The scary part is the unknown…


Today is January 30th,

Yesterday, was interesting to say the very least. I know that health professionals are just doing their jobs, but honestly all of my good sense went out the window when the unknown was introduced. Our day was planned out… we would go to the VA and get some appointments taken care of, including an eye appointment for my husband. All we needed was an eye exam, pick out some new glasses, get some x-rays, and a new ID card. The plan was to go hang out with Grandma W afterwards, go home, and do homework / relax.

Little did we know that swelling in both optic nerves would send us straight to the ER to waste the second half of our day ending with absolutely no answers. The VA approved us to go based of the consultation of an optometrist, ophthalmologist, and a physician. We decided that it would be better to be safe than sorry.

The optometrist was amazing. He explained everything from what he saw, what it could mean, and why he wanted us to go to the ER. He showed us the scans, and explained how the nerves and eyes should be. He was calm. He gave us all the paper work we would need, and made sure to send a heads up to the ER saying we were coming.

First of all we were lost because we don’t normally go to any GR hospitals, and the only reason we were down there was for Bri’s appointments at the VA clinic. We live on the west side of Michigan. When we got there the receptionist said that they (the VA) never sent anything. I could also sense that she did not believe us. Bri’s eyes were dilated due to the drops they put in your eyes for an eye exam. I know they get drunk people , but Bri wasn’t slurring his words etc. I handed them the paper work, and they asked why we were here. We explained why and it seemed like they either didn’t think we were telling the truth or didn’t understand why the VA sent us. We had to become insistent that the VA sent us there before they would triage Bri. We would probably tell our story at least 3-5 times to multiple people over the next 3-4 hours. We ended up with a CT that came back clean. I am not sure what the ultrasound showed because the doctor didn’t even explain it to me even though I asked.

We were exhausted…tired of explaining why we were there. … Eventually they said they would not do the spinal tap because his life was not in danger. The paradox is that it would more than likely tell us what was going on. Since, he can’t get an MRI due to shrapnel … they decided to finally let us go home. We spent most of the time sitting and waiting. We had two nice people who took Brian to CT. The first nurse J was very nice, and he listened well. The second nurse who was very perky and outgoing was also great. She listened to us , validated our feelings, and explained what they would like us to do the next day. We did not go back to met with the Neurologist because we have to get VA approval. We are still waiting for them to call back.

They wanted us to come back in the morning to see a neurologist. They (ER staff) didn’t seem to understand that we live an hour and fifteen minutes away. That costs a lot of money in gas and we just couldn’t do it again this week. They didn’t seem to want to let us come in on Friday. So, we decided to hell with it… we will see if the VA has a neurologist or if they have a different plan for us.

After we got in the car…frustrated, wet from the rain, and still scared. I realized …why didn’t they get the scans from the VA? Do they have a neurologist on staff or call? I don’t know??? Why didn’t I ask!!? People say oh you need to advocate.. its so easy for them to say…but when you are upset you cant think. I have been in grad school for OT, and I know most of the screens they use. I could see what they were doing… I knew how to administer them… and some of the things I could remember what muscle or nerve was associated with it… but I could not remember why.. what did it mean… My mind was blank. I hadn’t eaten since that morning. By the end of the ER waiting fest we both had migraines, we were both agitated, and we just wanted to leave. I know he didn’t have some penetrating head wound….. but black outs, increased loss of balance  over the previous two months, and swollen optic nerves are still something that gives you reason to pause.

I have learned many things …

A. Prepare questions with the referring doctor before you get there other wise you will feel overwhelmed.

B. Make them stop and explain things and then write it down.

C. Bring a book to the VA you never know where you will end up

D. Tell them to repeat it when your head hurts so much that everything they just said …. never registered.

E. Don’t pace…. apparently it makes me dizzy and more anxious

F. Always pack snacks and juice boxes. ( I had trail mix ….but that was just the snack for the VA part)

To health care professionals…

I know you have to ask our story but come on! The only one that acknowledged that she knew what was going on, but would like to hear it in our words was the Perky nurse. I understand you are busy… but it is really irritating to state it over …and over and over again. Read the darn chart… then ask more probing questions.

The people who were great were the two people who transported Bri to CT, and our two nurses (1st and 2nd shift) We greatly appreciate their effort, how well they did their jobs, while also comforting us.

I am hopeful that the VA will have a plan so we can get some answers. Right now the unknown…. is scary.

Source of pictures: Pinterest and or a search engine. I would explain the anatomy of the eye, but I have another migraine.

Anatomy of the eye

http://www.stlukeseye.com/popups/opticnerve.htm

Today is January 31st,

Today the optometrist got in touch with us, and we are getting a referral to a VA neurologist in Ann Arbor. Now we are waiting to get a call from the Neurologist, and to hear back from his primary care physician. Thankfully , my school campus is closed today because its snowing like crazy here. We have 3-5 inches of snow already and it is showing no signs of slowing down.

I am still worried but I am glad that we are on our way to finding some answers.

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