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.
