Well, Jake had his tongue reduction using radio frequency yesterday morning. We are home now. I won't be able to write a lot now because it is late and Jake is awake (his sleeping schedule is thrown off). First I need to say that we won't see results until 3 to 6 weeks when the tissue turns into scar tissue which shrinks the tongue. I had said before that the body reabsorbs the tissue but I guess it doesn't, the scar tissue stays there but just shrinks. 
   With that said, if this works this is definitely the way to go. We took notes and will write a detailed letter tomorrow. The doctor also took pictures of Jake throughout this so if someone else does it you will know what to expect. 
    I'm not saying it was easy, but a lot of that had to do with not knowing what to expect since Jake was the first baby they did this to and the first patient they used the RF on more than the base of the tongue. But, overall here is the scoop.
   It took 45 minutes to do. They did 15 spots on the tongue. They inserted a needle into the tongue and zapped it for a few seconds in each spot. They did the base of the tongue, the middle, and the outside edge (like a U). I don't believe Jake was ever really in pain. In fact, the only medicine they prescribed for him was tylenol with codeine. The problem was that his tongue swelled up like crazy. I'm not talking about double the size I'm talking way more than that. We couldn't even fit a popsicle into his mouth because there was not room. Since he couldn't take oral medicine they gave him morphine which helped him sleep through a lot of this. When he first woke up he started dancing to the background music in the PICU.  Hee Hee. He felt his tongue with his hands, read a few books and went back to sleep. The rest of the time he woke up he was grumpy I believe because he was tired and frustrated. They said the tongue could take 48 hours to hit the swollen peak. I was not looking forward to that. In fact my first response was to cry when I saw him and instant guilt set in. Did we make the right decision for him?

24 hours after the surgery his tongue was about twice his regular size or so. Within a couple of hours it was barely swollen at all. 25 hours post-op he drank 5 ounces of juice from his bottle with no discomfort at all, then fell asleep. He wanted to eat his regular schedule of food, but we didn't want to push him. Today he drank from his bottle and sippy cup (milk and juice). He ate rice cereal, jello, cheerios (he even mashed them with his tongue), spaghetti and meatballs, didn't like his veggies (I guess his taste buds are fine-ha ha), and yogurt. I believe he could have eaten whatever he wanted. I was shocked he wasn't it pain. Once the swelling went down, we gave him tylenol once (just in case) and he hasn't been on anything since noon. Wow!!! He is in good spirits, just tired.  (we had to wake him up 
yesterday at 5:30 a.m. to go to the hospital). 

Time to go to bed.  Pray it works.  Details tomorrow.

*****
We woke Jake up at 5:30a.m. to get him to the hospital at 6:30.  They did the pre-op assessment and they took him back to surgery at 7:30. They put him under and intubated him. We had decided with the Ear, Nose and Throat (ENT) surgeon to perform as many things as possible at one time since he was sedated anyway. They clipped the skin in between the top two middle teeth (Frenectomy) since his was enlarged (not due to BWS) and then they started the tongue surgery. The surgeon had said the surgery would take one hour and Jake was done by 8:30. They inserted a needle into the tongue and zapped it with radio frequency (RF) energy for a few seconds. The doctor said all went well and that they did 15 spots on his tongue. They did 3 spots across the base of the tongue, some down the middle and some around the edge of the tongue. They had explained that they would stay away from nerves and taste buds. They gave Jake steroids and a Tylenol suppository before the procedure to help with postoperative swelling and pain. They weren't sure how much swelling there would be but didn't expect much pain based on similar procedures performed on adults. The doctor did mention that Jake didn't have the line down the middle of his tongue. I didn't even realize I had one or that Jake didn't. Does anyone else notice this on people with BWS? 

After the surgery they took Jake directly to get a CT scan to make sure his tumor wasn't reappearing (it looked good), so it took us longer than normal to get to the PICU. When we saw him before he went into the PICU his tongue was a little swollen but not too bad. When we got to go into the PICU after they extubated him we were shocked how much his tongue had swollen. It was HUGE. I thought we had made a mistake getting this type of surgery, but the nurses assured us that the tongue swells as much with the traditional cutting of the tongue. They put a nasal trumpet in one nostril (it is a tube that goes through the nose into the back of the throat) to keep an open airway in case the swelling covered the back of the throat. I was surprised he didn't seem annoyed by this. They ended up giving him almost 1mg of morphine at 10:30 because they realized that he wouldn't be able to swallow his Tylenol with codeine. This time period was the biggest enlargement of the tongue, and it continued to grow. Within a short time about 2/3 of his tongue was sticking out of his mouth and his cheeks were bulging from his tongue pushing against them. At 11:00am he woke up and started dancing to the background music in the PICU. I knew then that we made the right choice and that he would be fine. We read some books, played with a few toys, he began to touch his tongue and then went back to sleep. We tried to let him sleep most of the first 24 post-op hours. He didn't act like he was ever in pain but was definitely annoyed by not having full range of motion with his tongue. He could make noises but didn't feel up to it. We started out with morphine every 4 hours and went to every 6 hours until 23 hours post-op. He may not have needed it for pain but we didn't want to take the chance of him being any more uncomfortable than he needed to be and we all felt that sleep and comfort was the most important thing for him at this stage. 

Because there was only a small space between his tongue and the roof of his mouth we tried giving him popsicles. He enjoyed them and even tried to suck on as much as he could get in his mouth. He didn't seem like it hurt, but got frustrated whenever he swallowed, the juice would go down his throat, back up the nasal trumpet and out his nose. We suctioned it out, which I think is when he got the most angry. He actually scraped his tongue with his teeth the first time the nurse suctioned and there was a little blood. Before that there was only 2 drops of blood that I saw and that was at two of the puncture spots where the tongue was just so stretched out from the swelling. Bleeding was never a problem. We rubbed a popsicle all over the parts of the tongue we could reach. I think it felt good for him and we thought maybe it would help reduce the swelling. This was also a way to judge whether or not the tongue was shrinking. We would slowly be able to get each popsicle further in his mouth. He was drooling a lot at the beginning but then it stopped. His tongue would start to dry out so we put Vaseline on the parts we could get to while he was sleeping. He didn't mind it too much. At 11:00p.m we started to notice that the swelling was decreasing a little bit. Throughout the night we just tried to let him sleep (on our chest of course since there was no way he was going to sleep in the crib) with his head up to help the swelling go down. 

Day 2
24 hours post-op (around 8am) we thought the swelling had gone down but weren't sure how much. Luckily the surgeon had taken pictures with his digital camera and showed us the ones from about 5:30pm the night before when the tongue was at its largest. Then we realized it had shrunk dramatically. A couple of hours later (10:00 am) the tongue was barely swollen. Jake managed to rip out his nasal trumpet at 7:30 am because I guess he knew he didn't need it anymore. At 8:40 am (25 hours post-op) he drank 5oz. of juice out of a bottle with no problem. At 10:15 am he drank 8oz. of milk and he continued to want to eat and drink.  Our nurse said the steroids might increase his appetite (he got a total of 4 doses of steroids, 10mg per dose). Later that day he ate cheerios, yogurt, Jell-O, and spaghetti with meatballs. He drank out of a bottle and a sippy cup with no problem. We stopped the morphine at 6:00 am and gave him one dose of Tylenol at 12:30 pm just in case. We didn't give him any medication after that. 

I would say Jake was definitely ready to go home by 30 hours post-op. He was laughing and playing by the time we left and never had any feeding problems. Now his tongue looks just like it did before he went into the hospital. We will know how things turn out in 3-6 weeks after the scar tissue forms.

A few suggestions if someone decides to do this:

1.  Ask for a bed vs a crib so you can sleep with your child.
2.  Radio with music from home and a t.v helped
3.  There was lots of slobber so bring extra shirts. I wore a top shirt when I  
     held him so I could just take it off if I had to leave the room. 
4.  Having both parents there was great so one could go get food or  
     take breaks and Jake was always held.
5.  Use Vaseline to keep the tongue moist.
6.  We made a larger hole in the nipple just in case he had a hard time  
     sucking but I don't think he needed it. 
7.  We brought his favorite juice and food from home. Popsicles
     were a lifesaver.
8.  Take either Polaroid or digital pictures so you can look back and
     compare the swelling to know if you hit the peak yet. It might
     help with your peace of mind.

If this surgery does in fact reduce the tongue and there are no complications, we highly recommend this procedure. There was virtually no bleeding and he was eating within 6 1/2 hours. He doesn't have any stitches and was back to his normal self in a day and a half. 

If you have any questions please e-mail me.

Stephanie