Thursday, March 4, 2010

Back to the NICU

Ok so its been a crazy few months and I am going to go back to December when we brought Dylan home...

After we arrived home it seemed as if Dylan was getting very sick. He was throwing up more and more each day (sometimes it was 20 times a day), very irratible, his eyes wouldnt focus and would shake and roll behind his head, and he was sleeping most of the day. On Janruary 12 the home nurse came to weigh him and get all his other measurments and when she took his head circumfrence it was off the charts for the norm. When he was born his head was in the 70th percentile and they did a head ultrasound to see if he had a build up of fluid (hydrocephalus) which came back negative. When we got discharged it was up to the 90th percentile which the doctors did not seem to be concerned about. Sal kept asking everyone why his head was so large and why all of a sudden his eyes were shaking but again it was brushed under the rug and they said he just has a big head and that his eyes were week bc of the md. So coming back to the last measurment we could no longer trust that this was normal. My mom for weeks and weeks after we left the hospital was begging me to take him to get a head ultrasound and I beleived the doctors so much that I ignored her advice. But with the last measurment I realized my mom was probably right all along...moms know best:) She told me that the morining before he was looking up at her and she felt that he was telling her to save him!!

We called the pediatrician and she advised we make an apt w a nuerologist and have them order a ct scan. The following morning I woke up with the worst feeling and was aboout to call the doctor when I recieved a call from her advising me to go in a few days to get one done on her order. I told her I couldnt wait any longer for an answer and Dylan was getting worse by the minute. She then told me to take him to the er and ask for a stat ct scan...

Well come to find out it was exactly what we thought...and he had hydrocephalus. They admitted him back into the NICU and schedualed a MRI for the following day. The results came back that he had Dandy Walker Syndrome which is not affiliated with myotonic dystrophy at all. poor baby boy hadnt been through enougph already that he was now faced with this condition as well! Dylan was going to need another surrgery>>>brain surgery... for a vp shunt to be placed in head which would drain the fluid down to his abdomen. They did not want to wait any longer without the surgery so it was scheduled for January 14th bc it was life threatening and he could have been having seizures all along, and he was having the worst migraines that whole time and we had no clue what was happening.

The surgery went smoothly, thank God!! And he was back home by the 17th.

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