Post Op Appointment

One week after surgery, we were scheduled for a post-op follow up with a physician assistant at the craniofacial clinic.  Tate was cranky. I think he was tired. And maybe a little mad he finally lost at a board game against my mom. (Though he confided in me that he did pretty well in poker against my dad. - Don’t worry, there was no betting!)

She removed the dressing on his hip and said it looked good. He wanted to know why it was lumpy, and she explained that skin is sewn that way because it collapses over time.

After the stitches fall out in their own, we will begin massaging the area around the scar for scar tissue reduction and to improve plasticity.

She looked in his mouth and said we need to do a better job cleaning food particles away from the stitches and the area of the graft. Which is a little crazy because he is on a full liquid diet. And he eats/drinks with a mouth guard in. So the particle issue should be minimal. Anyway, she suggested more zealous swishing and a water pick.

But he is cleared for school, which he is looking forward to.

Happy Easter!

Tate's recovery is going well.

He's been mostly off pain medication completely, with an occasional Advil.  (We finally switched to pill form this morning at his request.) We had anticipated hip pain today, when the injection given in the hospital wore off, but he seemed pretty fine.

He's been in his own bed the past couple nights, and he's been sleeping in. I had to wake him and the others up for church - but it was a good excuse for getting dressed up.

I'm still trying to figure out how to get some greens into him.  Hoping that probiotics and some spinach in his smoothies will help.  He's also figured out how to use our amazing Ninja blender to make some of his own milkshake concoctions.

Here's where we are at with the liquid diet:
So far, clam chowder has been the most successful food item.
He had chicken noodle soup liquefied today, but he said it was too hot.
He didn't like the liquefied macaroni and cheese.
We made some chips and clam dip with milk into a drink, and the flavor was good, but it was weird to drink it.

So we're still working on getting the right sweetness and consistency in food.
The best flavoring so far was the cheeseburger. We actually cut up his burger and bun and dropped it in the Ninja with some beef broth.  It was just a little warm, and it was actually quite good.

On deck this week we have more clam chowder, more milkshakes, more fruit smoothies, and we may also try spaghetti and even a meatball sub.

He's out of school until after the post-op visit. I know he wants to get back, but we have to make sure he's healthy enough and healed enough to navigate elementary school with a weakened hip and mouth.

Home at Last!

Finally at home, it was time to try some "real" food.  We started with a fruit smoothie, that wasn't very sweet. But he seemed to like it fine.

One of Tate's friends stopped  by to give him a colorful stuffed bunny and visit. Tate told me it was fine. But then he fell asleep and was super grouchy when she got here.  I felt badly about it. But she and her mom were super understanding.

In terms of medication, we were given the antibiotic, motrin, tylenol, and hydrocodone. I told the pharmacist I was hoping not to expose him to the narcotic, and she said if we could avoid it, we should.  Tate was in a lot of pain right after surgery, though, so I was a little worried about what would happen when we got home.  I didn't need to be - we gave him tylenol and motrin, alternating, for the next 24 hours. His pain level never rose above a 2 with those medications, so that was good.

The first night home, we let Tate sleep in our bed to provide him with some comfort.  I slipped out early for work on Friday morning, and Jason stayed home to hold down the fort.

Discharged!

Two of Tate's surgeons visited us bright and early at 7:00am on Thursday to check on Tate.  I started to grumble about the lack of sleep in the hospital, and then I realized these are probably two of the worst people to complain to - one a resident and the other a fellow!

They said Tate looked good and if he could hold down non-clear solids, they would release him for discharge after lunch.  The nurse would report back to them.  They showed us how to remove the mouth guard, which is basically a plastic retainer that covers the entire roof of the mouth. I think of this as a "no no" for the mouth so his tongue doesn't play with the stitches. They showed us how to use the mouthwash rinse, which Tate hates because of the inevitable spit follow-up.  And then they left us to our own devices.

Tate still wasn't 100%. He asked the nurse to please remove his IV (this was the singular thing he complained about most).  I don't blame him. I think those suckers hurt in your hand. But they were giving him anti-inflammatory medication and pain killers and antibiotics through the IV, so removing it before discharge was pretty much a non-starter.

I managed to get Tate up and walking a little.  We made it to the play room for a while, where we found a couple of eager volunteers, who played a game of Sorry with us.

That mostly tuckered out Tate, so we headed back to our space for some rest. But then, along came Polly, a dog visitor!  At check-in they gave the option of having a visit from a dog if one happened to be volunteering, and Tate happily agreed.

Polly was a definite bright spot.  She showed up in bunny ears and even convinced Tate to smile a little.

Tate and I also watched some Netflix.  One of his favorites is the movie Candy Jar.  He likes how fast the debaters talk.  The wifi kept kicking us off every 15 minutes, but once we figured that out, we were less irritated by it.

Once Tate had a couple of shakes in him, our nurse made the discharge request.  Tate napped.  We didn't really account for the location of the hip incision high on the hip, and Tate's clothing waistband sits at that spot, so they let him wear their hospital pants, which had a loose gathering.

Finally, the medication was ready.  No one every asked us if Tate uses chewable medication or he swallows pills, and we didn't think to offer the information. So when I got to the pharmacy, everything was in liquid form.  Tate hates the taste of liquid medicines, but I didn't want to mess around with the recommendations from the doctors.  So I took the supplies and left to trek to my car in the garage, where I waited in a long line to exit.  Finally, I was able to leave my car standing and the nurse helped me wheelchair Tate right to the curb where the car was waiting.

He was pretty tired, but he stayed awake on the drive home.

Hospital Stay

Hospitals are not my favorite. That said, the nurses at Rady Children’s have been amazing. And Tate has a good support system at home, too. His speech therapist sent him a get well package (which is super nice of her, but if you knew her, it probably wouldn’t surprise you because she’s super thoughtful like that). She knows Tate very well, and she sent him some baby Calico Critters to open. Which he did. Then promptly fell asleep.

When he woke up, he tried to smile for me and put on a brave face. His face and hip were both hurting, and he was nauseous. So they gave him some more medication to help with the pain and nausea. 

The hospital is on some pretty serious lockdown from visitors  because of cold and flu season. They allowed us to designate two “support people,” and my parents came by to visit. It was mostly a visit with me, though, because although Tate woke briefly, he slept through most of it. I was glad they came. I was really hungry and nervous about ordering from the hospital menu. They brought me a delicious Sprouts sandwich. 

Earlier in the day, Tate has been more alert. And hungry. We played Sleeping Queens while we waited for some beef broth and blue Gatorade. 

Tate is a snuggler. So he asked me to stay as close to him as possible most of the time. 

This was his first full “meal.” He didn’t really love it. But he drank all the Gatorade. 

Our room was pretty small. I had this chair bed to sleep on, which is where I started the night. But around 11, Tate asked me to get back in bed with him. I don’t know if they gave us a large bed or he and I are just petite enough to fit in a regular one, but I was glad. I was freezing in my chair, even with long sleeves, a sweatshirt, a fleece, a hospital blanket, and a soccer blanket. Tate runs warm, so sleeping with him helped warm me up. 

Hopefully we will get to go home today. After being awoken every two hours for vitals (and sometimes waking to our neighbor in the bed next to Tate), I’m exhausted! 

Recovery

We hunkered down for a three hour wait. Our nurse called about an hour after we said good-bye to Tate to tell us what time surgery began. And around 12:15, we decided to head over to the Ronald McDonald House to see what they were serving for lunch. No sooner had we signed in than we got a call from a surgical nurse saying the surgery was finished and they were ready to talk to us in the postop consult area.

We high-tailed it back to be escorted into our consult room. We wondered if everything had gone okay - why was the surgery so short? We’re they unable to do it? Was it simpler than anticipated?  Why?  (His palate repair also ended super early, also in about half the anticipated time.)

We waited about a half an hour for the surgeon. He explained that everything went well, and he was pleased. They used bone from the right Iliac crest. His tissue was very malleable with good margins, and that helps it all go more smoothly. He told us that scar tissue tends to bleed more and sometimes they have to chip away at it, and you don’t know what you will see until you are in there doing the surgery.

I think this bodes well for his recovery.

We knew we had at least an hour before Tate would awake and they’d let one of us into the recovery area, so we headed back to lunch (pastrami sandwiches and salad).  Then we returned to the waiting area and settled into he quiet waiting room.

Another hour passed. And now it was about the time we anticipated we’d be able to see Tate in the first place. Finally, our pager went off, two hours after the procedure was complete.

Hospital personnel escorted me back to the recovery room, where Tate’s eyes were fluttering awake. Only one parent is allowed at a time because of space limitations. So I got to go first. Tate told me he was hot and in some pain. The nurse offered fentanyl or Oxycodone (I probably have both those names wrong), and the first drug would kick in faster because it would be intravenous. So that’s what we opted for, and it took the pain down to a 2.

I wasn’t with him too long before he asked about Jason, so we swapped until Jason had to head home  to take Marcie to volleyball.

Here is Tate, just awake:

Getting Ready for the OR

They were pretty organized at the hospital.

We took an elevator to the acute care center.  Tate seemed pretty excited.

We got our visitor badges, with our pictures on them. Then we headed to the waiting area for our official registration paperwork. We passed the twenty or so minutes of waiting by playing mini Connect Four.

After registration was complete, we waited to get called back into the preop area.  We found a section near windows, where there was a pretty cool train display.  It reminded me of Casey's obsession with Thomas the Tank Engine.  We played a couple games of Sleeping Queens. 

Next we went into an area with lots of small-ish "rooms," which were more like alcoves with curtains to provide privacy.  There, the assistant checked Tate's pulse and oxygen levels.  Tate took this quite seriously.

 They gave Tate some flowy pants and a hospital gown top to change into.

And then it seemed like a well-spaced streammof professionals came to see us. There was a nurse who had us sign a couple forms about the specifics of the surgery. And the primary surgeon who stopped by to verify the form (and actually update it to allow for some flexibility.  He also put his initials on Tate’s face so they’d do the procedure on the correct part of his mouth. (I appreciate the caution, but it’d be really weird if they got that wrong even without the initials!)

Tate met with a child specialist who showed him pictures of the operating room and explained how the gas mask would work. She helped him pick out the scent he wanted.

We met with our own nurse, whose job it is to update us throughout the procedure. She said they are very short-staffed today and she is covering for others. I hope that means she is covering for other parent nurses and not that surgeries themselves are under-staffed. She told us what to expect in terms of communication.

Then the anesthesiologist talked with us. He listened to Tate’s chest to make sure it’s safe to do the surgery with Tate’s cold. He said Tate’s lungs sound pretty clear, and Tate said his gentle touch gave him “goodies.”  The surgical fellow stopped by - Dr. Hsieh - who we met way back in December.  And finally the nurse from the surgical team came by. We asked her about the antibiotics they would give Tate because of his allergies and because we don’t know his family history. And we asked about what anesthesia they would use.

When she left, she took our bright, energetic boy with her. And now we wait . . .

Good Morning- it’s a great day for bone graft surgery!

Tate is a character.
It was like Christmas morning. Well, not quite as bad. He slept in until almost 6:00am.

He practically pushed us out the door.

The Day Before Cleft Bone Graft Surgery

Because Tate's surgery is on a Wednesday, we didn't sign him up for camp this week.  His older siblings are off for spring break, so it didn't seem like it would be a good use of money.  Instead, each day, I leave each child a list of things to accomplish and a deadline for doing so.  For instance, today Tate's list said:

• Empty the silverware
• Clean up your bedroom
• Pack for the hospital (with a list of items)
• Read for 30 minutes and write a summary of the book you read
• Practice violin for 30 minutes

Complete these things before 4:30pm

I left work a little early because we had a busy evening planned.  I wanted to keep Tate's mind off the pending surgery.

When I got home, I noticed Tate had been busy in his room:

It's not the best lighting, but what you're looking at is his low loft bed, with a second mattress on the floor next to it.  Because they are slicing into his hip for the surgery, we were anticipating he would not be able to climb the three steps of the loft to sleep when he gets home.  We were planning to put the mattress on the floor for him, but I wasn't worried about the timing because I know we'll be in the hospital for at least one night.

Tate is a planner.  It's something I love about him. He noticed we had left Marcie's old mattress in the hallway (she got a new one last week), so he dragged it into his bedroom rearranged his doll furniture (you can see the 18" doll classroom in the corner), and then proceeded to make up the bed.  With sheets and everything.  He's sleeping on it now.

He also received a couple surprises today. First, one of my very thoughtful, former coworkers and his family sent a "get well" and "good luck" gift to Tate today - a Project Runway fashion design kit with colored pencils.  Tate has it packed to take with him to the hospital.  And he also got a care package from his Speech & Language Pathologist at his elementary school.  I won't let him open it until after the surgery, but it's a couple of baby Calico Critter packets, which he loves.  He is particularly endeared to his SLP, and this really made his day - all these wonderful people fussing over him!

Yesterday after work, Tate and I went grocery shopping. At the preop appointment, they gave us some recipes for liquid foods, but, honestly, it's a little hard for me to stomach things like liquefied spaghetti and meatballs.  So for the first few days, my plan is to stick to milkshakes and smoothies.  The food as to be SUPER liquid, meaning nothing he might need to chew. So really more juice-like than smoothie-like.  Tate picked out a bunch of fruits he thought he might enjoy in juice or smoothie style for his first few days home, along with some soups.  I told him he could pick anything he wanted for his last solid food meal.  At first, he asked for meatball subs. But once we were at the grocery store, he changed his mind.  Here's what he planned:

Breakfast dinner! Those are kodiak pancakes, thick cut bacon slices, sausage patties, and scrambled eggs.  (He's also wearing his Camp Cosmos shirt, which is the camp I mentioned in the last post - the one for kids with craniofacial differences.)

After dinner, we scurried out to a movie - and watched Shazam! It was $5 movie night at the theater, and because everyone had just eaten a big meal, no one wanted much concession food.

We did get one tub of popcorn, but only about half was eaten.  Tate and I also enjoyed our favorite drink:  Grape Fanta.  Sugary deliciousness.  

When we got home, he took a shower, and fell into bed. I snuggled with him until he fell asleep.  He told me it would take hours and hours, but it really only took him a few minutes.

And now it's my turn to pack.  We don't have to be at the hospital at an ungodly hour, and it's only about 20-30 minutes away, depending on traffic. 

Tate's Bone Graft Surgery (Alveolar Bone Graft)

When it came time to mentally and emotionally prepare for Tate's third cleft-related surgery, I was surprised to find that there's not a whole ton of blog posts by families who have been there, done that.

It could be that I wasn't looking in the right place.

It could be that people are too tired or too busy to blog about a surgery so long after the palate repair.

It could be that once our children start to become more and more their own people, it feels like more and more of an intrusion to share their stories. I know this is the thing that's kept me from blogging these past few years.

But knowledge is power, or so they say, and so I'm blogging the experience.

The Back Story
Tate is 9 years old and in third grade.  This is me with Tate on our date at Disneyland April 1:

At his last Cleft Clinic check-up, they told us to make an appointment within the year to see the orthodontist (the one who specializes in clefts and works closely with our Children's Hospital's craniofacial team). 

In early December 2018, we saw the orthodontist. He determined that it was time for Tate to have the alveolar bone graft because he has some teeth that want to erupt - but have no bone to erupt into. If they break through before there's bone, they'll just erupt into open space.  So he sent us off to the craniofacial surgical team for their evaluation.

When Tate smiles, you only see a typical-looking smile.  But it's pretty different than my mouth on the inside. This is what Tate's mouth looks like:

The Insurance
Side note here - we switched to an HMO for our insurance when I started a new job last year. We'd always had a PPO or some kind of hybrid before.  If our child needed to see an orthopedist because he grew too fast and couldn't touch his toes (or his knees!), we just did.  If Tate seemed like he was having a lot of breathing issues, we could just make the appointment with the ENT doctor. As long as the doctor was in the system, we could manage our healthcare and pay our copays.

But the HMO, which is the same exact system of doctors, was so.much.cheaper.  So we went for it.  And it turns out that now we don't get to manage anything.  To get the appointment with the orthodontist, we had to get a referral from Tate's pediatrician.  Same to see the plastic surgeon.  Then the insurance company had to preauthorize it.  Our pediatrician is very good about paperwork. But what a pain.

The Consult
Anyway, after seeing the orthodontist, we saw the plastic surgeon and his fellow.  The plastic surgeon who did Tate's cleft palate repair has handed off a lot of his surgical work to the "new guy," Dr. Samuel Lance.  At first, I was nervous about this.  Tate wanted to know if he could have Dr. Amanda Gossman, who he met at a summer camp she runs for kids for craniofacial issues. 

So I googled Dr. Lance. Then I clicked on everything I could find.  I'm not sure what - if anything - I could have done if I didn't approve.  But he seems to be top-notch.

Here's his picture, in case you're interested:

We met with him and one of his fellows.  They explained the surgery.  They recommended taking some bone and bone marrow from Tate's hip and putting it into the space in Tate's mouth where there is a gap.  (Just in time, Tate told them. Rice keeps getting stuck in fistula, and it's tiresome!)

In case you're wondering if there are other options, we were, too.  So we asked.  And they told us that they could use cadaver bone instead of Tate's bone and bone marrow, but the results aren't as consistently successful.  (We were really just wondering if some other bone could work - didn't mean to open a can of worms!) 

I asked what the mortality rate was for the surgery, which I think surprised them. They didn't know. And that's okay.  I tried to find the answer online, but I didn't really find anything. So it must be pretty low.  The surgery is pretty standard for kids with clefts, so it's not super risky.

The medical group billed us for this visit, even though it was pre-authorized. It was just a clerical error on their part.  But holy heck, are doctor's visits with specialists seriously expensive.  We were there for about 45 minutes, and the bill was over $500.  Having practice law at a couple of big firms, I know that's nothing in comparison - but I sure am glad for insurance. 

The Scheduling
Tate has a crazy school schedule, if you ask me.  His school is not year-round, but it is "extended." This means they start August 1 and then basically have a week off almost every month of the year.  They get two weeks for spring break, so we were hoping he could have surgery that first week and miss no school.  Of course we aren't that lucky.  But they had an opening for the week of spring break, so we took it.

More Insurance Woes 
Before surgery, we needed to visit the orthodontist again to have them create a mouth guard. The surgeon will use this during surgery, and then Tate will wear it after, to protect his mouth while he heals.  But before we headed back to the orthodontist, I wanted to make sure we were authorized.  I was able to confirm from our pediatrician/primary care office that we had authorization on the orthodontia. But the surgery was not authorized, and only the plastic surgery medical group could do that, we were told.

So I called them. They directed me to the surgery authorization department, which confirmed the request had been made December 17.  They couldn't tell me why, as of April 1, there was no authorization.  They said they would make it a high priority and told me to call back in a couple days.  Which I did.  That person told me there was no way someone told me two business days earlier that she could help me because I was talking with the outpatient department, and Tate's surgery is in-patient.  (Seriously, why would I make it up and give the person's name?) This person referred me to a supervisor and transferred me.  When the number transferred, the person said to leave a message and I'd get a return call.  I left the message.  No return call.

So by the time of the preop appointment, I was worried. What if we weren't authorized for the preop appointment? What if we didn't have authorization for the surgery?

The Preop Appointment
It turned out we did get authorization for the preop appointment. It came through 15 minutes before the appointment was scheduled to start.  Super helpful.  But still not surgery authorization.

In any event, we met with the surgical resident and then with Dr. Lance.  They explained, again, what to expect.  They told us they'd likely take bone from the hip opposite the cleft so different surgeons could be working simultaneously.  The procedure should last 2-3 hours. The hip is the most painful part of the recovery.  We gave them the health and nutrition form from school because Tate will be on a full liquid-only diet for at least four weeks.  And they sent us on our way.

The Cold
Of course, Tate came down with a cold.  Fortunately, it's been mild - no serious coughing, no fever. He stayed home from his day camp program one day so Grandma could help make sure he was "on the mend" (Tate's words). 

The Authorization
And we did finally get authorization for the surgery.  On Friday.  Three days before the surgery.  I don't get this at all.  Why wait so long?!? Anyway, at least that's all set.