Joseph’s Journey
Hello Family and Friends,
We wanted to share the latest chapter in Joseph’s journey with you. I’m sorry that this e-mail has not come sooner. I know that some of our family did send out e-mails and many of you have been praying and waiting to hear an update. We so greatly appreciate all of your love and heart-felt support!
On Sunday, June 24, 2007 at 5AM Joseph woke up screaming that he had a headache. Soon after he began to vomit and we were on our way to Madison with Joseph in obvious shunt failure. After having a shunt revision, Joseph never came back to his normal self, and 5 hours later began having a headache again. We thought he needed another shunt revision, however, a CTScan showed that his brain ventricles had collapsed and were almost gone. This situation is classic for “Slit Ventricle Syndrome,” which we now know Joseph has. Anyway, instead of just a shunt revision being done, he also had an emergent Intracranial Expansion. The hope is that by expanding the skull and giving the brain more room, Joseph will not need shunt revisions as often.
Chris and I were hit pretty hard with this all, because if you remember from our previous e-mails, we had really tried NOT to have Joseph have to go through an expansion. The emotional ramifications for us were tough, but that was only the beginning. Watching what Joseph had to endure was more heart wrenching than I could ever express. Incredible facial swelling, black and blue ears and neck, weight loss and overall emotional sadness.
On Thursday we were able to take Joseph home, hoping that by coming home he would begin to eat again and his morale would be lifted. However by Saturday he began having headaches again, and on Sunday we had to go back to Madison for another shunt revision. This time on our way to the OR, Joseph was yelling,”I hate the hospital! I don’t like this room! I didn’t think I’d be back here so soon…!” It was really hard to see him have to go through this all yet again.
We came home the following afternoon. The healing process continues, both physical and emotional healing, not just for Joseph but also for our family. We are thankful that since July 1, he has not had any sustained headaches, praise God! It really is a day by day and often a moment by moment kind of life…that is both very difficult and very character-building. When we were in the darkest part of this all, God kept impressing a song upon my heart. It is called, “Praise You in this Storm.” I’d like to close with those lyrics.
“I was sure by now God you would have reached down and wiped our tears away, stepped in and saved the day. But once again, I say amen and it’s still raining. As the thunder rolls, I barely hear your whisper through the rain, “I’m with you,” and as your mercy falls I raise my hands and praise the God who gives and takes away. And I’ll praise you in this storm, and I will lift my hands. You are who you are, no matter where I am. And every tear I’ve cried you hold in your hand. You never left my side and though my heart is torn, I will praise you in this storm…”
Amen. Love, Chris and Angela
January 23rd, 2008 at 3:03 pm
Hello! I’ve just come across your site. I pray that Joseph is doing well. I also have a son with hydro and he had to have a cranial expansion surgery last July. He is now 3 1/2 and doing well. You mentioned Madison and I was curious if that was Madison, WI. I hope and pray that you are done with hospital visits for a VERY long time.
Thanks!
February 5th, 2008 at 1:04 pm
Thank you for sharing your story. Our daughter, Sarah, is now 22 and we have put off the cranial expansion as long as possible. Sarah has had 65 shunt revisions - most of those in the last 5 years. Slit Ventricles are wearing us out!! Expansion surgery this Thursday. I am a little hopeful but very nervous. Your story has encouraged me so much today. I have been playing “I will praise you in the storm” all week!!
Blessings to you.
February 7th, 2008 at 8:25 pm
Thanks for your message Cheri. Yes, Madison WI…our neurosurgeon, Dr. Iskandar, is wonderful! I’m glad your son is doing well. Joseph was in the hospital between Christmas and New Year’s due to an awful headache. They ended up doing ICP monitoring for two nights. There were no real answers, but he has been headache free since then. We’re thankful for each and every blessing along the way!
April 16th, 2008 at 1:31 pm
thank you for sharing Joseph’s story and updates. I have a daughter; Adora who is 2-1/2 and has Congenital Hydro. May God continue to give you peace and carry you through the storm and the sunny days.
Debi Norris. you can read our story on Gabriel’s life under adorasmom
May 20th, 2008 at 8:20 am
Hello, I came across this site from the Hydrocephalus assoication. I will keep praying for Josheph. My son also has hydrocephalus due to a cyst in the ceribellium area. he has his shunt put in at age 1 and is now 12 going on 13. We have be very fortunate with no shunt revisions but are now facing the side effects of calification build up around the shunt tubing in the neck. I am here in the Milwaukee,WI area and wonder if you would recommend a nerosurgeon for my son. Ours has moved from childrens hospital to a private practice working on adults. Again you are all in my prayers and thank you for your updates.
September 26th, 2008 at 4:16 pm
A very good post.