Maskus Miracles: Mostly Calm

Sunday, February 20, 2011

Mostly Calm

Things around here have been fairly uneventful and mostly calm since coming home from the hospital 2 weeks ago, except one false alarm. On Thursday I got a call from daycare saying that when they cathed him a lot of blood came out of the catheter. I immediately assumed it was a bad UTI, so I called the doctor for an appointment that afternoon. When I got to daycare to observe for myself what they had gotten out of his cath, it was an alarming amount of blood, I thought it seemed a bit too much to be a UTI. When we got to the doctor they cathed him again to try to send a urine sample to screen for a UTI, but they also just got blood. They sent us for blood work to assure there was no internal bleeding somewhere and the pediatrician called our Urologist. The blood test came back normal and they were unable to detect anything in the urine sample because it was pure blood. . The doctor came back to us and told us they thought maybe the catheter that had been used had an uncut sharp edge that made a cut somewhere inside his bladder, more than likely near his prostate because that is a very vascular area. He had a Foley catheter put in so that we would not have to continue inserting catheters and aggravating the injured area. He gets that taken out tomorrow.

While waiting for all this information I got on Facebook to the Spina Bifida Group and asked if anyone had ever experienced this. As always, my fellow SB family was right there with reassuring information and prayers. Other people had gone through this and it helped calm my nerves that nothing serious was going on.

Other than this happening he seems to be doing really well. We had a follow up with the GI doctor last Monday and he was only down 1 ounce since we left the hospital. This is the least amount of weight he has lost between visits for a while. He is still not eating the way he was before the hospitalization, but he is getting there.

Tomorrow is the start of a new phase for Evan as he starts Speech Therapy. As of now, he babbles and the only resemblance of a word that he can say is "dada" although I'm not sure he really understands that it has meaning. I am so excited for him to start talking and being able to communicate with us. I am so looking forward to hearing the sweet word "mama" from him.

2 comments:

JamieFebruary 20, 2011 at 2:00 PM
I'm so glad it was nothing major!
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JillFebruary 21, 2011 at 6:53 PM
So scary, but such a relief that it's minor... well, in the grand scheme of things anyway! Glad to hear that he continues to do well.
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Welcome To Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.