Roller coaster ride of a day. She had one more major episode requiring some rapid infusion of fluids and some additional medications to keep her blood pressure up.

She “seems” to have been mellowing out since midday today, we will know better in the morning where we stand.

Wild night. Faith took a turn for the worse last night. At about 3:00AM her blood pressure started to drop very low. They pushed fluids into her as quickly as they could from all the access she had along with two medications that increase blood pressure. She responded right away to the fluids & meds. About an hour later we were in the same circumstance.

The problem was she was in septic shock a very scary scenario especially when you are waking up to it.

They have started a central line to give her the medication dopamine which will help them better regulate her blood pressure, and additional peripheral IV line and an arterial line where they can monitor blood pressure in real-time and draw blood for blood gasses.

She is currently get a lot of support from the respirator but her vitals are holding. I asked and was told the next 8-12 hours (till around 6PM Saturday) would be telling how well she is responding to the antibiotics and supportive care.

For our friends in the medical field: gram-negative rods, Vanctomiacin,Tobramycin & Zosin

I will post early evening today on how her day went.

Mom is home with the other three kids and Dad and Faith are spending the weekend together.

Faith had an OK day. She has been all over the place with her O2 levels, requiring more help during different parts of the day. Multiple things are contributing;

• In an attempt to “dry her out” they may have over done it a bit and she might be a little dehydrated. They gave her a bolus of IV fluids which helped her in a few ways.
• She had a bit of a fever today 101.5 Axillary. It’s borderline if it’s indicative of a new infection or not. There is some worry that she might be developing a pneumonia.
• Hopefully no new pulmonary emboli (PE) or change in status of them.

No chance of extubation this weekend. Early next week likely as long as the complications keep at bay. Some day she will hit me for this but she really needs to take a poop. Poor kid is really backed up and they have been throwing everything at her. I’ve been known to bring out the best in her so hope my magic works this weekend

Let’s hope and pray for a an easy rainy weekend for Faith & Dad

** THE WEBSITE WILL BE DOWN TONIGHT FOR EXTENDED EMERGENCY MAINTENANCE FROM ABOUT THU 10PM EST UNTIL FRI 8AM EST **

• NO Extubation today 🙁
  • She is not ready. She will probably not be ready until after the weekend. Very often when being mechanically ventilated and laying around in bed you can accumulate more fluid that you put out. She has a bit of fluid overload and one of the most affected places is the lungs. They are giving her diuretics to assist in peeing it all out but it takes time.
  • Clinically she is showing signs of someone who still needs ventilator assistance (increased pressure & oxygen levels).
  • If she were only against one airway issue it might be advisable to attempt. She has both upper-airway issues that should/might be better and then is still dealing with pulmonary emboli in both lungs. The emboli alone would increase someones need for oxygen, the narrowing of the airways makes that harder to do.
  • We all agree that giving her the optimum circumstances is what we all want for her to be able to be successfully removed from the ventilator. Failure is not an option. We are not there yet. Time and patience will help her heal the best.
• Mom’s getting a break this weekend. Dad will be staying with Faith on both Friday & Saturday night. Mom is beyond tired and needs a bit of time away from the insanity of an ICU.
• Not much else happening. I’m going to try to get a copy of her hematology report by the end of the weekend so we know if the blood clots were a fluke or perhaps there for some time and linked to genetics.

A little late due to technical problems with the blog server (imagine that happening to us).

Faith & Sue had a very quiet and good day.  I was unable to see both as I was with Jonathan who had two doctors appointments in NJ to go to.

On Thursday both Abbey & Jessie will accompany me into the city to see their sister, they have Wed & Thu of this week off.  It should be a busy day as the plan is to extubate Faith to remove her from the ventilator.

Hopefully Thursday will go well and I will have more good news.

Every cloud has its silver lining but it is sometimes a little difficult to get it to the mint.
— Don Marquis