Tuesday, December 9, 2008

The night from hell!

*** 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.

8 comments:

Jennifer said...

I have everyone I know praying for you. I love you guys very much, please let me know if there is anything you need.

Reagan Leigh said...

I'm so sorry that another parent has to go through this same nightmare. But let me tell you from experience, it gets better. That first couple days home was the hardest for us. There was a lot of crying. Often times kids have both Infantile Spasms AND tonic/grand mal seizures (see the link to Lily on our blog...she started out with grand mals). As I said before, Infantile Spasms is probably the most difficult to get under control, so if Jude does not have it, be thankful. Although, with seizures, you just never know what course they are going to take. What I mean is pay attention. Most kids don't get IS until 6-12 months old (while some get them as early as 2)...you just never know. If you see him having seizures that look like those videos I told you to watch...go get another opinion. Because the quicker and more aggressively IS is treated, the better the outcome. We have to be the neurologists, doctors, nurses for our children. No one cares more for our kids than us and we have to do all of the real leg work! Hang in there and if you need anything, do not hesitate to ask!
Tera

luane said...

Jenn, in all that is going on, make sure to take a few minutes for yourself. Wether it be taking a hot bath, resting your eyes for a few minutes, eating a bowl of ice cream, etc... You are his rock and you need to take care of yourself so that you are strong for Jude.

PurpleQuilterQueen said...

Everyone I've told your story to is praying for you and little Jude too. Take care and please reach out to us all if there is anything we can do. Jennifer

Joy said...

I'm a friend of Mike's sister (Diane). My sister and I are praying for you guys very hard. It was so heartbreaking to read your latest blog.

You are very strong... and Jude is so sweet.

If there is anything at all we can do - and I mean anything - just let me know.

mike ortiz said...

I wanted to leave you a message. I could never imagine going through this with anyone else. I love you so much and admire your great strength. I sometimes feel like Im failing at my most important job, that is to protect You,Em and Jude. I promise I will be there every step of the way. If you fall I will pick you up. If you cry I will wipe your tears. I do believe we came together for a reason. I believe we had to make a very difficult decision some months back. Do we bring a baby into this world knowing he might have problems, we might suffer heartaches, or we might even become a statistic of divorce because of this all. I want to reassure you, on here in front of all of these people. WE DID MAKE THE RIGHT DECISION!!! He is beautiful and Im so very proud of him. I'm thankful for having him in my life! I'm thankful for you and emily! In all of this darkness, I can still see the beauty of it all. Its comes down to LOVE! A LOVE that flows through our family and spreads into the world. For half my life, I have questioned everything. Through every hardship I've wondered why? Why are we here on earth? What is the purpose? And in Jude's eyes I have found the answer thats always eluded me. LOVE. We are here to love each other. Not just our family, but everyone! Some of you may think we named Jude after "Hey Jude". Dont get me wrong I'm a huge Beatles fan, but we named him after St.Jude the patron saint of desperate cases and lost causes. But, even those 4 boys from Liverpool had some enlighten messages in their music.
ALL YOU NEED IS LOVE!
Thank you Jennifer for the light you brought to my life. I love you so much. Thank you God for all of your blessings, even the ones I didnt agree with. Thank you God for all you have done for me and what you're still doing for me now!

Thanks goes out to all of you who read Jennifer's blog. Your comments do help!

Anonymous said...

I don't know you but I want you to know I have walked in your shoes.
You will find the strength from somewhere to keep moving forward.
Our children are here to teach us. You will learn so much from Jude.
Treasure his essence. Make special memories that will last forever.
There is a reason for his being, you are learning that already.
Don't ask 'why me?'. Don't think 'what if?'
You will find a way to get through this.
Jude will show you.
I too held my baby boy through many, many seizures. I tortured myself with questions that had no answers. He taught me to just accept and not reflect.
He decided his time with us here was over when he was 16 years old. Never did we imagine he would be with is that long.
Now 15 years later I can smile when I remember him and thank God for sharing him with us.
Keep strong and cherish the love you have for eachother and
remember Emily is absorbing how you deal with this. You are her strength and she is yours.
From a mum who knows.

Melissa (GeminiStars9 on Sept DDC) said...

Jen,

My heart breaks for you! I am so sorry your family is going through this.

From what it sounds like, you have a wonderful husband!! His message to you was so sweet and it made me cry. I am glad you have the blessing of a caring family that can help each other out through these rough times.

Your family will be in my thoughts and prayers!