As days past after Nathan’s 1st surgery which was on Jan 21, he hasn’t been quite himself. I thought he was but he was very tired, gloomy and not as active as before. Yesterday while I was feeding him lunch, I thought I was looking at his tongue when he opened. When I looked into his mouth more carefully, the front of his palate was opened! So it was his open palate that I was looking at! Since his palate was opened, it looks like he has two tongues inside his mouth! This reminded me of the creature in Aliens where the alien had another mouth in its mouth.
I told my husband who was at work at the time about it. I told him that his palate definitely doesn’t look right. I asked my husband to call the doctor to set up an appt much earlier than his follow-up appt on Feb 1. After 15 mins later, my husband told me that the nurse at UCSF asked to take pictures of Nathan’s open palate. It took me a while to take the pictures because of course Nathan was not in the mood to have me keep his mouth open. After several tries, I finally sent some pictures to my husband. Once the doctor saw the pictures, they set up an appt for Jan 27. Well actually set up another surgery procedure.
My husband and I were upset because our son had to go to another surgery. We wished that his palate was fixed properly in the first surgery. But at same time, we knew that Nathan needed this surgery.
In doctor’s office, he looked at it again. We also told the doctor about Nathan’s bad breath which he had since after the first surgery. The doctor told us that his open palate appears to have some yeast or bacteria growing on it which is the cause of the bad breath. Our son’s breath smelled so bad. It was hard for me to kiss him at times! 🙁
Once we saw the doctor, the nurse told us that the surgery team is finishing up another surgery and will perform my son’s surgery afterwards. We were at the doctor’s office 10am in the morning. At UCSF hospital, we checked in again with the receptionist. After the paperwork, we went up to the 4th floor where the Pediatric surgery room is located.
Nathan was back in the surgery waiting area! We can tell that he remembers this place because he kept crying and didn’t want any nurse to even carry him. In his first surgery visit, he was all smiles and didn’t mind being carried by doctors or nurses because of course he didn’t know he was going to have surgery. Now that he is back for second surgery in less than a week, he remembers what happened.
Nathan unhappy at the surgery waiting room
We tried to keep him calm but only worked for short time
As in Nathan’s first surgery, the surgical team talked to us about what they plan to do. They said that they will clean out the bacteria and will restitch his palate. The surgery will be 1 hr.
When it was time for Nathan’s surgery, the nurse put her arms out to Nathan and Nathan didn’t want to be carried by her. When the nurse took him, he was crying all the way to the surgery room unlike last time. His surgery was around 12pm.
During surgery, my husband and I grabbed lunch then went to the waiting room on 1st floor. The receptionist called us around 1 – 1:30pm and told us we can go to the Pediatric recovering room which is same floor as surgery room.
Nathan had blood coming out of his mouth but not as much as from the first surgery. When the nurse felt he was in pain since he was crying, she gave him something to ease the pain. The nurse pulled out a rocking chair for me and carried Nathan to give him comfort. Since parking sucks at UCSF, my husband drove our SUV back to his parent’s house and had his dad drive him back to UCSF.
The doctor told us that they needed to remove two of Nathan’s teeth on the side of his mouth in order to restitch his palate properly. The doctor said that the teeth were growing crooked anyway which is common with kids born with cleft palate. So hopefully those teeth will grow straighter since his palate is fixed.
Good news was that once Nathan is able to drink liquids without problems, he can go home today. First few tries if giving him milk or juice didn’t go well. But after few hours, Nathan drank almost 10 oz of liquid. We were at the recovery room until close to 4pm. After Nathan was discharged, we went to Walgreens which is near UCSF hospital to pick up Nathan’s antibiotics to prevent any bacteria or yeast growing in his mouth. Waiting for his meds at Walgreens took as long as his surgery. The pharmacist didn’t quite understand what the doctor had prescribed for Nathan. So the pharmacist had to give the doctor’s office a call to confirm.
Since Nathan was given some pain-killer, he was drowsy and tired. He slept on my lap while waiting for his meds.
Pretty much we were at the UCSF from morning til 5pm. It was a very long day for us.