Well not the news I was hoping for today. Elizabeth has another bacteria growing from her cultures, so more infection to treat. Last night I posted info a blood test that they are doing to help us with determing her infection. The blood test they do is called CRP (C-reactive protein), it shows acute infection or inflamation. CRP levels above 1 indicate infection. Elizabeth's level was 25 earlier this week and today was 23. She has to be below 10 to be considered a candidate for listing. SOO we basically have a long way to go! Her antibiotics have been changed up some to try and provided better treatment, but the cultures are still growing so all of the sensitivies and resistances have not been fully determined yet. As they continue to grow her treatment will be changed around more. Also the hope is that the IVIG she got the other day will assist in her ability to fight these infections. These infections will continue to show up since they are all related to the fact that she has a trach, having an artificial airway will always increase her risk of infection. So we are stuck, Dr Mallory seems very optimistic that she will get listed but we have to get her over this hump. The PICU Dr's dont seem as sure about things. And I have no idea what to think anymore.
Matt stayed at the hospital last night, and it was a rough night! Her blood sugar was low, her blood pressure was dropping all night, and her oxgyen satruation was low 90s/high 80s on 100% oxygen. Today she hs been having more issues with keeping her satruation up, again Dr Mallory came in and bagged her to find the "perfect settings for her". She is again on higher pressures, every time he increases them the PICU team trys to wean them down. I think they had a meeting earlier and discussed her needs and what will work best. So HOPEFULLY everyone is on the same page now. Since he made these adjustments on her vent she was able to wean down to 75% oxgyen with saturations around 94. So a big improvement from sitting at 85 on 100% oxygen which was what she was doing for the hour before he came in.
I have mentioned before that she had an arterial line in so that they could measure her blood pressure and also draw blood for her labs from it. Her artline from Vanderbilt went bad the day we got here and had to be removed. They were able to start a new one in her wrist and it also stopped working earlier in the week. So they put a new one in her foot, which stopped working yesterday. Last night they tried twice to get a new one, and today tried again with no luck. She HATES being stuck and being stuck in an artery is more painful than getting a regular IV. They are planning to try again this evening after she has time to calm down from all of this. They were able to get an ultrasound of her foot and found a good artery to try for, hoping they can get it, since without the line she has to be stuck numerous times a day for labs/blood gases. She is very puffy/swollen from all the meds/fluids she gets so its hard for them to find any place to stick her.
Her stomach is still huge and gross looking. They have stopped her feedings today and she will just get TPN/lipids for nutrition. Hopefully they can get her digestive system working better today and be able to start feeding her again soon.
So I guess the good news for the day is that she is still off the paralyzing meds, so that is something to be thankful for. She doesnt really wake up since she is still heavily sedated. But she does move her fingers/toes and her mouth alot. She holds onto our fingers when we try to comfort her and that definately makes us feel a little bit better knowing she can tell we are here for her.
Lets hope that Elizabeth's first Christmas is one of stablilty. That she can stay stable and calm through the weekend, and her infections start to clear up and her CRP number dropps significantly by time for blood draw Monday morning!
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