Spine surgery

Oh, where to start?!?!?

For as long as we have been able to see Caroline's back, we noticed that she had a dimple about an inch above her . . . well, booty crack, and every once in a while, a sore would develop in the dimple that would look pretty infected.  We were able to manage it with neosporin and with all of her other problems, we never brought it up to the doctor.  Finally, once everything else was taken care of, I decided to bring it up.

Immediately, the doctor was concerned and referred us to a neurologist in Austin.  Caroline's pediatrician was pretty certain that it was a sinus tract and after a MRI in Austin the first week of June, it was confirmed that she had a tethered cord along with other issues.  Basically, the spinal cord normally hangs freely in the canal and moves as we grow but with a tethered cord, it is literally tethered taut at the end.  As with all of her surgeries, we asked, "Does she really have to have this repaired or can we just live with it like this?"  The doctor told us that if it went without being repaired, Caroline would eventually not be able to walk.

So, Caroline had surgery on Monday to repair this problem.  It was actually a pretty quick surgery; I think it only took about an hour and a half.  The surgeon said it went as good as could be expected, that the tract went all the way to the back of her spine and that he had to manipulate her spine more than he anticipated. Overall, he was pleased.

She recovered pretty quickly, only needed pain medication for the first 36 hours or so and was trying to crawl around her bed within the first 2 days.  We thought she would have a lot of pain in her legs but she showed no signs of that.  The problems came when it was time for her to pee on her own.

As I'm sure you know, anyone coming off of anesthesia and being catheterized often has urinary retention - usually until the meds are out of their system.  This is definitely the case for Caroline and me.  The problem was, the entire time, I was getting conflicting information from the hospital staff.  Caroline's surgeon went on vacation the day after her surgery so all week, we were dealing with his partner and two nurse practitioners.   The doctor and one of the nurse practitioners maintained that Caroline's urinary retention was due to the medications in her system, it was very uncommon for this to be caused by the surgery and should clear up as soon as the meds were out of her system.  The second nurse practitioner said that this was VERY common in patients that had this surgery and they often go home with "in-and-out" cathing.  Because the 1st story was true to what I knew (and you would think you should trust a doctor) we chose to believe the doctor and the 1st nurse practitioner.

After a reasonable about of time allowing the meds to be out of Caroline's system and nothing changing, the second nurse practitioner talked more to me about the surgery.  She said that with a tethered cord release, the surgeon literally just cuts whatever is tethering the cord, the cord bounces back into place, and the nerves hanging off the base of the spine are often aggravated causing them to stop working (temporarily or permanently).   Any function below the point of the tethering could then be effected - peep, poop, leg function, etc.  She said that it usually takes a couple weeks for the nerves to relax back to their normal state.

I saw the doctor again after this and he maintained that this was very uncommon.

After 48 horrible hours of in-and-out cathing, bladder scanning to see how much urine was in her bladder (Tuesday night they came in every hour, from midnight to 4 am to scan her bladder (later found out they shouldn't be doing that)), and a lot of tears (from Caroline and me) they decided to put a Foley catheter in - basically a long term catheter that continuously drains the bladder with the purpose of giving her bladder a break.

Side note:  I can't explain to you how horrible the in-and-out cathing was.  Dell is a learning hospital and it was clear that most of the people cathing her had either never done it before or hadn't done it in a while.  One person actually put it in her vagina!  There were several caths that she was literally foaming at the mouth and convulsing in pain.  During one of them, she had a bottle in her hand and stuck the end of it in her mouth and bit down as hard as she could.  It was all I could do not to grab her up and run out of the hospital.  After one of the really bad ones, the nurse asked me if I wanted Caroline to have some Tylenol.  My response was a tearful, "All I want is my daughter to pee!  Is there anyway you can help with that?!?"

Thursday morning (after the night of the foley), the second nurse practitioner (who said urinary retention is very common with this procedure) came in and said she could not believe the decision was made to put the foley in again and that this was a huge step backward.  Later that day, the doctor came in with this same nurse practitioner and said that they were going to foley her again that night and get a consult from urology to make a plan of action.  I won't bore you with all the details but we didn't have a pleasant conversation.  The lack of having a common vision and plan of action was appalling to me.  Especially when a toddler with one kidney is having urine retention problems.  The end result of our conversation was the nurse practitioner got in touch with someone from urology that night, they agreed with her that we should not foley her anymore, they agreed with her that this was common and we would likely go home doing "in-and-out" cathing.

So, Friday morning, the nurse practitioner from urology came to visit us.  She described a, hopefully worst case, scenario of what the next few weeks or months could look like for us.  She said that it could take Caroline several months to get back to normal and that some patients with this procedure never go back to normal.  The urology doctor said that 33% of patients have better function after this type of surgery, 33% have the same function (as before the surgery), and 33% have worse function.  We are prayerful that she is in the top 67%.  They also did an ultrasound of her good kidney and bladder and were very pleased with what they saw.

To prepare us for going home, Jesse cathed her Thursday night and I cathed her twice on Friday.  I had every intention not to learn how to do it but they wouldn't let us leave unless I showed proficiency so . . . there you go!   We were finally discharged Friday afternoon and have been home for about 3 hours.  We did one cath so far at home and we survived it :)!

Other than the urine retention, Caroline is doing great.  She is crawling all over the house, is in a great mood (when she isn't being cathed), and seems very comfortable.  We are very thankful that we aren't dealing with pain issues on top of the other issues.

We are prayerful that God will prepare us for whatever lies ahead of us.  Of course, we have a preference but will do whatever we are meant to do!

We appreciate your prayers too!