It seems that something very bad happened in December, either it was because he developed infantile spasms, or because of the new medication to treat the spasms, or maybe just a change in how his brain works. We will never know what happened, but Braxton regressed. All the hard work we had done to teach him to eat was gone. He choked on his feedings, especially his bottles. It became harder and harder to get milk into him. I was pace feeding him, because if he had more than two ounces, or 20 minutes nursing, he would throw it all up. Some days as hard as I tried he would throw up five or six times. Smaller quantities meant more frequent feeding, until we were on newborn schedule, up every 2-3 hours to feed night and day.
When we brought him to the hospital his reflux was so bad he was choking or throwing up on just the milliliters of liquid we were trying to syringe into his mouth. He had gone so long without a meal I tried to nurse him in emergency, and that will probably be the last nurse he will ever get. He has now had a test that reveals he is aspirating on even his own saliva, and most likely would aspirate any milk he drinks. He isn't coughing to protect his airway as often as he should. His swallowing/breathing muscles might be floppy, just as the rest of his body has become very low tone and extra floppy. Are these changes a result of his spasms or a side effect of a medication, we don't know.
We did suspect that his thick, never ending, saliva was a reaction to one of his medications, Nitrazepam. We convinced the pharmacist to look into it, and we were right "excessive salvation" is listed as a side effect. Since being in the hospital Braxton was suctioned in the mouth and though the nose multiple times a day. He would take nitrazepam at eight pm, it sedated him for a few hours then he would wake up full of saliva, unable to breath, oxygen levels would plummet, and he would have to be suctioned. For hours he would cry, choke, and need suctioning. We talked neuro into reducing the dose, and he is now weaned off of it. He can actually sleep at night without the choking/crying fits!
He needs a g tube put in so that he can get his nourishment directly to his stomach. The big question right now is whether he also needs a fundo, an invasive stomach twist surgery, to prevent food from travelling up from the stomach and down into the lungs. We need the 'smart' test to help us decide if we need the fundo. The g tube surgery could be done soon with a shorter recovery, but the fundo (stomach twist) and g tube together would be Feb 14 with a longer recovery in ICU.
We have connected to different supports here in the hospital. Child Life has brought Brax some stimulus toys and a floor mat for tummy time. He is also geting music therapy while here in hospital. The palliative care team is helping to advise us on decisions and can provide a transition from hospital to home in the hospice. Our social worker is amazing at navigating and coordinating the many doctors, forms, and administrative junk that we have to deal with. We have also been transferred to a new pediatric team at the hospital that isn't a teaching group and focuses on long term stays, which helps to provide continuity of daily care.
We are also going to be starting Braxton on a Ketogenic diet. The diet would be a special formula that's a ratio of approximately 4:1, four grams fat to one gram carb+protein. The idea is to get him burning fats rather than sugar in his body, which can change how his brain functions. It needs a ton of monitoring, bloodwork and pee samples multiple times a day as they adjust the ratios (by adding apple juice to formula), and weekly weigh ins. We would also be giving Braxton vitamin supplements, but we can wean him off all of his seizure medications. The diet is started in hospital over five days, and could start as early as Tuesday next week. It is still under research, but most little kids who don't respond to medications, have a significant decrease in seizures on the diet.