Monday, August 24, 2009

Update...


So, I know that it has been a while...


Just wanted to let anyone out there know that my 10 year old is going to be having surgery on her spine at UVA Hospital in September. She is not having the surgery because of anything that is necessarily "wrong" with her spine, it is because of some bladder problems and the Urologist thinks that the underlying issue may be from her spine.


She could use some prayers. Right now, I am not sure that she is really thinking about what is going on, but I think as time gets a little closer, she may get a little more nervous.


Please keep her in your prayers for the next month as we go through the surgery and recovery period.

Prayers please!


I know that there are a lot of you guys out there that pray, and right now, I could definitely use a lot of prayers!


In July, I met this wonderful guy, Brad. He is in the National Guard and he was home on leave from a deployment from "the big sand box overseas" when I met him. He swept me off of my feet and truly believe it was love at first sight. Brad, unfortunately, had to return to the sand box overseas and could definitely use all of your prayers! I am attaching a picture so that you can put a face with who you are praying for.


Thank you and God Bless you!

Wednesday, April 30, 2008

Pediatric Neurosurgeon

We got a super quick appointment with the Pediatric Neurosurgeon at UVa. When I called their office to schedule an appointment, they informed me the Doctor only has Clinic hours on Tuesdays (bummer)...

The Neurosurgeon did a quick exam on "P," talked to her some, asked us a few questions and also showed us the MRI of her lumbar spine at the visit as well. He said that P has some tethering of her spinal cord, but right now this is not of major concern. Her spinal cord is where it should end, which is about L2. He said that while this is something that he is able to operate on, this would not be something that he would guarantee would "fix" P's bladder incontinence. He also feels, as do I, that operating now would be doing so prematurely. He would like to wait another year, follow up with the Urologist and basically exhaust everything we can with the Urologist, and then see where we are at.

He does want to get another MRI done in order to rule out a Chiari Malformation (in the back of the brain) which may contribute to the hydromyelia, which SOMEHOW ties EVERYTHING together and could possibly be the reason behind her bladder incontinence. If she has a Chiari Malformation, this would definitely change things as far as surgery is concerned.

He also wants to get an MRI once a year for the next several years to watch the hydromyelia for growth/non-growth.

The hydromyelia is an abnormal widening of the central canal of the spinal cord that creates a cavity in which cerebrospinal fluid can accumulate. You can read more about it here http://www.ninds.nih.gov/disorders/hydromyelia/hydromyelia.htm.

So, for now, we are scheduled for the end of May for the next MRI. The Doctor said that he would call me about the outcome of that MRI, instead of me having to drive all the way back down, unless something looks really bad - in that case, I hope someone would tell me while we are there and not wait.

On pins and needles for now...

The dreaded MRI

We got the MRI done on April 11. "P" was very apprehensive about getting it done. After having the urodynamics test done, she didn't want to have any other tests done. Then she blames me and says "it's all your fault that I have to have these things done," just because I want to get to the source of her problem. I have tried to explain that to her.

So, we get to UVa Hospital and I have told her by now that she has to be sedated and that they have to give her medicine to have the MRI. Well, she starts thinking back to when she had her eye muscle surgery, and thinks that they are going to try to completely knock her out. So, I am laughing at her, while she is being brave and telling the nurse that "she doesn't need anything like that, she can lay still in the MRI, she promises!!!" They give her some sedation pills and she goes off to sleepy land.

The MRI, I am told was going to take approximately 45 minutes. (This is supposedly just a lumbar MRI.) I am sitting in the MRI with her and watching the clock and an hour passes and I am wondering "what is going on? what is taking so long?" Then the technician calls in and says "we are looking at the pictures, it will be just a minute." So a couple minutes later, the technician, the nurse and another lady come walking in and I hear "they don't like what they are seeing so they want a few pictures with contrast," and they pull P out of the MRI. By this time, her face is bright red, she is burning up and she's crying. Apparently, she may have had a reaction to the sedation meds that were given to her, so we've made a note of that from now on - that med won't be given any more. When I see her crying, and I hear what they say, I start to cry. This is my only baby... So we get through the last of the pictures and head over to our clinic appointment (which we are already late for).

When we get to Clinic, the Nurse Practitioner tells us that they won't have the results of the MRI until probably Monday (this was Friday) and that she would call me as soon as she heard the results of the MRI.

On Monday, I received a call from the Nurse Practitioner. She said that P has a hydromyelia in her spine as well as some scoliosis and that she wants her to see a Pediatric Neurosurgeon and maybe a Pediatric Orthopedic surgeon as well. The hydromyelia by itself is enough to be able to cause the bladder problems that P has, which is why she is referring to the Neurosurgeon. She is not sure about the scoliosis, she is still waiting to hear back from the Orthopedic. So now, we will see the Neurosurgeon.

Tuesday, April 29, 2008

The Big Words

At one of the first visits with one of the medications the Doctor gave to us, we were given a prescription for Glycolax. The Nurse Practitioner told me to mix Glycolax (Miralax) in "P's" drink as a stool softener, as they were thinking that maybe she might be a little constipated or may be having a little trouble "getting it out."

After several bladder medication changes, we were at Clinic visiting the Doctor one day and they decided to do an x-ray to check her stomach. Later, I found out they were checking to see if she was constipated. The x-ray showed that she was severely constipated even though she was going to the bathroom on a daily basis EVEN WITH the Glycolax. The Practitioner gave us Senna S tablets, which is basically a laxative, for her to take as often as she needs them.

A week after we were at clinic, I received a phone call from the Nurse Practitioner saying that the Radiologist found something on the x-ray that they wanted to look at further and wanted to do an MRI.

And this is where the big words begin...

Sunday, April 27, 2008

First UVa Visit

I took "P" to Charlottesville, to UVa Hospital/Clinic.

The very first appointment that she has before we even get to see the Doctor is called a Urodynamics test. This was NOT a fun test to go through with her...at all! After the urodynamics test, we are directed to the ultrasound room, where she is told that she needs to have an ultrasound of her kidneys...not so bad, only they didn't do well with it because her bladder was not full - DUH!!! she just PEED!!!

We then see the Doctor and the Nurse Practitioner - who by the way are wonderful and are more informative than our Pediatrician's office!!! They ask about her medications and the therapy that she had been on, etc. and tell us that the urodynamics test looked pretty normal as far as the neurological aspect is concerned - meaning they did not think that she had anything neurological causing her bladder problems.

They changed the bladder medications and checked her urine for infection and told us to call back within a couple weeks and let them know how she was doing on the new medication.

The Bladder Problem (Part I)

"P" has had constant "wetting accidents" for what seems like forever. She potty trained very well and I don't recall her really having accidents after she potty trained.

Somewhere after she was about 4 years old, she started having these wetting accidents. I don't remember how frequent they were, just that on occasion she was wet. By the time she started Kindergarten, I remember the Teacher asking me several times to send extra clothes for her because sometimes she needed to change because of having these little accidents, but these were normal for this age.

By first grade, she was still having these accidents, only they seemed to be getting a little worse. The summer before, I had taken her to her pediatrician and he suggested that we try a medication, which only made matters worse. I took her back again at a later date and they suggested that we try eliminating anything with red dye in it (such as juices), which some children are allergic to. This did not seem to have an affect on her at all.

By second grade, these accidents only seemed to be getting worse and worse. The summer after her second grade year, I decided that I needed to ask her pediatrician for a referral to a Urologist. After seeing the Urologist locally, she started P on some medication and suggested that we see a physical therapist for some pelvic floor exercises and keep a bladder diary. After trying the therapy and medication with no real success, the Urologist suggested that she undergo an IVP with contrast to see how her kidneys were functioning. We did the IVP at our local hospital here in Blacksburg, Virginia and followed up with the Urologist. At the follow up visit, the Urologist suggested at that point, that since therapy had not really helped P with her "incontinence" issue and the medications that she had tried her on had also not helped, she felt that she had no other choice but to send P to a Pediatric Urologist, and the closest one to us would be at UVa Hospital in Charlottesville Virginia - over 2 hours away.

First Post

This blog is about my daughter and I, and the medical obstacles we have faced in her life.

"P" was born at 36 weeks gestation (4 weeks early) and weighed 7 pounds 15 1/2 ounces and was 20 inches long. She had no problems at all when she was born, other than jaundice, and came home when I did. She had no problems breathing, no problems eating (though she did not like nursing) and was a happy, healthy baby.

Welcome to our world!