Thursday, September 13, 2012

Our Story Continues...Friday the 13th

So here we go again. Hailey needs to fast before the MRI so that means that she'll need IV fluids, that means an IV and that means I'm freaking out. Remember the fiasco last time we stuck this kid and all her vains blowing and then her arm getting tied up like Fort Knox? Well here we go again. This time was better only took two tries and she's wrapped up and ready to go. Hailey sleeps through the night and I am there alone in a chair wondering how we ended up here again. Things were going so good. What's the MRI going to say? What did the MRI in December say, and if it wasn't good how come no one told us? There is no way I can sleep and Josh had to go home, but will be back in the morning. It was a pretty long night.
 
Hailey's MRI is in the late afternoon and they will only do her head. At least I know it's only going to be 45 minutes or so. The transport team comes up and it's time for them to take Hailey. We walk down to the MRI room with her but can't go past the doors. When they take her back she's crying for us and she's scared and I just have to hold it together for a few more seconds then when she can't see me I can break down. They lay her down on the table where she will enter the MRI machine and give her the propofol. It's eerily silent, she's asleep now. We just sit in the waiting room. I can't eat, I didn't sleep, I hadn't even used the bathroom since I've been there. We just wait. 
Her 45 minutes are over and we can see her now. They will wheel her in a bed back to a recovery room where they will monitor her and we follow. They tell us the scans will be ready in time for the neurologist to see them when he comes in at 5:00.
Once 5:00 rolls around my stomach is in KNOTS! What is he going to say, what's going on in her head, why is this happening? When the Dr. finally does come in he asks if we can leave Hailey with a volunteer and go with him. He wants to show us something. This can't be good. We leave Hailey and go with him. He has her scans up on the screen. He's explaining to us what White Matter of the Brain is and what Myelin is. He mentions ADEM again, he mentions Multiple Sclerosis, and he mentions Leukodystrophy. If anything you hope for ADEM, then MS, but you don't want that L word. He had suggested that Hailey have an IVIG treatment intravenous immunoglobulin. If she has ADEM or even MS then we should see a significant improvement in a short amount of time. He wants to do 5 treatments, 1 every 24 hours. After the 5 days if we do NOT see this significant improvement then he will want to draw blood for 6 most commonly known Leukodystrophies. He tells me that this MRI is a picture that's worth a 1,000 words. All I see is my baby's brain on the screen.
I don't know if I took a breath the whole time this was happening and he was talking. I felt my chest tighten. Could you imagine hoping for one life long disease over another if those were the 3 you had to pick from? He wanted to start the IVIG tonight and check back with us tomorrow. I was so curious about the IVIG. 
The immunoglobulin G is extracted from over 1000 blood donors to commonly make 1 dose. We were going to have 5 doses. 5000 Blood donors are going to try and help Hailey. The nurse that will be administering the IVIG said that it's a 6 hour process for the transfusion. First they do a pre-teratment. It consists of giving Hailey tylenol to prevent a fever spike, then some benydryl to prevent an allergic reaction, then some solumedrol which is an anti-inflamatory. Each given at different times until complete. Then comes the IVIG. The nurse carries it in like it's so delicate. I am guessing it's SUPER expensive...I guess right.
The IVIG can't be given all at once. You get a little, the nurse doesn't leave your side, you get your blood pressure checked, your temperature checked and your heart rate monitored. Then you get a little more, monitored again and so on and so forth until the last couple hours of it. The nurse then lets it do what it does and will come back to put an IV bag on. It's really interesting to read about IVIG and the many uses known and the experimental uses as well. Hailey was knocked out by that benydryl but woke up because her bed was soaked in sweat and urine and we had to change her sheets. It was time to go back to bed so I reached through her crib and held her hand until she fell asleep. 
Saturday morning Josh comes and lets me know he asked his mom to come down and she's going to help. She'll be here Monday. Saturday we are going to spend the day in the playroom and taking rides in the wagon around the nurses station. We try and attempt for Hailey to bare weight on her legs but she can't so we don't push her. Doctors come and go and nurses change shifts and we are playing a waiting game. 
Saturday night another IVIG. Another Pre-treatment. Another 6 hours of watching Hailey sleep. Josh stays the whole time too. Sunday will be a quiet day. Family knows we are here, a few friends too. My friend Christina comes to visit Hailey and brings some fun things for Hailey to play with. On a side note props to Crayola for Color Wonder books and markers! Hailey loves these! It was ideal for her since she didn't have good control over her arms and hands that she didn't get marker anywhere but the paper. I need to stock up on this stuff! If you ever see this on clearance let me know. It's not only fun, it's great OT.
Later in the evening we try and get Hailey moving and out of bed. The nurse comes in and asks when Hailey last pooped? Uh...it's been a while. Since before we even came. Her belly is hard and they want to try Miralax but if that doesn't work...Suppository. 

Hailey has begun to at least bare weight on her legs and doctors are asking if we see that significant improvement we are waiting on. I wouldn't say it's significant, but it's something. That doesn't fit well I guess, because now we are see a few more doctors for this quiet Sunday and they start asking us lots of questions: 

  • What's your family background?
  • Are you of Jewish decent?
  • Does anyone in your family suffer psychotic episodes?
I know by the end of the night I am going to suffer a mental break down if they don't get to why they are asking these questions. The change in Hailey although better then nothing is not what they were hoping/expecting. They want to go ahead and do that blood draw for the Leukodystrophy panel on Monday. It has to be shipped to John Hopkins in Maryland. The results take 4-6 weeks. At this point when I ask about the L word the doctors tell me that whatever I do, don't google it right now. I just know it's something really really really bad and something you don't come back from. They are going to need a LOT of blood. Let's hope they can get it all in one draw. There is not a day that goes by where I don't think to myself, "I am dreading tomorrow."


TBC...