A Case of the Februaries

Well….. February has always, always been a tough month for our Laila Ann.  February has historically always landed her in the hospital for one reason or another.  This year will as well, but a little different….

Last January (2015) Laila was at her yearly visit to her specialized school in MI for a month with me.  The third week into the four week program she contracted a severe intestinal infection.  She had also had pneumonia right before travelling there.   A few hospital stays (and a fun wish trip in between!) and we thought we finally had things under control.  During this time she also lost control of her bladder and had to be put in diapers again after 2.5 years of being potty trained.  We were also told by the infectious disease doctor that Laila’s body had become resistant to all the antibiotics that we tried to treat her with for urinary tract infections, which she has chronically.  She would live with a constant bacteria in her bladder and we would only try to treat if she had severe symptoms.  Lots of tough info to take in during that time.

June 2015 Laila had botox for her arms early in the month and never really seemed like she came back from it.  She always has an oxygen drop during the procedure because she is put to sleep but not intubated.  I thought it was just taking her some time to recover but after a month we decided to consult her developmental pediatrician.

July 2015 Laila has diagnosed with epilepsy and that started a road that still continues today of trying to find the right medication cocktail that can keep her alert and functional as possible without seizures.  During this time we also found that her laxative medications were not working and Laila was in a constant state of constipation.  This began a road of changing and trying med medications to try to get that under control.

Sept 2015 Laila had a urodynamics study on her bladder and lower muscles to try to find more information.  This study showed that only a quarter of her bladder was working and also that all of her muscles were working opposite what they should for voiding bowels and bladder.  This led them to believe that her spinal cord may be tethered and she might need spinal surgery.  Two MRIs and a few months later they determined that was not the case.  No explanation as to why her body has begun to try to work against itself.  Urology decided to wait on any permanent decisions while GI started their end of testing.

January 2016 Laila was admitted to Riley for a colonic motility study to test muscles function in her entire colon (large intestines).  We were hoping that she would be a candidate for a surgery to place a port to do a reverse enema each morning to help her bowels.  However, Laila’s test showed no function at all in her colon.

So here we are.  Back to the stupid month of February.   The decision for these problem with her bowels and bladder is to remove her entire colon and place an ileostomy bag.  This is irreversible.  And terrifying.  During that surgery the urologist is coming in to place a monty port in her belly button to be able to manually empty her bladder with a catheter several times a day.  These surgeries will take the constant risk of bowel obstruction and perforation lower and hopefully help minimize the bladder infections.

Laila is such a unique creation of God.  She is amazing and most days you would never know by looking at her how much her body struggles on the inside.

I am one scared momma.  I have good days and bad.  I have joy in each minute with her and sorrow for the things she has to go through.

I hold tight to this promise…… Laila Ann was beautifully and wonderfully made.  And God’s works are wonderful, I know that full well.  (Psalm 139-14)

Keep us in your prayers please.  Monday February 29 is the big day.