Gracie decided that the New Year needed a little spice and excitement. So, shortly after 2007 rang in, she had a seizure which then lasted 2.5 hours! She had to be paralyzed and intubated and put on the ventilator and shipped down to Boston Children's Hospital. Needless to say, her family was very concerned and the trip to Boston seemed to last an eternity.
At Children's, she was in the medical intensive care unit and spiked temperatures to 105.4 degrees! Poor baby! She had every test in the world done to try to find a source of her infection - nothing has come up yet except that she now has a terrible cold/bronchitis. She only stayed on the ventilator till Monday afternoon and was out of the ICU Tuesday evening. We spent the night on the neurology floor and convinced them to let us go home Wednesday evening - maybe one of the shortest stays in the history of ICU patients at Children's (per the chaplain).
Those three plus days in the hospital, mostly in ICU, felt like such a long time of torturing little Gracie as she quickly learned to cry and whine anytime that someone entered her room in a yellow gown and mask. She had uncountable blood draws (and she's a hard stick so most blood draws took more than one needle attempt) and 3-4 IVs in addition to foley catheter, ET tube for breathing, rectal probe for temperature monitoring, spinal tap, CT scan of her head, PPD placed, EEG to monitor brain waves, and monitors on her at all times. By the end, she was starting to be braver with all the medical experiences but preferred being snuggled on our chests at all times. Her discomfort and pitiful whining/crying made the days go even slower and we were only too happy to take her home to sleep a full night through in our own bed.
God clearly orchestrated this experience in so many ways, here are a few:
1. We were in America not Liberia when this happened.
2. We were within 5 minutes of police and ambulance help.
3. We were within 1 hour of Boston.
4. We were awake when she started seizing and could help her immediately.
5. We got tons of tests done in a very short time which would have taken months to do as an outpatient.
6. We met very compassionate and expert specialists who were attentive to our concerns and answered many questions.
7. We had family nearby who attended us as Christ's very hands.
8. We were home and not traveling for the first time in 2 months.
9. We were both off work on vacation.
10. We were able to reach the director of a local agency that provided us with vouchures for food and parking and gas to relieve that burden.
11. Gracie's IV infiltrated (i.e. medication went into her hand and not her vein) with vancomycin in her most functional hand but the swelling is going down and she's using the hand again.
12. We have strong prayer support surrounding us.
13. Gracie suffered no obvious ill effects from such a long seizure - she remembered how to take steps again yesterday!
14. We are now equipped to keep her seizure free and help her faster if she does start having a long seizure.
15. We now have direct phone numbers to neurology and infectious disease if something comes up with her.
16. We have a closer relationship with her pediatrician who was quite concerned about Gracie.
Please pray for her as we resolve her Hepatitis A, work on her failure to thrive, try not to worry about her microcephaly, manage her seizure disorder, and get her the resources that she needs for her cerebral palsy. She will be on seizure meds long term and our prayer is that she will be able to go off the meds within a few years - pray with us to this effect!
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