Thursday, August 11, 2011

Q & A

Can you tell that Ryder is back to his normal, happy self? You would never guess by watching him that he had brain surgery just a few days ago! He is extremely happy to be home where he can get down on the floor, go all over the place, and play with his toys. And we are ecstatic that we can let him play in more than a 3’ x 6’ area! We have been asked several questions about Ryder this week, so we thought we would put the answers to some of those questions here along with a few others that we thought people might be curious about but are hesitant to ask us. So here goes our little Q & A session.

What is a shunt? Why does Ryder have one?
Ryder has a condition called hydrocephalus. This means he has too much spinal fluid in the ventricle in his brain. You might remember that when Ryder was born, he had a bleed on his brain. After the bleeding stopped, the spinal fluid did not drain properly from his ventricle. So his neurosurgeon placed a shunt into the ventricle. The shunt drains the excess spinal fluid from the ventricle to his abdomen, where it is absorbed by his body.

What did they do in Ryder’s surgery on Sunday night?
The shunt has three parts: the tube that goes into the ventricle, a valve, and another tube that goes down to his abdomen. Any or all of these parts can break/malfunction. We have known for about a year that the tube that goes into Ryder’s ventricle was not in the most optimal position, but it seemed to be working. It may have just been slowly working less and less. Last week, the doctors thought something might be wrong, so they scheduled an MRI for Friday. We were supposed to follow up with neurosurgery this Tuesday morning, but we didn’t make it to that point. When we got to the ER on Sunday morning, they looked at Friday’s MRI and said that the ventricles looked larger than Ryder’s last MRI in December, but nothing too alarming. (If the ventricles are increasing in size, this is how the doctors know that the spinal fluid is not draining properly.) The neurosurgeon on call decided he would like to get a cat scan to see if there were additional changes. It turned out that Ryder’s ventricles were larger on Sunday than they were on Friday. While it was still not a huge difference, it was obviously making Ryder sick. They also did x-rays to look at the entire shunt and see if any part of the tubing was broken. Nothing appeared to be an issue other than the tube that was not in the right spot going into his ventricle, so that’s what they fixed. They replaced the portion of tubing that goes from the ventricle to connect to the valve. They tested it in surgery and it worked much better. So they stitched up the two incisions they made on his scalp and returned him to us. 24 hours later, he was almost back to normal.

Can this happen again?
Yes, and unfortunately it’s likely that it will. When Ryder first got the shunt when he was teeny tiny, we were told that statistically the average life of a shunt is 7 years. Some kids only have a few surgeries, some have way into the double digits, and some may only have one. We hope for no more, but we have to be aware that the shunt is a man made device that can never be perfect. It is possible that it could malfunction again and another surgery would be the only way to fix it.

How do you know what to watch for?
Vomiting, lethargy, and headache are the primary signs of a shunt malfunction. Since Ryder can’t yet tell us if his head hurts, we have to pay close attention to him when he’s throwing up. If he’s really tired along with vomiting, we go to the ER to get it checked out. Normally, if he has fever with those symptoms, it’s a good thing. It means he’s just sick and it’s not related to his shunt. For the next few months, however, fever, vomiting, and/or lethargy could mean infection. He’s at risk for infection for a while since he just had surgery. And infection would be bad since his brain is involved.

Ryder has cerebral palsy?
Yes. Cerebral palsy was also a result of the bleed on Ryder’s brain when he was born. Ryder’s CP primarily affects his lower body. It causes the muscles in his legs to be very tight. He is very strong and it is difficult in general for him to bend his legs or bend at his hips or ankles. His brain is unable to control his muscle tone because of his CP.

Will Ryder walk?
We don’t know. His doctors or therapists don’t know. Only the Lord knows that answer. It is, however, our great hope that he will stand, walk, and run one day. He has “boots” (orthotic braces that we affectionately call his boots) for his legs that help him tremendously to stand. Ryder naturally points his toes because of the muscle tone that goes all the way from his hips to his feet. His boots keep his foot bent at the ankle and break up his super strong muscle tone. He is able, with help, to pull up, stand and take steps while he’s wearing his boots. He even sits so much better when he’s wearing them. It’s really amazing to see what a difference they make. So you might be wondering why he doesn’t wear them all the time if they help him so much. The issue is that Ryder’s primary mode of transportation is army crawling and they limit his crawling because of the way they hold his feet. It’s just too frustrating for him to wear them when he’s on the floor playing and crawling, and we want him to be able to have fun. So he wears them only when one of us or one of his therapists is working with him to practice sitting, standing, or walking.

What does a typical week for us look like?
Ryder goes to physical therapy every week and occupational therapy every other week. Beth Anne takes him to those appointments and Jeremy has been able to start coming to physical therapy some too. The therapists work with him on all of his motor skills, both gross (PT) and fine (OT). They stretch his muscles to try and keep him as loose as possible since he has such high tone. He also has speech therapy twice a month. Speech is through ECI (Early Childhood Intervention) and it is done at our home. While all of his therapists do a lot of work with Ryder in their time with him, they are also giving us the tools to work with him when we are on our own at home. It’s important that we help him “exercise” as much as possible. That’s one reason we’re so thankful Beth Anne gets to stay home with him!
In addition to therapies, we usually have some kind of doctor appointment at least a couple times a month. Ryder has trouble gaining weight since his muscles are working and burning calories all the time, so we have lots of extra visits to the pediatrician for weight checks. Then we have neurology, neurosurgery, and ophthalmology from time to time. I may even be leaving some kind of doctor off of the list. It’s hard to keep it all straight sometimes!
Even with all of this, we think we still lead pretty normal lives. Every once in a while, there’s an overwhelming week, but we try to keep it all pretty spread out. We do our best to make sure that Ryder has fun and enjoys life. And he brings so much joy into every day of our lives!

Do you get sad?
Yes, it definitely makes us sad to think about future hospital trips being inevitable. It breaks our hearts that Ryder has so many obstacles to face, obstacles that we or most people never had to overcome. It brings us to tears that our son can’t do things that other kids his age do and that he will likely have his feelings hurt by things other kids or even adults will say to him or the way they look at him. While these things and many others make us sad, we are confident that Ryder is who he was created by God to be. The Lord knew long before we would have a son that it would be Ryder and that he would have hydrocephalus and cerebral palsy. And we would not want him to be anything other than who God made him for one second of one single day.
And the happy, fun times FAR outweigh any sadness. Ryder has the best smile and sweetest laugh ever! If you’ve been around him for more than about two seconds, you’ve seen that smile and if you’re anything like us, you can’t get enough of it! He’s quite the social butterfly (if you can call a boy a butterfly). We very rarely go someplace that he doesn’t say “hi” to everyone he passes…and continue saying “hi” until they respond or acknowledge him somehow! Ryder is a smart boy…he certainly keeps us on our toes with the ways he figures out how to get into anything and everything. There are definitely ways that he is just like any typical toddler!

Whew! That concludes today’s Q & A session that turned out not to be so little. All of this may sound overwhelming or even a bit depressing to you, but please know that we are only overwhelmed a very small percentage of the time and we are absolutely not depressed. We are extremely blessed to have Ryder. God chose us to be his parents and gave us an amazing gift in him. We love him like crazy and he makes us so incredibly happy! If you ever have questions about Ryder or want to know how we are dealing with his hydrocephalus and/or cerebral palsy, please don’t hesitate to ask us. We desire so much to make much of Jesus as we walk this road with our sweet son and we hope that we are able to do that by being open and honest with our friends, family and God.

1 comment:

  1. Thank you so much for sharing your feelings. It is such an encouragement for me to be reminded that God has a special plan for our kids and despite any disabilities He is and was, in control. I still struggle at times with thinking that if I had done something differently Andrew would have turned out fine. But everything happens for reason, to GOD be the glory! Miss you guys and the rest of our church family at City View!