Grant's Surgery

We have been taking Grant to doctors since he was only a few months old trying to solve a mystery. When he was a baby he would always spit up through his nose. We did a swallow study, He drank a dye while being x-rayed. We did some genetics testing to determine if he had a certain disorder, but it came back normal. When he started on solid foods we only noticed the problem when he was sick and vomiting.

Grant also didn't pass the hearing screening when he was born. This led to tubes several times and numerous visits to the ENT for evaluations and testing. His ears seemed to be filled with fluid most of the time.

When he began to speak we noticed more problems. He couldn't form any hard consonant sounds. He started speech therapy and all the therapist we talked to seemed to agree that his speech was hyper-nasal. The airflow was escaping through his nose when he talked. They encouraged us to find out if this was a structural problem that needed to be solved first.

I couldn't help but think that two things were related - him spitting up through his nose as a baby and his speech being hyper-nasal. When I would talk to our ENT, he would brush it off and say it was fine. I finally ditched the ENT and found a new one. Our new ENT, Dr. Grimmer, was much better. On the first evaluation he thought that Grant's soft palate was short. He wanted to do a study that involved threading a camera through Grant's nose and watching him talk. The first attempt at this procedure was disastrous. Grant was screaming and they couldn't see anything. We decided to try again in six months and see if being older would help. The second time was much more successful. The doctors were able to see that his palate wasn't completely closing off the airway to his nose. He brought over a plastic surgeon and we scheduled a surgery to fix it.

This diagnosis solved the mysteries we have had since Grant was born. It was the reason he spit up through his nose as a baby. The reason there was always fluid in his ears, thus creating the hearing problems. The reason for the speech problems. It was such a relief to finally have some answers.

The technical name for the surgery is "Pharyngeal Flap Surgery." The plastic surgeon created a flap of skin at the back of his throat and connected it to his soft pallet. This develops a functional seal between the nasal cavity and the oral cavity.

The day of the surgery Grant was very scared. We had tried to talk to him about it, so that he was prepared, but this just left him very anxious. On the trip to Primary Children's Hospital he threw up. You can see in the picture that he was extremely tense and terrified. He was finally given some Versed that helped him really relax. I've never seen anything quiet so funny as Grant was on this drug. No more worries.

The surgery lasted about one and a half hours. During the surgery they had to put a stitch through his tongue. You can see the string taped to his cheek. They left this stitch in for a day. They had it there in case he started chocking on in tongue they could pull it out. This stitch was completely miserable for him. He wanted nothing more that to have that off. I don't blame him, that would be so annoying.

Right before we left the hospital Grant threw up on his frog blanket. In the confusion of leaving we accidently left his blanket. I am very sad to lose it. My mom made it for him when he was born. My only consolation is that it is now donated to the other little sick boys there. I hope it helps them feel better.

Grant was able to leave the hospital the next evening. Being at home was much better for Grant. Less strange noises and strange people. It was much harder for mom and dad to have him home. Coming home you also put on all your other hats. We weren't given a lot of instructions from the Doctor so we had to try and figure out things for ourselves.

It was has been a rough few weeks of recovery. Grant refused to take any medicine. We had to pin him down and force it in. We had a lot of medicine spit in our face or vomited up. The first three days he was getting medicine every few hours. Every six hours for the antibiotic and 4 hours for the Lortab. We would have to wake him up a couple of times a night to give him medicine. After three days we were able to just give him Ibuprofen which would last longer. I kept thinking that he would get better at taking his meds, but it didn't. It was a struggle up until the last time I gave him medicine which was yesterday.

It has been pretty hard for him to eat very much. He was always hunger, but couldn't eat anything. I imagine he has lost a lot of weight. There are still some things that he can't eat but it is getting a lot better.

Summary, it has been a long, painful, frustrating 2 1/2 weeks, but I think we all survived, barely. Grant hasn't had any medicine today and he is able to tilt his head back for the first time today. He goes back to the doctor on Tuesday.

UPDATE - On the way to the doctor Grant threw up in the car- again. I think it was even in the exact same spot on Foothills Drive as the first time. He was so nervous, even though I tried to tell him that all he had to do was open his mouth. Considering what happened to him the last time he went there, I can't really blame him. I didn't have any change of clothes in the car, so I had to stop at the gift shop at the hospital and buy a lovely $14 t-shirt that was way to big for him. At least it covered up the pants a little. After a bribe of a doughnut, he did a great job opening up his mouth for the doctor. The stitches are all dissolved and everything looks good. I am worried that he has sleep apnea now. Listening to him breath at night scares me. The doctor says that it could take 6-8 weeks for the swelling to go down. And up to six months for the really deep swelling to go down. After the 8 weeks, if his breathing isn't better than we will have to do some sleep studies to make sure that he is ok. We stopped at the cafeteria and bought the promised doughnut and he sang most of the way home. I then had a lovely time cleaning all the throw up out of the car. Yuck. He has lost so much weight. I weighed him today and he is at 29.3 pounds. I think he was around 38 before. For someone that was already small, losing that much weight is a lot. He can't keep his pants up now. I need to try and bulk him up somehow.