Tessa Reed Shea's Documentary: Who's sleeping in my bed

Thursday, February 9, 2012

Who's sleeping in my bed

I had another rough night last night with my nurse Heather. I don't know why nights have been so hard for me the last few days. My heart rate stayed really high almost all night and no matter what Heather did, it wouldn't really come down. I was also very congested and extra albuterol nebulizers and morphine didn't seem to help my respiratory distress. I think eventually I just got tired and fell asleep around 3:30 am.

My day with my nurse Tiffany was much of the same, except I added in three large poops!! You can just imagine what excitement that added to my day. My heart rate stayed a little lower than it was last night but I was still dealing with lots of congestion and seizure activity.

My hospice nurse talked with Dr. Gien today to discuss my meals and he sees no reason to switch anything on me now. That is fine by me because I seem to be doing ok on the calories from my infant formula and the last think I need now is a gut problem! So, the final decision today was to keep things the way they are for now.

I was trying to get some sleep this evening and there was lots of commotion going on around me in my crib. Turns out Brody wanted to get in and snuggle with me. That didn't seem to bother me one bit because I slept right through everything.

Even though I was sleeping, I could still hear his voice and I love to have him near me. I think he missed his old crib and his old mobile which he kept turning on, and on and on until Daddy told him it was time to hop out and get ready for bed:)

Then we all opened Valentines gifts from Nana and Pop-Pop Shea. I loved my card and can't wait to wear my new pjs:)

Now I am enjoying a little hand holding with Mommy before my night nurse Beth gets here. Let's hope tonight is a better night for Beth and I.

1 comment:

AnonymousFebruary 11, 2012 at 12:58 AM
Cutest pictures EVER!
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My Story

I was born on January 18, 2011 and weighed 6lbs 14.5 oz and was 19.75" long. I was born with lots of fluid in me and no desire to suck or swallow. It wasn't until 12 hours after I was born that doctors started to worry about me. I had an MRI, CT scan and EEG and they discovered severe damage to the thalamus in my brain and diffuse white matter.

I spent a month at the Children's Hospital NICU and they sent me home with a nasal gastric (NG) tube because I still couldn't eat. I started to make a little progress drinking from a bottle at home (10 mls at a time) and then I got the flu and ended up back at the hospital.

It seemed like just after the flu I started arching much more than I had before and lost all desire to want to eat with a bottle. My arching episodes got much worse and Mommy and Daddy thought I had reflux or maybe a stomach ulcer from my NG tube. We scheduled surgery for a stomach feeding tube (G-tube), but ended up at the emergency room because I was arching so much and started to have trouble breathing.

When we checked into the hospital for the 3rd time, they gave me morphine to see if it would take away any pain I might be having from my NG tube. When that didn't stop my arching, they knew something else was wrong. They hooked me up to an EEG and found out that I was have lots of seizures, abnormal brain activity and something called hypsarrhythmia.

The doctors left the EEG on for several days to study my brain activity and my brain activity was something most doctors at the hospital don't see very often. That is when they diagnosed me with Ohtahara Syndrome and also a form of West Syndrome. The seizures are a side effect from my brain injury and my prognosis is not very good. Mommy and Daddy from the advice of some amazing doctors, have decided to bring me home to spend time with my family and experience as much love as I possible can.