A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Tuesday, April 12, 2016

Botox Update and Problems

We've been having some bladder and bowel issues lately.

Nick had his botox and deflux about 2 months ago. And we were really, really happy with it. For about 6 weeks. Then at Easter weekend I cathed Nick and got all brown urine. Completely brown.
My first thought was a bladder infection, so we started some d-mannose and pushed fluids. And it started clearing, but then he was leaking at home and school. He also started vomiting and had a couple of nights when he would get a really bad headache that would last a couple of minutes and go away.

So I knew that something was going on.

I wasn't really sure what it was. Was it bladder or bowel related?
Had the deflux failed (and that was the brown liquid) or was it a bladder infection. Was it constipation causing a bladder infection? Was it all of the above?

This past weekend Nick started getting constipated and his MACE was starting to leak (which only happens when he is backed up). And his bladder was leaking too, soaking through everything.  So we did what we usually do and gave him more Restoralax. When his MACE stoma started leaking really bad, and Nick was starting to not feel well I thought to clear  him out again with another flush.

So I started flushing small amounts at a time (so it was a mini flush, not a full one). But then nothing would come out. And as I sat in the bathroom with Nick I could see him getting sick. He started throwing up and complaining of a headache every time he put his head up. Then he got really tired and only wanted to sleep.
Of course my mind is flashing shunt! But I also know that the shunt drains in the belly. And if the belly is full (with poop or fluid that won't go through) then the shunt can't drain.

I kept pushing more fluid in and giving it some time (about 300 mL at about 50mL at a time) But after 3 hours I was reaching the end of my things-to-try-at-home and so I started packing my hospital bag and getting help so we could head to the hospital. My thought was that he had a blockage and my attempts at dislodging the blockage were not working. Of course it was the weekend, and all of my medical contacts were not there. But I did email his urology Nurse Practitioner.

Kyle and I sent Katheryn across the street to get my father to come and either drive us in, or stay with Katheryn. I collected the puke bucket and lots and lots of padding incase things started moving in the car.

But as soon as my father walked in the door, things in the bathroom started moving. And whatever blockage passed. Nick started feeling better, but was still really tired. He slept for about 3 hours and woke up feeling a lot better.

It was a pretty scary time for mommy. I didn't know if we should have gone to the hospital sooner, or even what hospital (I later talked to one of the pediatricians at my work and he wouldn't have been comfortable, especially with the shunt symptoms).

In the end we made the right decision, because everything did pass. But during the 3 hours when I could see Nick getting worse and worse I felt so helpless!

The shunt symptoms went away, so everything is draining from his shunt normally again. What I am hoping is that all of the original bladder symptoms will go away now that the bowel is better. But if they don't, I think we are going to have to say the botox is no longer working and start the Gelnique again. This is disappointing, because we really only got a good 6 weeks out of it (and I was hoping for 6 months).

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