossing from my mom to the coffee table).

He even took an independent step a couple times tonight. I'm so proud of him! And he's pretty proud of himself, too! Here he is clapping "Yaaaaayyyyy!" for himself :)

It's all still surreal. I'm not gonna lie. I think Gary is right, my stress is over the top. Right now, I just know that I love him, that he is loved by MANY, and that he loves us all right back. I also know he will be okay. This is not my last night with him (as Gary reminded me after I said good night to Sheridan).

Thanks to everyone who is sending me emails, posting comments, writing notes on facebook, calling, sending text messages... you have NO idea how much it means to me. I'm not afraid or ashamed to say that I need that support right now. So, thank you.

One last thing... internet connectivity has been rough to say the least (both in the hotel and the hospital). But my intention is to post updates throughout the surgery tomorrow if I am able. I know how helpful others' posts have been to me as we prepare for Sheridan's surgery, and I'm hoping that anything I can share can help other families prepare. But if internet is down it might take a couple days... I refuse to type more than 4 words at a time on an iPhone :)

Sheridan's Open-Heart Surgery

First, a ridiculously adorable picture of Sheridan to put a smile on everybody's face before they read on...

On Sunday we leave for Stanford, we have a 6-8 hour pre-op appointment on Monday, and surgery is scheduled for Tuesday.

Many of our friends and family have asked for more information about Sheridan's heart defects, how they will be fixed, etc. So, taking a cue from Pudge & Zip's mom (thank you for all your support, Courtney!), I turned to the Children's Heart Institute of Virginia for a few images to help me explain (I'm a bit of a visual learner and I thought these were great)...

FIRST, A HEALTHY HEART

Think of your heart as a house with:

4 rooms (chambers)
4 doors (valves)
4 BIG hallways (vessels)
4 little hallways (vessels)

It would look like this...

VENTRICULAR SEPTAL DEFECT

Sheridan's got two of these suckers... basically, they are holes in the wall between the two ventricles. Here's what his heart house looks like (notice the hole in the wall between the bottom two rooms):

To repair his VSDs, his surgeons will use Sheridan's own pericardial tissue to "patch" the hole. Eventually his heart tissue and the patch will become one and grow with him. Here's the best way to envision that patch job:

PATENT FORAMEN OVALE (PFO)

In the cardiothoracic surgery world, a PFO and an Atrial Septal Defect (ASD) are essentially synonymous. The terms get used interchangeably. The PFO/ASD is a hole in the wall between the two atriums (the top two chambers of the heart). Here's what it looks like using the house (notice the hole in the wall between the top two rooms):

Sheridan's surgeons expect to be able to close the PFO with sutures. No patch needed. But just for illustration purposes, here's what his heart will look like after the sutures close the hole in that wall:

PATENT DUCTUS ARTERIOSUS (PDA)

This one is a bit different. It has nothing to do with the walls in the heart. The PDA is actually something that we are ALL born with, believe it or not. It's a critical piece of fetal blood flow. The difference is, most PDAs close naturally within the first couple days of life.

Sheridan's didn't close, so now what he has is an open vessel that connects the oxygen-rich blood in the aorta to the blood in the pulumonary artery (that takes blue blood to the lungs to oxygenate it). So, his pulmonary artery is carrying some oxygenated blood to his lungs. A big no-no.

Here's a healthy heart (images thanks to the Cohen Children's Medical Center in New York):

Here's a heart with a PDA:

Sheridan's surgeons will suture this hole, also.

So there you have it...

LOOKING FORWARD 

I want to thank every single friend (including my blogging friends from around the world!) and family member that has reached out to us and shared their stories with us. Talking with parents who have had a child go through the same surgery has given us MANY tricks and tips to help us survive the waiting and healing, and most importantly has given us ideas about how to make Sheridan's healing and coping go as smoothly as possible.

I still have no idea how the surgical team will pry Sheridan from my arms on Tuesday morning, but I do feel that he is in good hands.

I will post frequent updates the day of the surgery and during his recovery at the hospital and at home. We know we have a road ahead of us, it might be short, or could be long. But I know Sheridan is super strong and healthy and will kick this surgery's butt!

Here's to rockin' the scar!