The surgery was on Friday and the following Tuesday we were able to take her home. I kind of thought that was too soon but they assured me she was ok. And she sure seemed to be. You could tell that she was already much better than she had been when we brought her in. About ten days later we (mom and I) took her back to get her stictches out. As we were driving to St Louis, Arielle began getting fussy again and we couldn't calm her. We took her to her doctor early to see if he could get her in and see what was going on. He looked her over for possible signs of an infection. And didn't see any of the usual signs but could tell she was distressed. So he decided since her regular pediatrician was so far away, that she should see the doctor that had admitted her to PICU. So we were off to see this doctor. She checked her out and decided that it would be best to admit her and run some tests to see what was going on. She was afraid this would upset me (she was a very caring doctor, I am forever grateful that she was there), but in actuality it relieved me. I knew something was wrong and they were going to do something to help her. After doing a series of tests one of which was an ultrasound, they discovered that she did have an infection. Her neurosurgeon also did a shunt tap, the liquid was suppose to be clear, it was DARK RED.
This time around I just about moved into St John's. She was there for a little over three weeks. Arielle was in a room that was just outside the PICU, but still connected to it. So she mostly had the PICU nurses taking care of her. Funny as it sounds, they fought over which one would get her for the day. It was from one of these nurses that I learned that we were lucky that it wasn't meningitis. I couldn't understand how I was lucky, but then I learned that a lot of babies die from meningitis. The nurses kept bragging on how pretty she was. And every once in awhile someone would peek in and say is this that pretty baby that I've heard so much about?
She was on some pretty heavy duty antibiotics so they had to check her blood levels often ( I forgot exactly how often). But I know they had to do this to make sure that she was getting enough, but not too much because it could cause liver damage if she received too much. She had an external shunt at this point. They ran the tube that was in her stomache out the hole(from her scar) and put a bag on it to drain. This liquid (same as in her shunt tap) was suppose to be clear, it was blood red. As the days went on you could see that the liquid was getting more and more clear. The color was getting lighter and lighter..it went to a yellow then completely clear.
After a little over two weeks of treating this infection, she was ready for surgery again. Yes you guessed it. She was getting the old shunt out and a new one put in. The new one they put in on the opposite side because the risk of infection would be less since the former shunt track could be infected. She sailed through this surgery with flying colors. And was ready to come home within the week. Which once again seemed fast even though Arielle and I had lived in that hospital for almost a month.
Let's go on....
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Hydrocephalus Guest Book
in this book you will find people with varied stories on hydrocephalus. It is very informative and has helped me in a lot of ways.
© Trudy November 9, 1997
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