We are awaiting transportation back to CPMC/CHONY.

Faith started developing respiratory issues again on Sunday. They have not improved adequately since then.  A neck X-ray this morning MIGHT indicate an abcess pressing on her windpipe.  The experts here are split. This facility is not
setup for acute care. So we go where we need to until this all gets sorted out.

Faith & Mom had a good first night at CSH. We are still monitoring Faith’s O2 saturations as she sleeps as there is still some sleep apnea made worse by the pulmonary emboli (they make it harder to get oxygen into blood).  Unfortunately Mom & Faith were woken many times by the alarm on the monitor and Faith had to put on a nasal cannula, which she hates.

She had a good day today with her first day of therapies; Recreational Therapy, Speech Therapy, Physical Therapy and Occupational Therapy.  After dinner we gave her another good bath (her second one this month!). She was good and tired when we left her at 8PM, hopefully she gets another good night’s sleep.

A few people have asked about visiting.  I will post her therapy schedule for next week so you can plan your visit around them.  I will be with her during the day until around 4PM when Sue gets home and then return the next morning. Here is a link to CSH’s visiting information (http://www.childrens-specialized.org/For-Patients-Families/What-to-Expect/During-An-Inpatient-Stay.aspx)   and directions (http://www.childrens-specialized.org/Locations/PSE-G-New-Brunswick.aspx) .

Bringing the real camera tomorrow so I can get some good pictures, no more cell phone shots.

Happy Easter to all, and to all a good night.

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.