The light at the end of the tunnel is no more.

Carson had a Urology appointment last Friday and things didn't go as well as planned. It's come to that point to let you all know that Carson is going to be having surgery here in the next month or so.


Carson has been having difficulties with her bladder and bowels. Our urologist (who works hand in hand with our Neurosurgeon ) is 100% sure that it is nerve damage caused by her Chiari Malformation Type 1.

The nerves from her brain to her bladder/bowels are not working correctly and is showing signs of damage.

The 2 procedures that they will be performing during the surgery are called: the MACE procedure (for her bowels) and the Mitrofanoff procedure (for her bladder)

Here is a little info on both procedures.



Bladder:
Mitrofanoff appendicovesicostomy, also known as the Mitrofanoff procedure, is a surgical procedure in which the appendix is used to create a conduit between the skin surface and the urinary bladder.

In the procedure, the surgeon separates the appendix from its attachment to the cecum, while maintaining its blood supply. Then he creates an opening at its blind end and washes it. One end is connected by surgical sutures to the urinary bladder and the other is connected to the skin to form a stoma. Generally, an incision is made into the umbilicus so that it may serve as the canal for the catheter.

Urine is typically drained several times a day by use of a catheter inserted into the Mitrofanoff canal. The Mitrofanoff procedure allows the individual to self-catheterise so that he or she is not dependent on a family member or a medical professional to catheterize him or her.

The Mitrofanoff procedure has been found to improve the life of people with spinal cord injuries, by increasing their independence.



Bowel:
A Malone antegrade continence enema, also known as Malone procedure and by the abbreviation MACE, is a surgical procedure used to create a continent pathway proximal to the anus that facilitates fecal evacuation using enemas.

The operation involves connecting the appendix to the abdominal wall and fashioning a valve mechanism that allows catheterization of the appendix, but avoids leakage of stool through it. If the appendix was previously removed or is unusable, a neoappendix can be created with a cecal flap.

The surgery will take anywhere from 4 - 6 hours. Her hospital stay will be anywhere from 5 - 7 day and recovery is just about 6 weeks.

I have a feeling this will be a hardest surgery yet. As Carson gets older she will learn how the cath both stomas and become very independent but in the mean time, Matt and I will have our work cut out for us.

Thanks everyone for all your thoughts and prayers.

Is it HOT enough for you Wisconsin?

Holy Smokes....I can not believe how HOT it has been here in Northeast Wisconsin the last few days. Temps up into the high 90's with the heat index reaching 105 - 110. Did I mention that is with 100% humidity? It is so hot, that going to the pool isn't even enjoyable unless you are in the water up to your nose. It's crazy, and many Wisconsinites are NOT use to it. It could go away any day now!

I guess I shouldn't complain. 6 months from now, Wisconsin will most likely hit it's all time cold temps of the year at around -20 below WITHOUT the windshield factor.

So I guess the kids and I will get a good movie (or a book) and hunker down for the day until it cools off.

Happy sweating my friends!

Spring Break 2011

Mt. Olympus, Wisconsin Dells

The kids had a great time, but the big water slides were way to much for my little guys to handle. They had a great time playing in the little kid area with Kenzie.

I think everyone is ready to head back to school tomorrow!!

Life

Oh gosh, I have been away for so long I can't even remember how to blog. As I was sitting here trying to figure out how to title this post, nothing was coming to mind. I have been away for so long, that I had even forgotten my login and password combo. How crazy is that?

Most of you that follow me here also follow on Facebook so you aren't totally out of the loop with my life. For you that don't follow on FB, so much has gone on that I can't even imagine trying to figure out how to catch you up, so I will have to make a very long story short.

As you know I have kiddos with medical conditions. Since December, Keegan and Carson have been my struggles. Keegan with his Chiari Malformation and Carson with her Chiari and neurogenic bladder.

Keegan has been struggling with big time leg pain since July 2010. In September of '10, our NS placed Keegan in a hard cervical collar to see if we could figure out his pain. He has been in and out of the cervical collar since September. It is now March and we are still playing with his symptoms. When Keegan is in the collar, his leg pains go away, when he is out of it for sometime, the leg pains come back. Again, it has been like this since September, but our team can't figure it out. He has symptoms of cranial instability, but his scans look OK. So it has been a big mystery.

As our last NS appointment, Dr. I was almost certain Keegan will need a craniocervical fusion. They would use rib graft and fuse the skull, c1, c2, and c3. 

 I am not sure when this will happen. Because there is no concrete diagnosis of cranial instability, we need to make sure 100 % that the fusion will help Keegan. So at this point, only time with tell.

Little Miss Carson! Oh, its been a wild ride with Carson. In the month of  February alone, we were admitted to the hospital on 3 different occasions.

This poor little girl has been complaining of stomachs since the end of November and no one can figure it out. We know that she has a tendency to became constipated fairly quickly. During one of our Urology appointments, we were advised to see GI at Children's. We got in with GI, and Carson stumped them as well. We have done numerous clean outs, we were even admitted to the hospital to have a clean out done there. They placed an NG tube in and she was hooked up to Golytely. This girl went through 4 - 4 litter containers of fluid before she was all cleaned out. It was insane!  She also has had an upper GI and an upper scope done. Still, nothing was found.

We went back to our Urologist for an appointment a few weeks ago and told him about the issues Carson is having.  Because Carson has neurogenic bladder and now bowels we were advised to stop treatment with the GI team and instead be treated solely by Urology.

At this point in time we are doing cone enemas. It seems to be working fairly well, and so far no complaints from the patient. It is, however looking like she will have to have a procedure called the MACE procedure done:

(A cecostomy or MACE (Malone Antegrade Colonic Enema) surgical procedure is performed when other therapy techniques have not helped severe constipation or fecal incontinence, the loss of bowel control. These procedures are usually only performed after other techniques to manage constipation or fecal incontinence have proven unsuccessful. This procedure gives the child, or caregiver, the ability to completely empty the colon by giving him or herself an enema through a small opening in the side of the abdomen.

MACE Procedure


The MACE procedure is similar to the cecostomy in that a small portal is made at the beginning of the large intestine. Instead of using a catheter as the passageway for the enema to flow through, the MACE procedure uses the appendix. The appendix is brought to the surface of the skin where a small opening, or stoma, is made)

This is a huge reconstruction procedure that will be permanent. its about a 9 hour surgery and takes 6 - 8 weeks to recover. So. We will see what happens. I have talked to a few parents who's children have Spina bifida who have had this procedure and everyone loves it. I am hoping that we love it as well.

So, that has been my life the last few months, besides all the other daily stuff that goes on with a family of 6.

Sorry for being away so long, but I just didn't have the spare time to write.