After his first surgery we saw some improvement. Within a couple months it seems like we were back to square one with the pain. He has always had some type of pain. After doing more research and more talking to friends who also have Chiari, we felt like it was time to move forward with finding a specialist. You know the saying "God puts people in your life for a certain reason?" I believe that is true. I crossed paths with two awesome women who are also Chiari fighters. If it wasn't for them, I don't know where I would be right now. They have kept me sane during this time and also put us on the right path to the amazing Dr. Frim. When I sent in Brennan's MRI CD's and reports to Dr. Frim, I felt a big weight come off my shoulders. I knew we did the right thing. We knew there was more to Brennan's journey. The mama instinct set in. You just know when something is not right with your child. . The day that I received the phone call from his office, it was a shock but at the same time it was those words I heard " Dr. Frim needs to see your son" that I felt Brennan was going to be in good hands.
Right before I sent in Brennan's images to Dr. Frim, he was diagnosed with EDS (Ehlers Danlos Syndrome). It took almost all summer to get this diagnoses. We lived at Cardinal Glennon all July. We were there twice a week for testing, doctor appointments and check ups. It is pretty bad when they know you by name there lol. When we got the news of this diagnosis, it did not surprise me. I knew deep in my heart he had it but I just didn't know what type he had. After this diagnosis, he started physical therapy, occupational therapy and continued on with speech. I do have to say he has some pretty awesome therapist at the hospital. They all have been a part of his journey and I can say he has come a long way especially his speech.
Our first visit with Dr. Frim, it confirmed what Chris and I knew... he was going to have to have a second surgery to correct his first surgery. Dr. Frim already had a game plan for his surgery. It was way more extensive than his first. When he did have his surgery in Nov, he was back there for a long time. When Dr. Frim came out to talk to us, he was sweating and you could tell he was concerned. Things were a little more complicated than what he was expecting. Hearing the words "blood transfusion" during surgery was not what i was wanting to hear but I guess they sugar coated it when they called and said they were "controlling the bleeding". The care he received at Comer's Children's Hospital was beyond amazing. Every nurse we had along with the neuro team were just awesome.
Right after Thanksgiving we were visiting Chris's mom and dad when Brennan got sick in the middle of the night and started having pain. It was scary because here we were 4 weeks post op and not sure what was going on. His temp had spiked up too. I took him to the doctor the following day were the doctor said he had a virus but he still had a lot of pain in his head. I called the neuro team up in Chicago and they said it could be just a virus nothing to do with his surgery. Dec 1, Brennan woke up screaming in pain again and temp spiked up. I knew something was wrong again... so we went to the ER. They did a CT scan which did not know anything at that time. They did the blood work and it came back his white blood count was so high they admitted him to find out what was going on. He still has having a lot of head pain and back pain that our pediatrician was going back and forth with what he could have. Around 4:30 Brennan had fallen asleep. I noticed at that time he was "shaking" and once I got up from the couch to see what was going on I knew this was not normal. My mom was with him and also saw him do this. I called for the nurse and within minutes our doctor was in there and Brennan was beginning to have seizures. This prompted them to tell us they were going to have to transport him to Cardinal Glennon. Hearing those words, everything was spinning around me. Luckily Chris was there just in time to hear what was going on since he had gone back to work and I had stayed with him until they discharged him.
One of my biggest fears had just come true.... having to transport my kid to a bigger hospital and not having a bag ready to go. I had just enough time to come back to the house and throw stuff in the bag and get back to the hospital to find the EMT's and ambulance ready to go. My world started to feel like it was crumbling around me. One of most scariest moments is seeing your child so sick. Once again, I had to say goodbye to my daughter and my other son again and tell them I love them both. Breaks my heart when i relive that moment. So many tears and so many emotions going on that day and night. Hearing my other son ask if his brother was going to die made it even worse. We reassured him that he was going to a bigger hospital to help make him better and that we would be back soon to be with him and his sister. Once we got to Cardinal Glennon they ended up doing more blood work and started him on an antibiotic. They did do an MRI on his head come to find out he has what is called a pseudomeningocle, a small leak that is collecting at the base of his brain. It is normal for people who had had this type of surgery. They also believe he did have some type of virus too They did do an EEG on him and it showed some questionable activity. We now carry anti-seizure meds just in case with us at all time since we now know he is capable of having them.
This year has taught me so much. I knew when to keep pushing for answers and to never give up. Always listening to the mama instinct! Even though we added more and more doctors to our list we had to keep going until we got the right answers. We will still keep pushing for answers when we go to our doctor appointments next year. I have found what my strengths and weaknesses are. I have tried to keep strong throughout this journey but there are times I have found myself in tears because there is only so much a mother can do. You can't take the pain away when your child is screaming because his head hurts or other body parts hurt or your child is crying because some kid made fun of his scar on the back of his head. I tell Brennan he earned that scar. He is a warrior. Don't let others bring you down. I worry about him everyday. I always pray for a good day but some days that is not the case. I have learned you have to be your child advocate. There is no better person that knows your child better than you. Always fight for what he/she needs. I am always posting things on my Facebook page about Chiari and EDS. I know some people get tired of seeing it. I post it to make awareness about it. I like to keep others informed of what Brennan goes through on a daily basis. It may help others out to understand what these conditions are. One thing I want to make sure people understand is this.. just because Brennan has had 2 surgeries, does not mean he is cured. It only slows down the progression of this condition. Chiari and EDS are both non-curable conditions. He will live with this the rest of his life.
This journey continues but I am praying his journey has a little bit of light at the end of the tunnel for 2016. Praying for no surgeries. Praying for a much better year than this year. To the other Chiari fighters going though hell.. keep fighting and keep spreading awareness.
This journey continues but I am praying his journey has a little bit of light at the end of the tunnel for 2016. Praying for no surgeries. Praying for a much better year than this year. To the other Chiari fighters going though hell.. keep fighting and keep spreading awareness.
