Another good night for Faith & Mom.

Yesterdays blood cultures came back negative which indicates that the antibiotics are working, she will need to be on them for about two weeks. She is slowly adjusting to the ventilator wean but it’s still a while off before we get away from it. She also has a lot of fluids to mobilize and get rid of. The type of bacteria she had causes the veins to get leaky and lots of fluid is lost to surrounding tissue. They infused her with Albumin on Saturday to help suck it all back into the bloodstream so the kidneys could get rid of it.

They pulled the foley today since they think it was the source of infection as her urine cultures were positive. They have also called in infectious diseases on a consult to see what can be done to prevent more infection and make sure her immune system is operating at it’s best. It’s a known fact that kids with Down’s Syndrome can have weakened immune systems.

It’s safe to say she is on the mend back from yet another complication. It is also safe to say that we are not getting out of the hospital anytime soon, which most likely will make inpatient rehab more a possibility. She was so strong after her last discharge we thought that inpatient was a bit of overkill and we might be able to do it outpatient. We will see how she does with time.

The family would again like to thank everyone for all their kindness and help over this whole ordeal, you are so appreciated. Thanks to all of you who take the time to read my rantings about our little girl and her antics.

Not superstitious or anything but glad to be beyond day 13!

Good night, actually was able to get some restful sleep. Faith behaved very well and has improved somewhat overnight. They were able to stop one of her medications to keep her blood pressure (BP) up (vasopressor) and have been able to start weaning the other (dopamine). Oxygen levels are very good will still quite a bit of support from ventilator but it is also on a very slow wean down.

Long road ahead, hopeful we are taking the first steps.

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