No More Reglan

After Hayden continued to vomit and had several focal seizures over the weekend, we discontinued giving Hayden the Reglan until we could talk to his doctors. Every child in Ankeny must have been sick on Monday. I tried calling the pediatrician's (Dr. Schutte)office all morning, but the lines were busy. So, I called the gastroenteroligist's (Dr. DiMeo) office instead. I talked to his nurse and she said that it sounds like he was having seizures but wanted to talk to his neurologist (Dr. Palat) who is in the same office. Dr. Palat's nurse called back and said to increase his Phenobarbital (anti-seizure medicine) to 1 tablet 2 times a day instead of 1.5 tablets daily. The seizures may have been caused by the Reglan, but since Hayden has gained some weight, she wants to make sure that he maintains enough of the drug in his system. She also placed an order for Diastat (emergency seizure med) incase he were to have a tonic-clonic seizure lasting over 5 minutes. I read the instructions on how to administer it today, but am praying no one will ever have to use it. We were also instructed to take him to the ER if he has anymore uncontrolled jerking movements.

On Thursday, Hayden had his 3rd swallow study. His speech therapist, Leah, was there with us. It was great to see her again. It seems like her maternity leave took forever. We had a great fill-in while she was gone. However, Leah gave both boys their very first bottles. Anyone that worked with our boys in the NICU has a very special place in our hearts. We are glad that she is still able to follow Hayden. The swallow study turned out just like the others...fine with no signs of aspiration. Thank goodness. Aspiration scares me. We have a follow up appt to discuss what the next step is with the GI doc on Wednesday, Feb. 4th. We are fully expecting him to tell us that he wants to do the scope. This means the feeding (G) tube will go in at the same time. He has already told us that a scope has to be done with a G tube and he will not scope him twice. We are wondering if he will mention doing a fundopication (wrapping part of the stomach around the esophagus so one can no longer vomit). We are against this at this point. Can you imagine going through life not being able to vomit? How many times have you just wished you could vomit when you are sick so you will feel better? There would have to be some really, really good reason for us to agree to that.

Monday is our second visit to Gillette Children's Hospital in St. Paul, MN to see Hayden's physiatrist (rehabilitation doctor), Dr. Deshpande. Not sure what to expect. We'll show her the AFOs (ankle-foot braces) and thumb splint that she ordered when we were there in October. The next post probably won't be until next weekend when we can update on everything.