Born February 3rd, 2001
I am a mother of a special little boy.(of course all these little ones are special for what they have been through).
Brodey was born on Feburary 3 2001. He seemed to healthy the only one of my four children that was full term and a healthy prgnancy. He was sent home from the hospital an a apena moniter because of the fact his older brother had apnea ( the cause of S.I.D.S).
At 10 day old he started to set off the high heart rate alarm. I called the doctor she said that sometime that could happen when we hold the baby that the moniter would pick up our heart beat as well. So as any mother I decided to test that thoery. I laid him down and started to write down when it would go off and were he was at that time. Well, we were not holding him when it started to go off so I called again. I think the doctor was tired of hearing from me and said ok take the monitor to the medical shop they will down load and we will see if they are true alarms. I did… the tech look at me and said that I need to have my baby checked his heart rate was at times hitting 265 beats per min. I call the Peditrician and she admittly made me take him to Akron childrens hsopital. We meet with a great heart doctor. DR Jacobstein. He put another monitor on Brodey to try and catch and see what was going on.Dr Jacobstein also did a EKG but it did not show anything. He sent us on our way cuz of course well we were in the doctors office brodeys heart was fine. We no sooner got on the elevator and off went both alarms but only for a second sos we passed it off like nothing. By the time we drove home The alarms did not stop. We turned around and rushed back to the hospital by this time Brodey was in heart failure. With medication and a long hospital stay we thought everthing was ok. little did we know…
Brodey was sent home on the heart medication and monitor. At 12months he start with more problems. He was admitted to akron children again. He was not alert and we could not understand why he would not lift his head up. A student doctor was in and she insisted on a CAT scan the fellow Doc said no but she did it any way she said something just does not seem right. (I thank her till this day tha she did). All the doctors wanted to rule it out as a bad case of the flu but she was thinking spinal menengitits. She was just as suprised as we were when they found the VGM. After the CT. Me and my family were waiting in his room for the results but not expecting that . The next morning the head of the neurosurgery dept came in to let us know that they do not have the technology or the experence to help some on with this type of malformation and the closest hospital was in Buffalo N.Y.
So off we went. Only to find out when we got that they did some blood work on Brodey that he had a blood disorder as well. Lupus anticoagulant were the blood clots in the blood stream. We were sent back home to deal with problem first.He was put ona aspirin a day. At 14 months Brodey woke me up with a scream I have never heard a baby do before. Nothing I did calmed him and the first thing that camre to my mind was he was having a bleed. I rushed him to the hospital told them about his VGM and how he was screaming. They did a CAT scan said everything was fine and sent me home. Brodey by this time was not responding at all. I called his doctoer in buffallo and told them they called the hospital and had them reread the CAT scan. About 30min latter the phone rang it was the hospital radiologist he apologized to me and said I need to get Brodey back upto hte hospital there was a mistake and the brodey GVM was Bleeding. They admitted him to The PICU and in about 4hours was life flighted to buffallo to see the Doctors in N.Y. He had his first ambolization done. Everthing went great the doctor said they were able to get a few of the feeders but the malformation was so exstensive that it would need multiple procedures. About every 6to 8 months . So at 19 they called to schedule another one. Once again everthing did great a short hospital stay and they sent on our way. Althought when we got home I noticed after 7days that Brodey was not useing his left side as well as normal(since he seemed to do everthing left handed) I called up to N.Y. the told me to get him to Akron Children they called the neurosurgent there and that they want a MRI done. By the time that doctor came to see me son he was not moving his left leg. They did the MRI said it did not show anything and it was just swelling from the ambolization.They admitted him and put him on IV steriods. As a mother you know when some thing just is not correct. So once again I called Buffallo told them that now Brodey has tremmors and cant walk or feed him self he was starting to drewl on himself. with in about 10 min another doctor at Akron Children came in to elvaluate him. Brodeys eye were not dilating. The doctor looked at me and asked if I hade the number for Buffallo. (of course I did) He called up there let them know what was goin on with in 1hour we were put on a jet and flown to Buffallo once again were I came to find out Brodey was having a stroke.I do give credit to the second doctor At Akron Childrens he admited he and NO Idea what was going on and kept the doctors in Buffalo on the phone till my son was safely out of there.
After about a year of PT and OT Brodey is doing great.alittle behind in speach but other then that doing great. Still do not know if his eye sight is damaged the doctor still say he is still to young to tell but we are keeping on that. After those ambolizations I was an pin and needles for the next ones to come. he has had 6 so far and all went great up till now
We just went for his 7th ambolizationon 8-16-05 and expected it ot go as well as the last good ones. When the doctor came out and said that they were not able to get any more of the VGM do to the fact that what the can not reach it and it was to dangerous. It would leave him paralyzed or worse and that They wanted to meet with the board of neurosurgent and see what the best option is for Brodey.
This were I need help they gave me three options that he were pushing around
1) Sit on it and let him grow up alittle ?
2) Gamma knife?
3) Try and get to VGM through the vein side ?
I have been on this computer since we got back to see if anyone else had these options and to get some Ideas on what would be that best.I am supposed to here from the doctors today and here if they ahd made up there mind up on what the best option is for my baby.If any body has any information and would like to talk Please E-mail me at firstname.lastname@example.org I sure would like to speak with you.
Feeling Helpless Natalie