Spent the night last night out of the ICU on a regular medical/surgical floor. OK I admit it we are ICU snobs and have come to have some very high expectations of doctors & nurses. Last night’s nurse was what I call a No-Doz-Nurse, don’t sleep if you want you kid to survive the night. Didn’t & she did so success for Faith.

The good news, Faith is now in Rehab. We were transported to Children’s Specialized Hospital in New Brunswick today. We are already happy we made the choice.

Faith settled in very well. They fit her for a wheelchair as soon as she got there. She is still too weak to get around on her own so wheels will do the work. She has also be taught and learned about wheeling herself about (an indirect way to rebuild that upper body strength). Regular clothes (on patients and staff) go a long way when you are so accustomed to hospital garb. Mom is very excited about letting her get a real good and long soak in a nice warm tub tonight to start getting though a month’s worth of yuck.

A well-deserved good night sleep for all.

It’s been a good day. It will probably be easier just to tell you what Faith is still on vs. what all has stopped.

O2 via a nasal cannula at only 1ltr (which is low) and doing well, the objective is to get her to room air doing just as well as with O2. They have stopped the Heparin IV (anti-coagulant) and started the injectable one (Lovenox), she tolerated placement of the port very well and shots as well. Most all of the IV’s will be ready to pull very, very soon and she will go over to oral medications. Finally the arterial line will be taken out before she moves out of the ICU.

They would have moved her out today if a bed was available on any floor, but there was not. We are so hoping she stays stable and will be ready to transport to Children’s Specialized Hospital (CSH) by no later than Friday.

Fingers & Toes crossed.

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.

Quick update and recap for those on the e-mail list:

• Faith is stable, breathing on her own with just some Oxygen(O) and Nitric Oxide(NO). They have started to wean her off the NO. NO is used as a vasodilator to open the blood vessels of her lungs.

• She is awake most of the time on very light sedation to keep her comfortable and in the bed and to also make sure she keeps her IV’s in along with the oxygen on.

• She has restarted the Methadone/Ativan wean for the narcotics she was on from her last stay in the ICU.

• The team is meeting again on Monday 04-02-12. They are going to order another Ultrasound of her leg to see what the clot looks like there and if it has changed any. Based on that the FINAL decision on surgery/conservative approach will be selected.

• Presuming everything stays status quo the plan will be to switch over to the new anti-clotting drug Lovenox over the next several days in preparation for going home

• We will be working with Hematology to determine if this was a pre-existing bleeding/clotting disorder or not and therefore determine future treatment.