+3 votes
Wyatt Anthony's Story
Description
Born with spina bifida, Arnold chiari malformation, hydrocephalus, and a seizure disorder. He also has a tracheotomy and a G-tube.

A little history, we found out our little boy would be born with Spina Bifidaon January 31, 2015. Hearing the news was completely heart breaking. I didn't know what to think or say. I had no questions. I was just in complete shock of the news. We had multiple ultrasounds, stress tests and stays in the hospital. We had a scheduled C-section date set for April 23rd. Needless to say I had to have an emergency one on April 9th when I had gone into labor. Wyatt made his appearance at 7:55 pm. Within the first 24 hours of life, he had his first surgery. This was the most nerve wracking part. I was not able to hold him or hardly touch him. We were thinking we would have this one surgery and go home in a couple weeks. We were wrong. He had many complications to discuss. On May 12th he was scheduled for his next surgery which was a shunt placement for his hydrocephalus. We thought we were in the clear. And once again we were wrong. We tried multiple times to get his breathing tube out and it was unsuccessful. Our only option was to do a tracheotomy which neither of us wanted. It was our only option. So on June 2nd he had his trach and g tube placed. After this was done he was on a ventilator and needed quite a bit of support. We were in a hospital about an hour away from home and me and his dad had to stay at the Ronald McDonald House. While I had two older girls it was very hard to leave them home with their grandparents. On June 25th he was transferred to a local hospital so we could be closer to home. It was a great feeling to be home with my girls every night but very hard to leave my boy everyday. Through the next couple of months he had good days and he had some bad days. There was multiple times where he would quit breathing and this kept him in the NICU even longer. After a few months of this I contacted yet another hospital about doing a decompression surgery for his chiari II malformation. This is a surgery that relieves the pressure off of the brain stem. It was a very high risk surgery and we needed on consult from a neurosurgeon. This surgeon was almost 3 hours away. He decided the Wyatt would benefit from the surgery so he was scheduled for this surgery for October 26th. Yet another transfer to a new hospital. On October 24th we were transferred. After the surgeon comparing multiple MRIs, it was decided that his shunt was not working the way it should have been. So we did a shunt revision surgery before the decompression. This worked wonders for Wyatt. We didn't expect it to make this much of a difference but it had. He no longer needed the decompression right now. A week after his surgery he was able to come completely of his oxygen during waking hours. He still needed it during naps and bed time. Before we discussed going back home, our previous hospital wouldn't take him back because he wasn't allowed back into the NICU. So our only option would be to bring him home. The Drs required us to have scheduled nurses to come in and help with Wyatt when we came home. In our area we couldn't find nurses at all. We finally convinced the doctors to let us bring him home without the scheduled nursing. Wyatt was finally discharged on January 14th 2016!!!

Through all of this we lost our car because we couldn't afford the payments no longer. And we also had to move back in with family. I am no longer able to work. I am now a stay at home mom for all 3 of my kids. We have many travel costs and Drs appts that we've had to attend. A few local but most of them are 3 hours away.
115 views Apr 8, 2016
anonymous
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anonymous
God Bless this precious boy and his family~   You have the best smile!
0 votes
Apr 19, 2016
Mim 14,740 points
Precious little one.***
0 votes
Apr 26, 2016