A few weeks prior to our visit in Memphis we went to Arkansas Childrens Hospital for her Spasms and a Neurologist had advised us to start her on Sabril/Vigabitrin, a medication often used for spasms. After the second day of being on the medication Naomi lost most of her muscle tone, and didn't want to eat much at all. We cut the medication in half, but still didn't see much of a return in muscle tone. She started to eat better, but was choking a lot on her food. Also her spasms still had not improved much. We decided to get a second opinion.
We started Naomi's stay in Memphis on Oct.22nd. We were scheduled to stay for a three day EEG consultation with Dr. Kate Vanpopple, an Epileptologist. Naomi was taken completly off of Sabril, and Keppra after a few days of being in the hospital to see if that would help with her tone and eating. We had a swallow study while in the hospital, and she aspirated really bad and couldn't catch her breath and about five nursed rushed in the room. They had to suction her throat and nose and hooked her up to oxygen. It was so terrifying to be holding her and seeing her struggling to even get a breath, and not be able to help her. After the suctioning and oxygen, they did a chest x-ray to see if it was in her lungs, and it wasn't. They started her on breathing treatments, and left her on oxygen for a long time after that. After that they would not let her have anything else by mouth, they put in an NG(Nasogastric tube) down her nose so that she could get her Ketocal. They wanted to wait five more days till the Sabril was out of her system to see if her swallowing got any bettter. That was the hardest time for Naomi, because she loves to eat. She lets me know she is hungry by moving her tounge in and out, she also does it whenever you say the word food or eat. Also we had to eat in shifts out of the room so that she couldn't smell the food because she wants to eat when she smells any food.
The big day came for her second swallow study and her daddy, pawpaw, and bubba came back to Memphis. On all forms of liquid she aspirated, we watched on the screen. Our heart broke more and more each time. As she started trying the food she also kept aspirating some, until she got to the thickest form of baby food and she PASSED, it was the only thing she didn't aspirate. It was very heartbreaking for us to watch her struggling so much to eat. We then were advised by Speech therapists and doctors to have Naomi get a G-tube to get her main fluids. We were prepared for this, we thought, but you can never really prepare yourself to go through this. But we knew that we needed to what we thought was the best for Naomi, since it was not safe for her to continue aspirating, and we weren't sure when she would get her tone back. After much prayer and consideration we decided to have the G-tube done. We met a family while we were in the hospital that had a daughter who had her G-tube placement a year ago, and they told us there story about how they really fought with getting one. It was so great to be able to talk to a family that love the Lord and has gone through what we were going through. I really feel as though the Lord brought them into our lives. There daughter doesn't have CDKL5, but she does has CP, and seizures, so some similarities. And they allowed us to meet there daughter Nowell, and to see her G-tube and how they used it. It made everything a lot less scary. We also had someone from the Care team there make Noah a Monkey with a Mic-key button like Naomi will have, and also give him some books and coloring books about it. He really liked it, and listened, but didn't ask to many questions then, I think it was a lot for him.
We had Naomi's G-Tube surgery on Nov.5th. It went very quickly, and they said it went perfectly. After the surgery, we got to go into recovery and see how she was doing. Her vitals were great, but she didn't want to wake up, she opened her eyes a few times, but didn't wake up till later that night around 11pm. She woke up screaming, and they gave her Morphene, which made her try to rub her face of, and her spasms were so horrible she had so many, and didn't help her sleep at all, it was a rough night for our sweetheart. The next day we tried a Loritab and she finally got some rest and relief from her pain. Now we know that she doesn't do well with Morphene and won't ever give it to her again. Most of the day Tuesday she slept and cried everytime she woke up, because of pain. Wednesday her pain was so much better and she was starting to smile some again, brightening everyones day! Also the Drs talked about letting us go home that day, since she was doing so much better. She was still having spasms, but Dr.Vanpopple was hopeful that a seizure med called Topomax and the Ketogenic diet would help to stop her spasms.
We were released on Nov.7th, to go home after 17 days, and one day before Naomi's 1st birthday! We were so thankful that we got to be home for her birthday. She was so happy to be home!! She starting doing so much better when we got home. It has been a hard adjustment for us all, but mostly for our Naomi. Her G-tube is healing so great, it looks wonderful, and she is gaining weight! She is also still having spasms, and they seem to be getting worse. We are going back to Memphis this Thursday, because we have follow ups with Neurology, and with the g-tube clinic, to make sure she is healing good. We will most likely be starting Naomi on ACTH-Adrenocorticotropic Hormone ACTH is a hormone made by the pituitary gland. It stimulates the adrenal glands to make and release additional cortisol, which acts much like prednisone. ACTH has been proven to be slightly more effective than prednisone, but it must be given as an injection, once a day for the first several weeks, then every other day. ACTH stops seizures in more than half of children with infantile spasms. We will know on Friday after she has another EEG if she will start it. Most likely we will be admitted Friday to start, they are already making preparations.
We just want to thank you all for your love, support, and prayers for our sweetheart Naomi, and also our family. We just ask for prayers for Doug and Noah this week while my mom and I will be in Memphis. Noah is so strong, and such an amazing big brother, but he has a hard time being away from his momma. I know that he loves his sister very much, and prays for her all the time. It just breaks my heart when he asks me when will sister be able to walk. I tell him that the Lord has a plan for when she will, and we just need to ask him for healing. We continue to trust the Lord, and place Naomi in his hands. We know that he has the best plan for her. We treasure each smile and each time she has an accomplishment. Every day is so much more precious with her in our lives. She completes our family!