Alexis was brought to Dayton Children's Hospital on July 8th via ambulance for a violent seizure. The entire time the paramedics, the ER staff tried to assure me that this was a common childhood thing that can happen and its probably a simple electrolyte issue. They kept asking me over and over again if she had been sick. The nurse in me and the mom in me knew that she didn’t have any signs of being ill that would cause a seizure, blood chemistry balance issues nor did she seemed to have any out of balance electrolytes. However, deep down I was hoping this was what the problem was for sure!
I have to tell you all I really advocated for my child. That is the whole point of this post was to show that I knew what I was talking about and I was not about to be dismissed as an overly worried mother. I wanted to be seen as a well educated and caring person who wanted to take no chances for my daughter when it came to her health.
They had a horrible time trying to access a vein for the blood draw. 6 attempts and finally after I kept demanding they call a vascular specialist did they finally agree to send them for the blood draw/IV access. They got it on the first try. To the doctors surprise the blood work came back all within normal ranges. This is where the medical professionals tried to start the process to send us home. I actually was angry. They did minimal blood work test and wanted to send us home. I told them I didn’t feel comfortable going home and following up with neurology whenever they can get us in.
So after I asked to speak with the head ER doctor and explained what happened and what I had saw He actually agreed that she should be evaluated further. I told them I thought she needed some kind of head scan and possible 24-48hr e.e.g. I knew the 45 minute ones really don’t show much and was worried that it wouldn’t capture a true picture of what was going on in her head.
They preformed a CT scan and a 45 minute E.E.G. Both came back normal. Again they tried to talk to us to send us home and said this was probably a one time thing and we shouldn’t worry. I was not comforted by this. I again explained the concern about how long it would take to get in with neurology to order more conclusive tests and that I thought it was best she just get it done now. I was worried we would be home with no medication and limited knowledge of what is going on with her and she begin to have more seizures.
We spent our first night in the almost home unit. Per the neurology clinic rotation that saw her in the morning agreed that she needed to have an EMU or 24 hour E.E.G. Our second day/night she was hooked up to the E.E.G. She had a few small episodes of starring/not responding that they captured on the EMU. The next morning we found out that most of her seizure like activity was in REM sleep on the right side. They wanted to discharge us and have us come back and do an MRI with outpatient radiology.
I was upset. Well, very upset. I just got told that they saw seizure like activity when I didn’t even know what to do. However, I was not about to be sent home when we already had IV access and that they were trying to get her to the next MRI appointment available next week. I could not wrap my head around the idea that they wanted to put her through the torture of I.V access again and again not sending us home on any medication to control her seizure activity!
I made a few phone calls, talked to the nurses about possibly being transferred to another children’s hospital and it was until I made a call to our insurance company and explained what was going on that they informed me that they had a spot open that evening to do the MRI.
Alexis had her first MRI around 5pm using IV sedation. She did great. Although the wake up was hard on her. The next late afternoon we found out they saw something on the MRI but don’t know what it was but appears to be a high flow vascular issue. They ordered an emergency MRIA as it was now (Saturday) and they don’t do them on Saturday unless there is an emergency. This MRI took twice as long. We were told that the radiologist reading the MRI stated to do an MRIV as well as they wanted to go over the concerned area. They also started her on some seizure medication that night.
Sunday was pure torture for us. We waited and waited for the results. The doctors kept telling us that they are reviewing it and still determining the issue. We were told that we were going to be discharged that whatever the issue is she is stable to go home. We were given seizure medication and told to keep our phone on us.
Monday afternoon we got the call we had been waiting for. We were told that it was a high flow vascular abnormality and that she needed to be evaluated by a neurosurgeon. I was told they would be calling us that day. The following day we were seeing a local Dayton Neurosurgeon.
All in all we did recieve good care from the staff at Dayton Children’s hospital. It just took knowing what to say, the right questions to ask and making sure we were not just dismissed or ignored for the proper care. Our nurses were very good and they did their best to help advocate for our precious Alexis. I am very grateful that God helped guide me to question, research and partner with these medical professionals. This mindset is what I currently focus on to this day!
I have to tell you all I really advocated for my child. That is the whole point of this post was to show that I knew what I was talking about and I was not about to be dismissed as an overly worried mother. I wanted to be seen as a well educated and caring person who wanted to take no chances for my daughter when it came to her health.
They had a horrible time trying to access a vein for the blood draw. 6 attempts and finally after I kept demanding they call a vascular specialist did they finally agree to send them for the blood draw/IV access. They got it on the first try. To the doctors surprise the blood work came back all within normal ranges. This is where the medical professionals tried to start the process to send us home. I actually was angry. They did minimal blood work test and wanted to send us home. I told them I didn’t feel comfortable going home and following up with neurology whenever they can get us in.
So after I asked to speak with the head ER doctor and explained what happened and what I had saw He actually agreed that she should be evaluated further. I told them I thought she needed some kind of head scan and possible 24-48hr e.e.g. I knew the 45 minute ones really don’t show much and was worried that it wouldn’t capture a true picture of what was going on in her head.
They preformed a CT scan and a 45 minute E.E.G. Both came back normal. Again they tried to talk to us to send us home and said this was probably a one time thing and we shouldn’t worry. I was not comforted by this. I again explained the concern about how long it would take to get in with neurology to order more conclusive tests and that I thought it was best she just get it done now. I was worried we would be home with no medication and limited knowledge of what is going on with her and she begin to have more seizures.
We spent our first night in the almost home unit. Per the neurology clinic rotation that saw her in the morning agreed that she needed to have an EMU or 24 hour E.E.G. Our second day/night she was hooked up to the E.E.G. She had a few small episodes of starring/not responding that they captured on the EMU. The next morning we found out that most of her seizure like activity was in REM sleep on the right side. They wanted to discharge us and have us come back and do an MRI with outpatient radiology.
I was upset. Well, very upset. I just got told that they saw seizure like activity when I didn’t even know what to do. However, I was not about to be sent home when we already had IV access and that they were trying to get her to the next MRI appointment available next week. I could not wrap my head around the idea that they wanted to put her through the torture of I.V access again and again not sending us home on any medication to control her seizure activity!
I made a few phone calls, talked to the nurses about possibly being transferred to another children’s hospital and it was until I made a call to our insurance company and explained what was going on that they informed me that they had a spot open that evening to do the MRI.
Alexis had her first MRI around 5pm using IV sedation. She did great. Although the wake up was hard on her. The next late afternoon we found out they saw something on the MRI but don’t know what it was but appears to be a high flow vascular issue. They ordered an emergency MRIA as it was now (Saturday) and they don’t do them on Saturday unless there is an emergency. This MRI took twice as long. We were told that the radiologist reading the MRI stated to do an MRIV as well as they wanted to go over the concerned area. They also started her on some seizure medication that night.
Sunday was pure torture for us. We waited and waited for the results. The doctors kept telling us that they are reviewing it and still determining the issue. We were told that we were going to be discharged that whatever the issue is she is stable to go home. We were given seizure medication and told to keep our phone on us.
Monday afternoon we got the call we had been waiting for. We were told that it was a high flow vascular abnormality and that she needed to be evaluated by a neurosurgeon. I was told they would be calling us that day. The following day we were seeing a local Dayton Neurosurgeon.
All in all we did recieve good care from the staff at Dayton Children’s hospital. It just took knowing what to say, the right questions to ask and making sure we were not just dismissed or ignored for the proper care. Our nurses were very good and they did their best to help advocate for our precious Alexis. I am very grateful that God helped guide me to question, research and partner with these medical professionals. This mindset is what I currently focus on to this day!