All about Lizzy's life and my life as Lizzy's caregiver. Lizzy has Spinal Muscular Atrophy Type 1 and is a miracle! She has NEVER been able to stand, walk or sit(with out assistance). She is such an amazing child with the determination to over come many of her battles with this terrible disease. She is a happy child and is always smiling.
Saturday, November 8, 2008
Lizzy is sick (Spinal Muscular Atrophy Type 1 )
Lizzy woke up so sick this morning. 102 fever at 3:20 am this morning. I have been doing treatments more then q-3 and some q-2 1/2. Heart rate was in the 170s!!!!! She was in the 120s and 130s 10:30 pm tonight . O2 is staying at 97-96 so that is good. Her heart-rate is usually in the low 100s awake and drops to the 70 and sometimes high sixties sleeping.
I have gotten almost everything ready just in case a trip to Madison. Hopefully it will not come to that. I pray I can do this at home but if she doesn't remain stable on with her O2s we will be going but so far its just been stressful worrying about her but no low o2. Her higher heart rate scares me. She had thick white gunk but it has started to thin out.We got her back on Zithermax but it she has what we did its viral and the antibiotic will not work ugh..... I have not fully recovered myself. I am very tired. I even wore a mask to sleep almost all week in so she didn't get her sick .. I even washed my hands an sanitized more than normal. I used gloves for treatments I wore a mask constantly. Lizzy's father on the other hand was sick 3 days or more days before me and did not take as many precautions!
Lizzy has not been this bad in a year.
Just finished another treatment and she is doing better. She is on her magic mixture of pedilite/Breast milk and Tolerex .
She feels she has had too many treatments today. Glad she can keep her humor up. She is been very hyper today and has talked non stop.
Love her with all my heart. She is my girl. She has spunk and determination,
Please add her to your prayers.
This is the 3rd time she has been sick in two months.
On a good note Senator Dan Rutherford's asst Peg will be trying to figure what is going on with the insurance denials for Lizzy.
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2 comments:
Jeanna, I totally understand not having time to keep up with everyone! I'm so sorry to hear that Lizzy is sick again. We will be thinking of you guys. My oldest boy woke up with a fever and stuffy nose this morning so we are on high alert around here also. So far Kaitlyn is fine.
This season has been horrible! This is our fourth illness to go through the house. We didn't have four colds the entire winter last year. However we did have aspirations, aspiration pneumonias and major diet related reflux issues. Overall I think this fall is still better.
I think we are all doing a good job trying to keep our children healthy, but we just can't keep them in a bubble. Hugs to you and Lizzy. I hope this cold blows through quick and that you can manage at home! Kim and Kaitlyn
oh no!!! Im so sorry shes sick!!! And your still on the mend, I hope with all her treatments she is able to kick it fast and stay home (no hosp trips) Sending you guys lots and lots o prayers and feel good wishes. Sheila
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