Omegaven - week 2

I apologize immensely for not blogging before now.  Sometimes, I just don't feel up to it.  I will try my best to do it daily or every other day.  Because now, there is so much to catch up on. I will start with her labs.

Omegaven was started on 5.6.14 and I believe I posted those results.  Most of her liver function labs are Mondays and Thursdays now. Anyway, here are her labs from

5.15.14:

ALT - 129
AST - 204
Alkaline Phosphotase - 319
Total Bili - 36
Direct Bili - 25.70
Albumin (5.12.14) - 3
INR - 1.3
CRP - 2.49
Platelets - 61

Labs from 05.19.14:

ALT - 236
AST - 369
Alkaline Phosphotase - 298
Total Bili - 41.4
Direct Bili - 29.40
Albumin (5.12.14) - 3.1
INR - 1.4
CRP - 3.02
Platelets - 95

Her bilirubin levels are as high as I have ever remembered them being. Everything I have read about Omegaven (I have read about everything there is out there), her bili levels will rise before they drop. It usually is not this fast though. So, we can only have faith in Omegaven and hope those levels go down. Some good liver news is that her INR is still in the good range, her Albumin level has increased and her Platelets just keep rising and rising.  These numbers are very good.  And, Molly's GI doctor (the omegaven doctor) says that based on these numbers, her liver is holding stable.  They are concerned about her bilirubin levels, but they are kind of stable.  We just have to pray and hope that the Omegaven does like it has proven to do, and that is to start seeing a drop in those numbers.  Her CRP is up, (2.49 to 3.02), (up is not good). But, she had infections in both PICC lines. 

Onto the infections. On Saturday, she spiked a temp. So, they started her on 2 broad spectrum antibiotics (vancomycin and zosyn) and did cultures. Today they were able to identify the infection. It was staph. It thankfully did not get into her blood stream. In fact, the cultures they drew the day after they started antibiotics are negative.  So, it appears as though the infection was caught in time and they have now started her on an antibiotic specifically for staph infection.

She has been started on pedialyte.  A very small amount, just to wake up her gut. She has tolerated it beautifully so far and has even pooped!  Yay for poop!  I almost took a picture of it.  Gross, but when your daughter had her intestines hanging out of stomach for 3 months and pooped in a bag, this is great news!

The nimbex (paralytic) is being weaned daily. She is now starting to open her eyes and stay awake for more and more each day. She wiggles her hands and feet, too.

Here's the overall plan:  Continue to wean the nimbex. When that is gone, start to wean the nitric oxide (as long as her echo is okay). That will probably occur over the span of a week. After that will come weaning the narcotics. She is currently on drips of fentanyl and versed. She is on scheduled doses of methadone and valium. Eventually, the methadone and valium will be increased until maximum doses are reached, then the fentanyl and versed will be weaned until she is off of them.  Intermittently, the vent will be weaned and the pedialyte will be increased until she is on the full amount. After that, we will switch from pedialyte to neocate
(formula). So we have a LONG road ahead of us, but we will certainly get there. Just have to have patience and pray and enjoy each and every day with our cute little peanut!

Please don't ever leave Molly out of your prayers. Even though she may be stable, we still need prayers to keep her that way.

Thank you to everyone reading this!

Amy