Saturday, July 23, 2011

NICU -Part 5

Fast forward to MRI day week.

They finally decided at 37 or 38 weeks that Channing would have the MRI. This is what we were waiting for. This would give us a clear picture of her brain and a more accurate diagnosis and prognosis. I wanted to know so bad or I thought I did. I thought this whole time I wanted answers. I thought I wanted someone to tell me “yes, she’ll definitely be able to do this and not do that”. Then when this was on the horizon I got terrified. I didn’t want to know. I decided the “let’s wait and see” approach sounded a lot better but we went forward with the MRI.

She got the MRI on a Monday. We didn’t hear anything. So we waited. I was too nervous to ask. So we waited some more. Everyone in the NICU knew we were waiting for these results. Tuesday – nothing. Wednesday, Thursday – nothing. Finally on Friday after work I went to the NICU by myself. The Nurse and Nurse Practitioner were in her room and we were talking. I finally worked up the nerve to bring it up. I said “I want to preface this with, if either of you have knowledge of Channing’s MRI results I DON’T want to know anything without MG here but have her results come back yet?”.

This is where things start to get hazy for me.

The Nurse Practitioner told me “Ohh, I didn’t know she had the MRI yet. Let me check”. She went over to the computer and was reading. She said “Well look at this, I’m going to make your day”. A tiny glimmer of hope shot into my heart but I quickly killed it.

She said something else that gave me another tiny glimmer of hope but then I thought I misunderstood her so again shot down. She's saying words but they really aren't registering.

Finally she says “the results are NORMAL”. I still don't get it.

Who is normal? What is normal? What does normal mean?

The normal it says on the report can’t mean the same normal that I’m thinking of?! She says “Normal Brain!!”. So I say “No Holoprosencephaly?" She says "NO". I say "No brain defects?". She says "No, none".

She then reads to me the radiologists notes from the report. “Blah Blah Blah. . .Medical Jargon. . .Blah Blah Blah. Otherwise, NORMAL BRAIN”.

I couldn’t believe it. She kept repeating herself. I made her print the report and show me. I'm a visual person. Surely, they've made some mistake. I double checked the name on the report. It said Channing Gaylor. I asked if they read the correct MRI. She said “They don’t get many MRIs of babies down there. It’s hers”.

I'm about to pass out at this point. I still couldn't understand what was happening. My heart was about to burst.

Apparently, the Radiologist had another Radiologist read the MRI because it looked so different from the previous CT scan. So two radiologists agreed NORMAL BRAIN.

I wouldn’t say I’m relieved at this point. I’m totally not. I was in utter shock and disbelief. We never expected this. This wasn’t even in the realm of possibilities for Channing. The best case scenario was that she had a mild form of HPE and did not have the other fatal defect. The Nurse Practitioner had to talk me down because I was pretty upset. I told her I wanted to talk to the Pediatric Neurologist ASAP. She called him and scheduled an appointment for the next morning. I use the word appointment loosely. They told us to be there by 7am to wait for him. When you're the only game in town you show up when you want to.

I’m still thinking how is this even possible? The word miracle was immediately thrown out there. More on miracles later.

Three months in a living nightmare and I was waking up for the first time.

Word got around pretty quick to all the nurses and they started coming in and hugging me and crying with me. I remember Nurse A coming in. I told her “I’m waking up from this nightmare” and she said “Well good morning, Sunshine!”. I left the NICU to drive home to tell MG. I didn’t want to tell him on the phone.

I walked in to the house and I had the MRI results in my hand and I said “So I got the MRI results today”. I hand them to him with a “her brain is normal”. We stood there dazed. We were shocked, angry, relieved and grateful all at the same time. We wanted to hear it from the specialist though. If her brain was indeed normal how did this misdiagnosis happen? They were sure she had HPE. What makes them sure she didn’t now. We wanted answers, we wanted apologies.

We arrived at the NICU the next morning. Early. It was Saturday. We waited and waited. The Nurse Practitioner ended up calling the Neurologist after we’d been waiting for 3 hours. He says “Do they have to see me today?”. The nurse practitioner tells him “YES, they’ve been waiting for three months for these results. Get here and talk to them.”. We wait about another 2 hours and I finally saw him walk through the doors. My stomach was in knots. I was sure he was going to tell us there was some mistake and the Radiologists are idiots and Channing still has these horrible problems.

I don’t really remember the conversation with him much. I was pretty guarded. I think I just kept saying “so she doesn’t have HPE? Her brain is normal. You agree with the Radiologists? BRAIN = NORMAL!!”. I don’t remember how many times I asked this but it was a lot. He said he agreed with the Radiologists. He didn't really have a good explanation. The only thing he could come up with is that the CT scan looked slightly tilted and maybe that was the reason for the difference. I still wasn’t 100% convinced but I felt better. There were no apologies, no profusions of guilt for putting us through this for the past 3 months.

Part 6 next week. . .and then it sucked again.

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