Surgery 7/22/09

Isaac had his MRI's yesterday. We went to the neurosurgeon after to have his shunt turned back on, the magnet in the MRI turns his programable shunt off. While in the office the surgeon came in and told us that Isaac needs 2 surgerys. The first on which will be on the 22nd at 7:30 will be on his spine, to remove scare tissue. This is called unteathering his spinal cord. This surgery will be very long as the surgon has to place sensers on all his nerves so he can monitor what is being cut, so that he doesnt cause life altering damage. He will be in the hospital 4-5 days if all goes well. He did explain that there is a risk of spinal fluid leaking which increases his chance of infection and meningitis. Also a chance this could paralize him. The second surgery will be 3 months after this one. This on will be the same as little makenzies. They will go in and remover part of the skull, brain stem and spine, to releve the pressure from the brain stem dropping into the spinal canal.
Isaac is having a hard time with these surgerys. Yesterday on the way to the hospital he told me he was done with surgery and didnt want to do anymore. so please pray for him. This is alot for a 7 year old to go threw. These will be Isaacs 10th and 11th surgery. Please also pray for my husband and I. We also are having a hard time this go around. It breaks our hearts to watch our little ones have to indure so much, This will be the 17th and 18th surgery we have went threw with our little ones. They are such special children of God, I know God is awsome and will provide and heal them. I also ask that you pray for there big brother Brent, as he to can feel the tenson and stress and is worried about his brother.
I would like to thank all who read this and pray for my family. I would like to say a BIG thank you to wellspring Baptist church for all your love and support. We appreciate you all so much and you have been a huge support for us.

UPDATE on Roberts mom,
She is still in the hospital and holding on. The Dr. said it will be anytime now. They have moved her out of ICU and put her on comfort measures only. Her vitals are weak. She wakes up from time to time to see who is with her. Please keep her family in your prayers as well.

Robert needs prayer

We received a phone call this morning at 6:45am, His mom has been fighting cancer for a few months. She was sent to the hospital this morning having trouble breathing. When she got there she was sent to ICU. She has alot of blood in her urine and breathing is very deep and hard. her blood pressure is very speratic ranging from 98/46 to 170/139. The doctor came in this after noon and said he gives her maybe 24 hours. She has refused all life prolonging messures. Please keep her in your prayers as well and my husband and his family.

Sorry I havent posted in a while we are all sick. It's kinda like a cold but with the body aches like the flu. We are still waiting to go on the 29th for the MRI's I will post a update then.

Another update

Well the Dr. called today, The MRI's are scheduled for the 29th a little farther out then the surgeon wanted, but since it takes the whole mornings slots this is as fast as they could get him in. He will be put to sleep for the procedure. We will see the Dr. sometime that week to schedule surgery. Isaac is having a very hard time with knowing he has to have surgery again. Please continue to pray for him.

As for the heart there is nothing they can do, he will out grow it when he's a young adult. The nurse said this is pretty common in young children. I have never heard of it myself. But we praise God that that's all it is. Once again thanks for all you prayers and support.

Update on Isaac

We took Isaac to his Dr. in nixa this morning and over to St. John's for a EKG. The good news is the EKG is normal. The not so good is that when he breaths his lungs expand and squeeze his heart causing it to beat faster. When he breaths out the heart has room to relax and beat normal, causing his heart beat to be irregular. we are waiting on the Dr. to call and give all the details, he didn't give may this morning, he wanted all the facts before he went into any detail. As soon as we know more I will let you all know. Still no news on when the MRI's are sceduled for. Thanks so much for your continued support and prayers!

Prayer needed

Today Isaac went to see his neurosurgeon He has been having problems with walking and complaining of a lot of back and leg pain. We knew surgery was in his future this summer. He will be having 4 MRI's over the next week. They are checking his shunt, his neck for chiari and his spine for tethering. We are pretty sure he will be having surgery on his spine but the doc. wanted to rule out some other stuff. I will post about the MRI's as to when and things, when they call with the dates. We will be traveling to Springfield a lot this week from the sounds of it.

Also we need your prayer for Isaac as they were doing there routine checks they found he has a irregular heart beat, This is new to us he has never had this before. So tomorrow we are traveling to his pediatrician in nixa to have it checked and possibly be sent to a cardio doc.

It was a very long trip home today as you could imagine I'm sure. I'm driving trying to hold my emotions in check. when we stop for gas I look back and Isaac is sitting all buckled in trying to be strong as well. When i notice his tear filled eyes, He looks at me and says "mom am I going to die". Ok at this point my checked emotions flew out the window as I look at him, My mind racing for the right answer, and say no your going to be fine lets pray and God will take care of it all. He has been very quiet today not talking much and very emotional so please pray for God not only to heal him physically but emotionally as well.

And please pray for Robert and I as we go threw this. For strength and to find peace in the middle of our storm. Thanks for your prays Jennifer

Leading up to his arrival

That day we left the doctor scared and not real sure what to do. I went threw all the stages of healing, To be honest you have to morn the loss of your "perfect" child before you can except your new adventure and it took a while. there are 7 stages of healing and i hit them all some more then once here are the stages:

• Shock or Disbelief: This is the fastest to get over although you often come back to the question why which will never be answered in this life
  

• Denial: I didn't really have much problem with this although i did say many times what if there wrong
  

• Bargaining: I didn't bargain much i did pray that if God would fix him I would never ask for anything again.
  

• Guilt: now this was a big one i still today sometimes struggle with. in the back of your mind you always wounder what if I would of ate better or taken viamins. The ever lingering question of what if.
  

• Anger: was another big one for me, I would go out in the woods find a big tree and stick and just yell and cry and hit the tree. I had to get it out, I had to vent and it got easier everyday. my advice is let it out dont hold it in, it makes things worse
  

• Depression: I did have depression and still do it is hard to watch your children suffer and have surgery after surgery
  

• Acceptance and Hope: and finally i hit the finale stage and accepted that we are in "Holland" and that life is going to be OK. (read poem on this site about Holland)
  

I think what helped us is we went and "interviewed" neuro surgons and knew who was going to be operating and exactlly what was going to happen. Not that they always do, but you at least felt like you had a little control of what was about to happen.

The day i found out something was wrong

It was Feb 06 I went in for an ultrasound because i felt like something was wrong, My husband came with. We went in to have the ultra sound and noticed that the tech was spending an odd amount of time on Isaac's head. She kept leaving and coming back. When she was done we were told to go wait in a room the doctor wanted to see us. At this point we knew something was not right. Usually the tech is excited and showing you your baby moving and things, but this time there was none of that. The doctor came in after what seemed like hours, (really only like 20 min) and said your baby shows an increased amount of CSF in his brain and his ventricles are a little inlarged. I'm sending you to a specialist for more testing, don't panic some baby's have this but when they are born are totally fine. I asked the doctor what it was and he said, we call it hydrocephalus. He asked if we had any questions, of course with news like that you would normally have hundreds but our minds went blank we just looked at him. He gave us our appointment slip for the high risk doc and off we went. I dont think it hit me till i got to our car what just happend, I lost it crying and yelling. My husband just kept saying it will be ok. We went to my parents to get our oldest son. when i walked in the door my mom looked at me and said "is everything ok" I lost it melted down and all i could say is there is something wrong with his brain. I pulled the paper out that i had written down the name of the condition on, not knowing how to spell it we started searching the internet for information, all the links kept sending us to spina bifida sites. I was getting frustrated because as far as I knew, he didnt have spina bifida. as we kept reading I realized that most baby's with hydrocephalus also have spina bifida. Let me tell you the sites out there on these topics are very scary always giving the worst case. Your babys head will be very enlarged, they will never move there leggs, they will need to be on a vent. My mind was racing, we called family to let them know. Finally it was time to go home and wait a very very long 5 days before going to the high risk doc. When the day finally arrived my mom went with to see the doctor. we sat in thw docs office where she explained somethings about the condition and then took us over for an ultrasound, where it was confirmed that he had hydrocephalus as well as spina bifida. I remember laying on the table crying not even wanting to look at the ultrasound screen. She begain taking amnio out with a large needle for testing. As i finally looked at the screen i saw our son trying to grab this odd looking straw that was in his way. It was then that I realized no matter what he was perfect maybe not in the worlds eyes but in Gods eyes.

Holland

Welcome To Holland
by
Emily Perl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

* * *

©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.

What is hydrocephalus

Well this is a condition very common in baby's with spina bifida. What happens is when the spine is pulled it causes tension at the base of the skull. fluid gets trapped in the ventricles and causes them to swell. The fluid is not absorbed as it should. often a shunt is placed to allow the fluid to drain to the stomach or heart. If you would like to learn more, here is a site i viewed when i was pregnant. http://www.hydroassoc.org/education_support/learning

What is spina bifida

Great question! Well basically it is when your baby's back doesn't close all the way, when they are born you can actually see there spinal cord. So with that said here is a little more detail. At about 19 days after conception your baby already has this condition. It is either do to a lack of folic acid or genetics. what happens is when the spine is being developed it does not close correctly leaving an opening. The nerves and spine often come threw the hole. Some have a small sac on there back that protects the nerves and spine this was the case with our daughter. which causes less damage. Or it is completely open and leaking spinal fluid which allows the amniotic fluid to "eat away" at the nerves, this is what our 7 year old has and requiring surgery right after birth. Both cause nerve damage to the point that they have no feeling from the opening down. Many are paralyzed. Making toileting, walking, crawling and many fine motor skills very difficult if not impossible.

A little about my family

My name is Jennifer, My husband Robert and I have 3 children Brent 10, Isaac 7 And Makenzie 3. We live in Missouri in a great town. Our life is a little different then most families. Our youngest to suffer from spina bifida and Hydrocephalus. Our oldest suffers from ADHD, ODD, PTSD, and inability to reason. Our lives are full of doctors, therapist and many surgery's. We are learning the ropes of life in school with disabled children and how to best serve them. We by no means are doctors or therapist. Everything in this blog is from our point of view and experience. As always if there is anything you are interested in knowing just drop me a line and i will get back to you on it.