*** CAUTION when reading these from now on they are full of reality and heartbreak***
Let me preface this with letting you know that Cooks let us go home tonight. We were thrilled with the idea of getting to go home, but scared at what laid ahead. We had crash courses in seizure emergencies, first aid, and cpr. Although, we really need one on one help on the cpr. The neurologist came in again and set down with me and we talked at length. I asked him many questions. I asked him if with the brain he saw on the MRI if Jude could ever be functional. He said "yes, but unlikely". He then told me a story of a little girl that came into him at 13 yrs of age with right sided Schizencephaly. He said she was in a normal class though working at a normal level which is very unusual. This was just one of Jude's diagnoses, but his is affecting both sides. The neurosurgeon we really love came in and sat down to talk with us. He said he agrees with the MRI findings except for 1 condition which has to do with the gyra's (sp?) forming in the brain. Which they explained those were the cauliflower forms in our brains. Jude's supposedly forms very small and close together. The neurosurgeon said he doesn't necessarily agree with that diagnosis. He did agree that Jude would probably never walk, or talk. He did say that there is a possibility he would pass early. He explained that these children tend to aspirate easy and either choke, or form pneumonia from the aspiration. He was more hopeful though, and explained he sees unexplained miracles science will never explain walk out of that hospital everyday. He said on numerous occasions he has the most ill fated MRI produce a functional child, and a 100% normal MRI produce a severley retarded child. He explained that you just cannot have a crystal ball.
So we gathered our room up! I dressed the baby in warm clothes and held him close until it was car seat time. Emily had come to the hospital for the first time to see Jude, and to hear about what was going on. She held up very well, and helped us leave by steering the cart down stairs. We then all loaded into the truck outside, and set out towards the pharmacy to get Jude's prescriptions filled. The pharmacist that normally takes forever, seemed to work in great hast and talked to us personally. I noticed that I have seemed to zone out in these episodes, and work in a task oriented mode like it was a movie I was watching. I answered the pharmacists questions, and discussed the medicines measurements with her. Once we got Jude's medicines I was walking slowly along with Mike and Em, and I guess I spaced out. I asked them if we should grab some pizza here or at home. Mike looked at me and said that whatever would be easiest for me would be the best thing to do. I am not sure what happened next, but everything was spinning and I was blank. Mike grabbed my hand and asked me what was wrong. I quietly said "come on baby don't quit on me now". I burst into tears and I just said I don't know. He said "we are almost home" I just replied in tears "I wanna go home please take me home", and away we went. We then ran in the cold with the wind hitting our faces back into the truck to head home. I realized picking up those horrible medications for my little son just broke my heart. It was reality........it was placing my hands on what was holding his fate. I would kill anyone that intentionally tried to kill me child, but I cannot kill this!
So we finally got home........a very messy unkempt home but still home. We ordered pizza, I tried to call a few family members, and Em cleaned up from the tornado that hit her room. Then Jude was hungry. While eating he began to seize for the first time since early this morning. The med dose was just 20 mins away so the meds from this morning were just wearing off. Emily walked in the room and kind of laughed at Judes position. I realized that she thought Jude was playing with me, and I quietly explained that this is what his seizures look like.....and they got worse. Her little face dropped and all I wanted to do was hold her tight, but I had Jude in my arms. I felt clutched in a tight vice grip and I could not move. She formed tears in her eyes each time she saw his tiny back arch. I explain in a soft tone that they were not hurting him that he was simply aggravated because he didn't understand why it was happening. After 15 mins we knew this seizure was lasting to long, and he needed intervention. Luckily they finally began to stop, and it was time for his phenobarb. Unfortunately, Jude began to aspirate on his last dose, and choked uncontrolably. Our first night home resulted in a 911 call!!! By the time they got here ........ he was luckily ok. They were SO nice but we are in a fort worth annex, and it took them probably 15 mins. Luckily we had listened to the 911 operator, and turned jude on his side, did not beat on his back and counted his breaths. Two hours later Jude is still coughing, but the fact he will cough is good. I was told today they can choke on their own saliva. Emily cried, screamed, and acted like a little adult too. She would watch, and run, and we had long talks tonight. My heart aches for the tiny limp baby I held in my arms, and for my big baby who had tears for her brother. I texted Emmys dad and told him that there is a real possibility something could happen to Jude and to be prepared for Em. He texted the nicest msg back. I also emailed her teacher asking him to enroll her in the school counseling sessions, and will check into support groups for her. I cried tonight and I do mean CRIED! I held him in my arms so tight afterwards. He is SO BEAUTIFUL! He has big chubby cheeks, with perfect pink full lips, he has the longest eyelashes, and curly brown hair. He is a heart breaker. . yet he may never run, jump, play, or know what his house is, what a dog is, or he may never know what a Christmas tree is, but By GOD he will know he has a mommy that loves him with all her heart!!!!!!!!!!! We found out today that Jude does not have infantile spasms which we thought was great. Until we found out his has tonic clonic seizures grand mal seizures which in my understanding are the worst. Jude has been classified as a "severe" case, and in the doctors mind will not make it. I pray he will. I cannot watch Mike throw up much more. I am not sure I can do this either, but I am trying. I wish I knew why. I wish I had answers. I wish someone would explain to me how I could have the childhood I had, and now this! Please tell me. I must have been horrible in my past life. It's such a different feeling to give your child tylenol for a cold, and phenobarb to prolong his life. I have such random scattered thoughts. I better get off this blog so I can gather myself and be more positive. As stated from the beginning though I will always be honest on here.