Thursday, May 29, 2008

Our terrible, horrible, no good, very bad day

We're on the roller coaster again. I thought we had jumped off it, but guess not. Now let me start by saying Saturday, Sunday, Monday and Tuesday night I didn't get more than 4 hours of sleep per night. Monday and Tuesday I had stayed at the hospital all night in a recliner. So sleep deprivation plays a huge part of my bad day. I was not prepared to handle anything bad. The nurses and doctor had told us that if he could eat good for a couple of days, we could go home. So, I made it my personal mission to get him eating; even if it meant sacrificing huge amounts of sleep. Well Wednesday when the neonatologist came in, he was talking about sending us home on Friday. While he was assessing him, he saw some jerking movements that Matthew was doing. He has been doing these since he was born and I've had multiple people look at him including the nurse practitioner. When he does these movements, we can put our hand on his arm or leg or whatever's moving and he'll stop doing it, which everyone has said that they weren't worried and it was probably just an exaggerated reflex. Well when the neonatologist saw this he wasn't super concerned but wanted to get and EEG (this test looks at brain activity) just to make sure that they weren't seizures. The EEG was done and I didn't think much more of it. I was more excited to get to go home.
Around 5:30 Dr. Minderman came in. Dr. Minderman(Dave) is one of the neonatologists and just happens to also be married to my cousin. So he's family. They've been on vacation and just got back today. I figured he was stopping in to say hi. But he sat down and began to tell us the results of our EEG. It showed that he was having abnormal brain activity, most likely seizures. I felt as if the floor had just dropped out from underneath me. Seizures, what does that mean for him. I couldn't even think straight. Dave was so good with us and I felt so bad for him. We had talked early on that he wouldn't get to involved with Matthew and let his partners take care of him unless he happened to be on call. Now I see why. How hard is that to have to give news like that to family.
So last night they started him on phenobarbital; a medicine to help with this "abnormal brain activity." I called Steve and he came from Lincoln right away. That made it a lot easier to have him here. He immediately took me out of the NICU and we went and got something to eat. We were able to sit and talk and visit. Steve also has a great sense of humor. He had me laughing by the end of the evening. Exactly what I needed; especially since I tend to be a very serious person. Now don't get me wrong, he is equally as worried as I am, but he balances me out so well. I guess God knew what he was doing when he put us together.
We also decided it was best for my emotional health to stay at the Rainbow house and get some much needed sleep.

Fast forward to this morning. I feel so much better. The neurologist came and visited with us, reassured us and gave us more information. She isn't so sure these jerking movements are "seizures", but does know that he is having abnormal brain activity even when he isn't having these jerking movement. The medicine should help this and we'll follow up with our pediatrician as he'll have to have levels checked frequently. We'll also follow up with the neurologist in 3 months to see what she thinks. The neonatologist thinks that this won't delay our dismissal more than a couple of days, but I'm not going to even think about it until they put him in his car seat and tell us we can go home. I got my hopes dashed and I don't want to have that happen again.

Of some note: you may wonder about his results of the VCUG from yesterday. It does show his kidneys have some reflux but it's not too bad. He'll need to be on a low dose of antibiotic for 1 year and we'll recheck his kidneys after 1 year. The kidney doctor says he has a "greater than 50 % chance of out growing it" by the time he's 8 years old. With everything else that happened yesterday, I'm not even mildly concerned.

Now one final thing. I think I could've handled this much better had I had even some quality sleep; but I was a wreck!! I've decided to give myself permission to go to the Rainbow house each night and let the nurses bottle him while I'm gone. I'm not going to try and kill myself over feeding him and then not be able to cope if another bad piece of news comes my way. And let me tell you, just when it seems that they can't find anything more, they do-so I'm not even banking on this being the last time we jump on the roller coaster.


Sherri said...

Jill- I'm so glad to hear you will be getting some sleep! It's hard to leave your little one, but Matthew wants his Mommy to get good sleep too. You'll both enjoy your time together more! We'll be praying for you to come home soon :)

Kristen said...

Oh Jill! My heart is right there with you! I know how it feels for the doctors to keep finding new things. All that unknown is so scary. I said over and over a lot, "If they would just stop looking they would stop finding stuff wrong!!" Of course I understand the silliness of that statement. But that's what it felt like. It's a hard hard situation! It's great to read about how wonderful you and your husband are together! Tell Matthew his friends in Ohio are praying for him. We're praying for you too Jill..and your husband! I think your little guy wants you to know, no matter what set backs have come up, he's still planning on blowing away the doctors with how well he's going to do!

Kadynsmommy2007 said...

Hi, I wanted you to know that you are in my thoughts and prayers. I have a son born with hydrocephalus and seizers, he also was born with two holes in his heart and cyst on his left kidney. My son has had 8 surgeries to to deal with his hydrocephalus. He seizers do not affect him at all when he does have them, and he only has them once in a great while. Really only when his shunt has malfunctioned in some way. Kadyn has been through shunt infections, faliure, and skin infections from incisions, and evd rotations. He is still the happiest baby boy ever. He is smart and wonderful. I understand everything you are going through. Kadyn was in the NICU for the first three months of his life, then just recently we had spent a month of ups and downs with his shunt this month at the hosptial. Kadyn was on phenobarbatol once, but it wasnt strong enough for him, so he is on Keppra now, and was siezer free until his shunt failed. I have kadyns whole story on my page.

Denise said...

Happy Birthday Jill!
Sorry to hear that you guys are on that roller coaster (i've always hated them!) You and Steve stay strong and take care of each other. We're praying for you.
Denise and Terry

Lisa said...

Jill- I have been busy with Elisabeth and I am behinf on reading updates. I am so sorry to hear that Matthew is having abnormal brain me when I say that I know exactly how you feel. It is so scary! I hopw that the phenobarbital works well for him. Take care and get some sleep :)