Jaxon and Hayden Update

So here is a little bit of what has been going on these last 2 days....and we even have tomorrow left!! 

Yesterday: After we got here safely (the roads were pretty icky), Jaxon had an MRI, that took about an hour (and waiting at least that to get into the test), he did AWESOME in the tube! He also had some blood tests.  Hayden had been feeling really icky and had had no sleep from the night before (we think bad gas pains). so we went to the hotel and kept extra warm...it was FREEZING outside! We went to bed early and got a good night sleep, cause we knew we needed to be up early the next day :)

Today: We had to be up at the peds clinic at 7am for blood tests for Hayden. Then we picked up Jaxon and Mom for our next appointments. Hayden had urinary x-ray, then an abdominal ultrasound. Grandma went with him, cause it was really close to Jaxon's neurology appointment. When we were in that one, he also had to go to his Urodynamics test, that fills his bladder up to see when he starts having pressure to pee, and starts leaking. 

So Jaxon and I were in Neurology....and were there for a long time!! They did a whole neurological work up on him. He did a great job today in that area, but his MRI scans sort of told us why he has been having these issues as of late. Dr. Keating (his neurologist and the neurological radiologist) feel that he had spinal fluid around his optical nerve (eyes) and his pituitary glands. He has had this, that we found by chance in 2011, with a routine eye exam, and thought it was due to going off of steroids too fast. All we had to do then is go back up on steroids and taper off slowly. But now we are seeing it again, and know that it isn't the meds, since he wasn't on steroids at this time, because of his infusion he gets every month (that has been helping a ton, and that he hadn't started yet as of 2011). Here is a little copy of what it is, better than I can explain it...

What is hydrocephalus?

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The term hydrocephalus is derived from the Greek words "hydro" meaning water and "cephalus" meaning head. As the name implies, it is a condition in which the primary characteristic is excessive accumulation of fluid in the brain. Although hydrocephalus was once known as "water on the brain," the "water" is actually cerebrospinal fluid (CSF)--a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain.

Here is also more information about it in a couple of paragraphs that show how it is diagnosed and treated....

What is the current treatment for hydrocephalus?

Hydrocephalus is most often treated by surgically inserting a shunt system. This system diverts the flow of CSF from the CNS to another area of the body where it can be absorbed as part of the normal circulatory process.

A shunt is a flexible but sturdy plastic tube. A shunt system consists of the shunt, a catheter, and a valve. One end of the catheter is placed within a ventricle inside the brain or in the CSF outside the spinal cord. The other end of the catheter is commonly placed within the abdominal cavity, but may also be placed at other sites in the body such as a chamber of the heart or areas around the lung where the CSF can drain and be absorbed. A valve located along the catheter maintains one-way flow and regulates the rate of CSF flow.

What is the prognosis for hydrocephalus?

The prognosis for individuals diagnosed with hydrocephalus is difficult to predict, although there is some correlation between the specific cause of the hydrocephalus and the outcome. Prognosis is further complicated by the presence of associated disorders, the timeliness of diagnosis, and the success of treatment. The degree to which relief of CSF pressure following shunt surgery can minimize or reverse damage to the brain is not well understood.

Affected individuals and their families should be aware that hydrocephalus poses risks to both cognitive and physical development. However, many children diagnosed with the disorder benefit from rehabilitation therapies and educational interventions and go on to lead normal lives with few limitations. Treatment by an interdisciplinary team of medical professionals, rehabilitation specialists, and educational experts is critical to a positive outcome. Left untreated, progressive hydrocephalus may be fatal.

The symptoms of normal pressure hydrocephalus usually get worse over time if the condition is not treated, although some people may experience temporary improvements. While the success of treatment with shunts varies from person to person, some people recover almost completely after treatment and have a good quality of life. Early diagnosis and treatment improves the chance of a good recovery. 

So on the 6th and 7th of Feb. we will be down here again for 2 more big tests (for Jaxon). An EEG which will be a long, but easy test measuring his brain's electrical activity. And a spinal tap, which will take a first look at the pressure there (and if it is high they will take some spinal fluid off until it is at the right level, which will help right away to make him feel better!) Then with that fluid they will run a lot of tests on it  to make sure that everything looks right. Then we will go from there and see where it leads us, but it is it all for Jaxon in a nutshell...Oh WAIT...after that he had an appointment ophthalmologist and had tons of different pictures of his eyes, which took us into Hayden's Urology appointment.

We also learned more than we thought we would in Hayden's appointment. I really liked his Dr. she knew what she was talking about :) First off, his bladder is not holding the amount of urine that it should. It should be able to hold as much as an adult bladder and isn't even holding a small cup of water (only 60 cc's). There is something not right...not only that but he is leaking often and shouldn't be. He is also constipated often and need to be addressed. That is the easy part though, we will just be using Miralax (sp?) daily. That will help him be more regular, and is healthy for him. And if that is working like it should, it will keep his bladder happier too because his bladder is right in front of his bowels, and if they are full it is always pressing on his bladder and making it spasm.  His sphincters are not working right, and his bladder augmentation may not have been done properly. So in order to see what is going on, they will be doing another test, to see where the problem is (or at least part of it). It is an easy test...fill up the bladder and x-ray it as it fills and gets full, then empties. But no matter what that says it looks like we will be doing another surgery to fix the neck of his bladder, put in a shunt in there, and a sling to keep the sphincters tight. Then they will check out everything else out, and fix everything that was done wrong. He will be in the hospital for at least 2 nights for recovery (if there is nothing but the neck to fix, if there is more he will be in for a week or so), then he will have a cath in his belly and "the other" cath in for 3 weeks, to heal. Then he will be all set, and ready for the rest of his life with a good augmented bladder. He won't be able to pee on his own (only able to cath thru his belly, which is what it is actually meant to do), but he won't leak ever, he won't be as sensitive inside his bladder. Where he actually puts the cath into his bladder, they used his appendix to create a tube from his belly button to his bladder. Right now it is sticking out (prolapsed), which bleeds A LOT all over his shirts, this is irritating, sore and embarrassing. They will also trim that down, so it hardly shows, and therefore won't bleed :) 

Okay that is it for today...

Tomorrow we have important things going on too! Hayden has the day off (except to wait around for Jax). Jax has blood tests right away at 7am, then at 8:15 he has a hand x-ray with appointments later with his Endocrinologist and Rheumatologist. Then we will be heading home...and it probably won't be till like 5pm. So you can pray for a little added strength driving home! 

That is all I have for now...not much info at all right?? Yeah right...but at least you know all that I know now. Thanks for praying for us, it always helps! ~Andrea, Judy and the oldest, and youngest Knick boys :)