Thursday, March 18, 2010
Dandy Walker/ Hydrocephalus Awareness month
Governor Purdue has approved our request to make May 2010 Dandy Walker/ Hydrocephalus Awareness month!!! For more information on Dandy Walker visit www.dandy-walker.org.
ER
On Friday, March 12, the neurosurgeon's nurse called and I told her all of Tommy's symptoms and she told me that she wanted us to bring his scans and him and check into the ER at Scottish Rite. She wanted us to do this just in case he need a shunt right away. She also told us that our neurosurgeon was out of town and that we would see one of his partners. We were very worried about that because we had never met him or heard anything about him.
Once we checked into the ER they put us in a room to wait for the surgeon. They told us not to feed Tommy and that the doctor was in surgery and that it could be an hour or it could be five hours. Poor Tommy was so hungry so we kept having to put sugar water on his paci.
Once the surgeon came in he told us that it was Dandy Walker Malformation (we were told it was the variant). He also said that he did not have Hydrocephalus right now but could develop it. He also told us that there was fluid but that it wasn't causing pressure on his brain. Tommy does have a corpus collosum but it is thin(not sure how having a thin one will affect him as opposed to a normal sized one). After he left the room we were more confused than ever. We felt like we were back at square one. After attempting to answer our questions he told us that we could leave and to make an appointment with our neurosurgeon in a couple of weeks.
I have talked to our doctors nurse and she wants us to come in a couple of weeks and have a cranial ultrasound and then meet with his surgeon to discuss what the next plan is. In the meantime we have to watch for signs that he is developing Hydrocephalus. If we notice anything we have to take him to Scottish Rite to be assessed.
Thank you so much for all of the support and prayers. Baby Tommy is so strong and I truly believe it is because of all of the prayers. He is such a gift from God!!!
Once we checked into the ER they put us in a room to wait for the surgeon. They told us not to feed Tommy and that the doctor was in surgery and that it could be an hour or it could be five hours. Poor Tommy was so hungry so we kept having to put sugar water on his paci.
Once the surgeon came in he told us that it was Dandy Walker Malformation (we were told it was the variant). He also said that he did not have Hydrocephalus right now but could develop it. He also told us that there was fluid but that it wasn't causing pressure on his brain. Tommy does have a corpus collosum but it is thin(not sure how having a thin one will affect him as opposed to a normal sized one). After he left the room we were more confused than ever. We felt like we were back at square one. After attempting to answer our questions he told us that we could leave and to make an appointment with our neurosurgeon in a couple of weeks.
I have talked to our doctors nurse and she wants us to come in a couple of weeks and have a cranial ultrasound and then meet with his surgeon to discuss what the next plan is. In the meantime we have to watch for signs that he is developing Hydrocephalus. If we notice anything we have to take him to Scottish Rite to be assessed.
Thank you so much for all of the support and prayers. Baby Tommy is so strong and I truly believe it is because of all of the prayers. He is such a gift from God!!!
MRI
On March 9 I took Tommy to his pediatrician because he kept shaking his head no. His doctor was not sure why he was doing that so he ordered an MRI. So that Thursday morning we went to the Children's Hospital to get the scan done. We were nervous wrecks!! After we got checked in they put an IV in. Baby Tommy didn't cry at all! He did much better than his daddy and I. We then took him down to radiology. This seemed to be the longest walk because we didn't know what to expect. Once we got down there they put him on the table and Tommy and I got to stand next to him and hold his hands while they put him to sleep. That was the saddest thing I have ever seen. No child should have to go through any of this. He was in the machine for 25 minutes. Once they were done we went to the table to get him and he woke up before we could even pick him up.
After the scan was over we went back to our room to try and feed him. We had to stay for 3 hours after the scan was done so they could monitor his vitals. While we were waiting to leave his pediatrician called and told us that the ventricles have grown since the CT and that there is more fluid in the back of his head. So needless to say we were heartbroken once again. He then told us that our neurosurgeon would call us later that day or the next morning. So we went home and waited for someone to call so we would know our next step.
After the scan was over we went back to our room to try and feed him. We had to stay for 3 hours after the scan was done so they could monitor his vitals. While we were waiting to leave his pediatrician called and told us that the ventricles have grown since the CT and that there is more fluid in the back of his head. So needless to say we were heartbroken once again. He then told us that our neurosurgeon would call us later that day or the next morning. So we went home and waited for someone to call so we would know our next step.
Subscribe to:
Posts (Atom)
