04-03-12 – END OF DAY 6 – CPMC/CHONY PICU – 29-25-6

Faith is again on a wean of O2 & NO along with other medications. She was removed from the Heparin drip and started on her long-term anti-coagulant (Lovenox). It’s a twice daily injection but she did well on her first one. We will give the injection through a small port so she doesn’t have to get stuck every day.
Her ultrasound of her legs yesterday showed that the clots are “dissolving” and her body is forming new paths around the clots. Both are good signs. She is also now allowed and encouraged to get out of bed.

We expect her to stay in the ICU through early next week. She will not be coming directly home after the ICU. We along with her doctors have decided that she needs to go to a rehabilitation hospital. She has been “sick” for over 5 weeks now (she started with a “virus” on 2/28). She has obvious weakness, has regressed a bit on speech and has some “drug” issues to get over. We always said after the experience we had with Jonathan after his series of surgeries and hospitalizations that if we had to do it again we would go the rehab route. The hospital will most likely be Children’s Specialized Hospital in New Brunswick, NJ.

How are we going to pull this off? Well it’s 40 minutes from Sue’s work and 1:35 from home. Sue will stay with Faith after work and overnight, I will come down in the morning and stay with her during the day. Sue must return back to work on Tuesday the 10th (No more sick/personal days left). We’ve considered FMLA but don’t think we can continue to take the financial hit. We will make it through as we always have.

Glad things are quiet now and hope they keep that way through the weekend with no more surprises.

I’m starting a website www.faithsfolly.com so I can stop doing updates to various places, not everyone has or wants Facebook access. I’m in the process of backfilling the new site now and will let you know when it is ready. It might be another month before Faith finally gets home so I want all her friends and family to have access to updates and some good news.

One thought on “04-03-12 – END OF DAY 6 – CPMC/CHONY PICU – 29-25-6

  1. Very cool page Joe!! Thanks for keeping us up to date. My day is not the same without my hug every morning. Please let your Princess know that “Richeda” is missing her and to get better quick.

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