Mucocele

A couple of months ago I noticed that Nick had a large bump on his lip.

I wasn't sure if this was within the realm of a dentist or a doctor, so when Katheryn went for a dentist appointment, they looked at Nick's lip as well.

She said that it looked like it was a mucocele, and if it didn't get better she gave me a referral to a dental pathologist.

I had done my own internet/google search and that is what I had thought it was as well. It was not tender and didn't seem to bother him at all. So I waited another month, hoping it would go away, and then called for the referral.

We went to the dental pathologist last week. It measures at 10mmx10mmx5mm deep. And she recommended to remove it.

A mucocele develops after some type of damage to the salivary gland (either a bump on the lip from the outside, or biting from the inside). This caused the gland to rupture and a collection of fluid created the bubble. It could grow bigger if it is damaged again, it is unlikely to go away on its own. (from what the dentist said, because it went deep... even though Dr Google says it could go away on its own.. and it's been a couple of months with no change).

We talked about what would be involved in removing it. And decided on local freezing and nitrous gas. Nick didn't have any questions at all.

But when we got home he was very upset and said he didn't want to do it. The only thing that helped him calm down was a promise we would go to McDonalds before, and that I would be with him.

He was very good and quiet when we got to the dentist. But answered all the questions. We found out at the very last minute that I wouldn't be able to stay with him (I am not sure why I hadn't asked before). He started to get upset, but no tears, when the nitrous was on he was brave. When he took some big breathes and started closing his eyes (and had his Joker and Batman on his fingers) I left.
About 20 minutes later they called me back in.
Nick was good. No tears, they said he was their best patient of the day!

And they spoiled him with the treasure box of toys. I think he took 10 different things from the box home! They kept saying "you don't have that one..." and let him pick more toys.

Right now he has 3 small stitches in his inner lip. He's been having a bit of pain and taking Tylenol, and having soft foods for the night. But I sent him to school this morning

We go back in 2 weeks to confirm that it was a mucocele (they do a biopsy) and make sure it is healing.
They took out the one gland and a couple surrounding it (there are thousands in the mouth). And he will have a scar once it heals. I am hoping that it won't return, but it could.

Dentist in the OR

Nick's OR day came. For his dental work.

I wasn't sure how to label this for Nick. Is it surgery? Not really, but it is under general anesthesia, in the big operating room. Will we prep the same for surgery? Yes because it doesn't really matter to Nick what happens when he is asleep, he is still going to the OR.

I didn't prep him as much as I did in July. We talked about surgery and watched the Sick Kids video and compared it to his MACE surgery. But we also said that he would not be staying at the hospital, when he wakes up we will go home and he will feel better that night.

We kept him well, and surprising no cough or sickness so far in the new year. We had a plan for Katheryn and ready for us. We knew there was going to be some snow, but I thought it was going to start in the late morning.

Our OR time was 8am, and we needed to be there for 6am.

The morning of surgery we were right smack-dab in the middle of a snow storm. And we weren't sure if Katheryn's bus would be cancelled (it was). So we quickly changed plans and my dad drove down to Sick Kids with  me. 3 hours later we finally arrived (safely).

Everyone was late. They rushed through all of the assessment, with everyone coming to us. And we were still in the OR almost on time. Nick didn't get his time to play on the computer.

The nurse who was admitting us questioned the fact that Nick is on latex precautions. Saying that it is unnecessary because hospitals have removed latex.

Without being rude I still tried to say how that was false. Spina bifida is still associated with latex allergies even with latex removed from invasive surgeries and early care (i.e. catheters). Kids and adults with spina bifida still develop latex allergies, so we use latex precautions.

• Newborns who need invasive surgery (i.e. Congenital Heart Disease) were often exposed to invasive latex, latex gloves in surgery, very early in their lives and developed latex allergies. When this was discovered they removed latex from surgeries and the latex allergies decreased.... except for spina bifida.

They let me go into the operating room with Nick again this time (all dressed up in white overalls). He was a little bit more nervous this time, but did well. And when he was asleep I went back and waited.

About 2 hours later they were done. They did the x-rays, filled 3 teeth and shaved the sides of 3 of the teeth (eew) that had become too mineralized. They did a full cleaning and made some more space in the front of his teeth so that  there is less space for cavities.

He didn't wake up from the anesthetic very well. A lot of crying and "I want mommy" I wanted to climb onto the stretcher with him. He drank a little and then we were able to leave. Nick wasn't happy that we had to leave and he never got to play on the computer in the waiting room.

We did make a quick stop at the gift shop. Nick picked out a stethoscope, and I got Katheryn and me matching surgical caps.

Nick slept for most of the day once we got home. But no pain side effects from the anesthesia.

While this 'surgery' happened just like planned. I really hope that we won't end up in the OR for more dentistry work. While the gag reflex will still be there (which is what prevented doing this dental work without anesthesia), hopefully we won't get more cavities. We've stopped the oral ditropan and continue with tooth-brushing, even with gagging. But we have another 6 more months before we see our local dentist again.

Dentist

Nick finally had his Dentist consultation at Sick Kids. After our appointment in July, I waited until Nick was all recovered from the MACE before making another appointment to try again. The next appointment we could get was October 1st. 

A week or so before the appointment the dentist clinic called me and said that because of what happened before, they wanted him to be seen at Sick Kids. They had put in the referral in July, hadn't I heard? A couple of weeks of back and forth and eventually a letter came in the mail. We had our initial consultation. November 13, Nick's birthday.

So after a morning in school, Nick and I headed downtown to see the dentist. The destination wasn't the most birthday-friendly, but the trip was. Nick really likes riding the train

The dentist appointment was pretty basic. Nick was fantastic, not afraid, very calm and cooperating through the entire thing. We talked about our experiences with the dentist, our last 3 appointments to fix teeth with nitrous and sedation. We also talked about how Nick did not tolerate the visit the last time.  

Nick let them look in his mouth and we looked at his old x-rays. They printed the pictures, which Nick thought was great!

The dentist resident thought that we could fix the last 2 teeth with the least amount of intervention. A deep cavity maybe needing a root canal on the back molar tooth, and another one at the front. The dentist came and agreed, but wanted some recent x-rays to make sure we knew exactly what was going on in his mouth.

Nick decided to play a bit while we were waiting.
Pretending to spit in the bowl (he thought a spit-bowl was the funniest thing)

And he wanted to know what all of these things were, and what they were used for, and could he play with them. They found out that it was Nick's birthday, and gave him a lego box and some birthday stickers.

When it was time to get the x-rays done, that is when things started going downhill. He was good with the lead cover. But they couldn't get the x-ray tabs in. He just kept gagging and gagging (which is the chiari symptom). He did this before, but I was hoping it would get better as he gets older (we got the x-rays before with nitrous oxide, which decreases the gag reflex).

Even with the gagging, he was still good, and he let them try. With the gagging and the tears rolling down his face, he still let them try.
But we couldn't get the x-rays. So that changed our plan.

General Anesthesia. We have a 'surgery' date of February 2nd, first thing in the morning (the benefit of latex precautions). They have a 2 hour OR time booked, for x-rays, fill/fix whatever is needed for the teeth and a cleaning. He will then wake up from anesthesia and we can all go home.

I have had a number of people ask if we should be going to this extent for some baby teeth? Well the big one that needs to be repaired is on his big molar in the back. They think that this one is deep, and he will have these teeth for another 6 years or so.

We have tried just local freezing, nitrous and sedation and anesthesia is the final step. I knew it was on the table in May, and we tried all that we could to prevent it. Unfortunately we couldn't prevent it.

Once we get Nick's teeth all fixed up, we want to do our best to prevent him from needing it again. I also got a stern lecture about brushing Nick's teeth twice a day, including getting in the back. Even with the gagging that happens when I try to get to the back of his mouth.

I am really hoping that the oral ditropan is what caused the mouthful of cavities. I don't want every visit to the dentist end up in the operating room!

The Dentist

Nick has been going to the dentist to get 9 cavities filled.

9 cavities!

I have since found out that the Ditropan was probably to blame for the cavities. The sugary oral liquid given three times a day for years, on top of the fact that the same medical gives a dry mouth that can impact cavities as well... And the sensitive gag reflex that prevents us from getting at the back without a fight.

I wish I had know this before and been more prepared for the cavity consequences.

We were referred to a specialized Kids Dentistry clinic and came up with a plan.

We had a couple of different choices to get them fixed.

1. Using General Anesthesia, they offered in the clinic (not even considered) or the hospital. It means that they can fix all the teeth at the same time, but it also means general anesthesia

2. Using freezing, nitrous and/or an oral medication to make him sleepy. It means that he will be awake (but sleepy), but they can't do it all in one sitting.

We decided on option #2, all of three of the choices. We talked about all of the different things they do to help to calm Nick if he gets upset and make it a non-negative experience.

The first appointment didn't go entirely as planned. Nick was scared, I hadn't been 100% sure of what to expect. We stopped when he started to get upset and crying when they had done 3 teeth on the bottom.

He didn't like the feel of the rubber (latex free) dam they put in his mouth. I know from experience it feels suffocating, especially for a kid. And the pressure is uncomfortable.

I had looked at Sick Kids referral to see if we should go there. But after talking with Nick I thought that we still might have a chance to avoid general anesthesia. So I didn't follow through with getting a referral.

For the next appointment we practiced calming. And breathing through our noses (and inhaling the nitrous oxide) when Nick got scared. We were much more prepared. 

So the next time we went, we did top and bottom on the opposite side and Nick did great. I was so happy.

We only had one appointment left, with 2 teeth and then we were done with the dentist for a while.

That was the plan.

It didn't go as planned.

Nick got very stubborn and wouldn't let them doing anything.

He refused to let them take his blood pressure, or drink his sleepy medicine. I ended up syringing it into his mouth, and after an hour he was sleepy.

Then he got upset about everything. The freezing made him cry. Even with more freezing. He got upset with everything they tried to put in his mouth. Crying big tears that rolled down his face and into his ears. He would fall asleep when they stopped. But start up again if we tried again.
We tried everything to calm him down. But he just kept crying and saying no.
We tried about 4 times before giving up and leaving without doing anything. (Except drug him up). The dentist was great and very patient with him.

I'm not sure what we are going to do next. The 2 teeth we left for last are the ones that need to most work (potential root canal for a front tooth and cap for a back tooth). I know it is just baby teeth, and they will fall out anyways. They still lay the ground work for adult teeth.
But if we start talking about pulling or that they are just baby teeth, I imagine what Nick's smile would look like for 3 years without a front tooth and I want to cry.

It would have been nice to be able to have identified the need for general anesthesia (which he is getting for his surgery anyways) and be able to do everything at the same time. But it is too late for that now.

I am really hoping that with all of the concentration we have put on his surgery that I might have sprung this dentist visit on him and that is what caused him to be so upset and scared.
I'm hoping his teeth will be ok while we wait to figure out what to do.