We woke up and arrived to OK Diagnostic Imaging around 6:45. Filled out paperwork and waited. They took Michael and I into a smaller, more private waiting room off the main waiting room and a nurse came to explain what all would be happening. Dr. Coleman ordered her MRI to be with or without contrast. This means, they'll take the images in standard gray, without contrast. If the MRI doctor needed to see her brain in more detail he would have the anethetist insert an IV to do the dye/contrast which would add color to the images. The nurse also explained that the anesthesia would be given in gas-form similar to how it is given at a dentist... she'll breathe it in and go to sleep. Then the anesthetist came back and took Rayleigh and asked us to wait in the room.
Michael and I tried to keep ourselves busy in the waiting room by talking, reading magazines and playing on our phones (haha) but nothing could keep us from realizing how close Rayleigh was (2 rooms down) but how we could not be with her. Every time someone would walk down the hallway we would both stop whatever we were doing to look and see if it was our bug.
Finally, the anesthetist comes into our room and tells us that the MRI is over and that Rayleigh did great and that he did not have to insert the IV for contrast because the MRI doctor got exactly what he needed without it. He told us that Rayleigh would be awake shortly and the nurse would be bringing her in to us. We were so relieved to hear that there were no complications and that Bug didn't need the IV... poor thing has been pricked enough with needles!
He brought Rayleigh in and handed her to me and said that she was still pretty much asleep and would be waking up soon. He said I could use the curtained off section of the room to feed her when she woke. The nurse explained that she would probably be pretty groggy throughout the entire day. Michael and I were very happy that we got to have Rayleigh with us before she woke up so that she didn't have to wake up in a strange room filled with strangers. She woke up about 2 minutes later and I took her back and fed her and we gave her her Keppra. She stayed awake only long enough to eat, take her medicine and get buckled in her seat and snapped into the car. Then she was back asleep. We figured she would be, she still smelled of anesthesia!
That day she had 2 seizures. Remember in the last post that she had gone an entire week seizure-free thanks to the Phenobarbital! Tuesday she had 1, Wednesday she had 2, Thursday she had 1 and Friday she had 1. Monday, Tuesday and Wednesday she had a seizure around 10:30p Thursday and Friday's were around 6:30a.
On Friday morning, July 30, we had an appt with Dr. Coleman, her pediatric neurologist. We were anxious to hear the results of the MRI. Michael and I figured the not-needing-contrast meant 1 of 2 things: her brain is so perfect that there isn't even the slightest issue OR the issue was so evident that they didn't need to see it in contrast. We came to the appt with a LIST of questions for Dr. Coleman. Most of the questions were from Michael and I, just general concerns and new developments but a few were from Michael's dad. George had had seizures caused from a concussion so he knows what Rayleigh is going through on a certain level that none of us can relate to. His seizures are controlled by an anti-convulsant that he takes daily and has been doing so for years. He said he remembers that after a seizure he would feel like he had just been hit by a car so he wanted us to ask Dr. Coleman if she was hurting afterward. So he wanted us to ask that along with a couple other questions.
Thankfully, Dr. Coleman did not keep us in suspense. He immediately told us the results of the MRI. NORMAL, CLEAN, PERFECT! YAY!! We were thrilled. Then we talked possibilities. He told us that given all her tests being normal and that she went a week seizure free while on Phenobarb that she could have Benign Infant Epilepsy. He said that there is just over a 50% chance that this is what we're dealing with. Benign Infant Seizures go away on their own between 4-6 months! There are several forms of benign seizures, he said that there is about a 70-80% chance that she has some form of benign seizures, but he is weighing heavily on Benign Infant Seizures. Benign seizures, which are grown out of, is obviously what we are now hoping and praying this is. But only time can tell. There is no test that can be done to find out what kind of epilepsy.
Dr. Coleman wants us to wean her off the Keppra, so starting that night we were to cut her dose in half. For 5 days she was to have .8ml twice daily and then the next 5 days would be .8ml at night and then no more Keppra, just Phenobarb. Today was her last day of taking Keppra in the morning so now 5 days of only taking Keppra at night with Phenobarb and then we will no longer have to give her the additional medicine. We also upped her dose of Phenobarbital to 8ml from 7ml nightly.
Dr. Coleman said that it was a combination of Rayleigh gaining weight and having anesthesia that caused the breakthrough seizures. He suggested having her blood checked regularly to insure we have the proper levels of Phenobarb for her weight so that we can prevent breakthroughs in the future.
Now we are caught up on the blogging!! And I am proud to say that Rayleigh has gone 3 full days and counting since her last seizure :)
No comments:
Post a Comment