Swallow Study and Surgery

Azer had fun with trick shots yesterday.

So the swallow study results came back. It showed that he isn't aspirating when he swallows, but an ENT doctor will be doing a temporary repair on it during the same surgery as the Nissen. If Azer starts to go downhill again, the ENT doctor can perform a more permanent repair. 

Azer was put NPO last night tentatively for surgery today. It looks like it will happen for sure very soon this morning. 

Met With Surgeon

Today we met with the surgeon regarding Azer's reflux surgery, called a Nissen Fundoplication. Since medication has failed to control his reflux and aspiration, surgery is the only other option. The surgeon answered a lot of the questions we had about the operation, recovery and life after.  He said he will be doing a bronchoscopy at the time of the surgery to check for any rare birth defects in the esophagus. Apparently, there are two rare defects can happen, one around the voice box area, and another between the bronchial tubes and the esophagus, that could allow reflux to enter the lungs. There is a possibility of Azer getting a new G-tube stoma if the surgeon has a hard time operating through the existing hole. Azer may have a hard time eating and drinking for a few weeks after the surgery, but he will be able to get plenty of nourishment through his G-tube while he is recovering. He might have to be admitted before the surgery if the CF team feels like he needs IV antibiotics for his lungs. 

It's been just over a week since Azer got off IV antibiotics. He already has been coughing up darker mucus, has been experiencing fatigue and chills. He messaged the clinic who wants to start him on inhaled antibiotics to hold him over until the surgery. They said if the antibiotic are helping him feel better, he can stop taking the antifungal, since it's obvious that it isn't helping his lungs at this point. 

Unpleasant Surprise

Well tonight Azer's main GI doctor called saying that she reviewed the results of his impedance test. She said 50 or under events of reflux is normal. Azer had over 90. A large percentage of those events were when he was refluxing all the way up his esophagus, meaning he is very likely to be unknowingly aspirating. She believes the next step is a Nissen surgery. She is setting up an appointment for him to meet with a surgeon that is familiar working with CF patients. 

Admitted Again

About two weeks ago, it seemed like Azer was going down hill again, the same way as has been happening all this year. He began becoming very fatigued in the morning to early afternoon, very cold, and increasingly congested. Saturday, he had a fever, and his lungs felt very full. His heart rate was high, and oxygen was low. The on call doctor said if the fever got worse to go to the ER, but he was stable through the weekend. This morning, his lungs felt so full, he could barely speak without a coughing attack. He has been coughing up a lot of mucus. It is extremely frustrating to feel like he is back in the same place as a month ago, with no answers at all. His cultures from his sinus surgery and bronchoscopy still don't show any slow growing bacteria or fungus. It was always that the bronch would be the final try to see what was really going on, and we feel stuck now. We are all hoping for relief for him and some insight. 

Doc Visit after a cold

We went to the pediatrician last week to do the evil deeds to my children - vaccinations. Azer seems to have more fear of the shots. I think its from getting IV's. Anyway, both of them ended up picking up colds that day. Reema had sniffles for one day. But Azer had really bad sniffles for about 3 days and then he ended up getting a wet cough. So, he's on antibiotics now.

For the first time, he actually shook hands with the doctor and even waved bye-bye. He's never done that to a person in a white coat before. I guess he's got to become friends with them sometime!

And guess what else ... I've been so busy I didn't have time to post this. We had a swallow study done about two weeks ago, and they found he was aspirating liquids, so now they want us to make all his liquids thick. The speech therapist gave me a can of some stuff called Thicken-up ... so GROSS! I mixed it up with water and it turned into a lumpy glass of cream of wheat... yuckiness. Poor Azer already has issues with textured things, and now all his liquid was textured? He wasn't going to go along with it so we ordered some other brand of thick stuff. It doesn't make it lumpy ... but now his liquids are like jello. I think it still looks pretty gross. I can't believe we didn't know this before.

despite all of this, he's a pretty happy little guy.

***This is a fair warning. The following is a very disgusting story of what happened to me a couple days ago. Do not read if you are easily grossed out.***

This is what happens when a child with CF wearing a diaper does not absorb fat.

We were about ready to leave the Children's Hospital. Azer was apparently having a BM. So, I pick him off of the stroller to change his diaper. I notice there is BM on the seat of the stroller. And I do not mean a smudge. I mean ... like a handful. I carry him down the hallway holding him as far from my body as possible, pleading with someone to help me. If there is anyone reading this that was there that day, I apologize for you having seen that much poop stuck to the back of a child. A very very nice nurse assistant opened up an examining room for me. I will spare you the details, but it took a full container of baby wipes to clean the BM that had worked its way up Azer's back and down his legs. The nice nurse assistant came back with a gown for him to wear since his clothes were way beyond cleaning. She looked happy ... perhaps happy that she wasn't the one in this situation. I cleaned the stroller has best I could, but Azer had to walk until we got to the car. May God bless that nurse assistant.