A few days behind.

Well as you can tell from my lack of posts its been a rough couple of days over here. Thursday afternoon Charli had some bloody stool in her diapers so that started a whole slew of tests. This continued into Friday and she had to stop her feedings. She is getting all her nutrients through her IV and hasn't had anything by mouth since Thursday at 11am. Even though she is getting everything she needs nutrition wise she still gets hungry in her little belly and cries and cries. It's so heart breaking to see, I just hold her until she calms down. At least that's one thing I can do because she loves to be held, she usually calms right down and goes to sleep if she's in someone's arms.

 Basically they don't know what caused the bloody stools so they have to treat it is if it were a number of things. The possibilities are:

• Her NG tube caused a tear in her stomach and since her platelets are low there was quite a bit of bleeding. They took her tube out, gave her a transfusion of platelets, and stopped her feedings in case this is what happened.
• She has an infection in her bowels. Her abdominal X-rays have all been fine and her blood cultures are still negative at three days. Her WBC is fine. But her CRP (a marker for inflammation) was high and she also had white blood cells in her stool which can signal infection. In case this is the problem they stopped her feedings, put her on two different antibiotics and her checking labs every 12 hours to watch the CRP and WBC.
• Worse case - necrotizing entercolitis. Nobody thinks this is what she has but since everything else they are doing is the same treatment for NEC they threw it out there as a very low possibility. Her KUB and blood cultures are fine and she's not running any fever so they're  pretty sure this isn't what it is. The treatment if it was would be bowel rest ( no feeding) and antibiotics so it's covered it by some chance if it happened to be this.

She hasn't had a bloody stool since Friday afternoon so that's very encouraging. Even more reason to think it was the NG tube since they took it out in Friday morning. She still can't have anything to eat until Tuesday just in case. The normal protocol is 5 days bowel rest and 7 days antibiotics. All of her labs are looking good as of right now. I'm just counting down to Tuesday until I can feed my sweet girl. Her hematocrit also dropping during all this so she had to get a blood transfusion. She got that yesterday morning and tolerated it very well.

A few other changes have taken place. She got a PICC line because her little veins keep blowing. I was really stressed out about her getting this but it's for the best because in can stay in for a while unlike the IVs which only last a few days and then she has to get stuck again. They gave her some versed before the procedure and she did great. She's actually still sleeping it off now, which is great because as long as she's sleeping she doesn't realize she's hungry. She was up to 4lbs 2oz but that's coming back down obviously because she isn't eating. Right now she is right at 4 pounds even.

Her platelets continue to go down after transfusions but it seems to be taking longer to go down so that's a good sign. We now have a hematologist from St. Jude working with us to figure this out. He has a few theories but the main one he is looking at is called NAIT. I don't remember what it stands for but I can explain what it means. They think that possibly Travis has a marker on his platelets that matched something my body indentified as a foreign or threatening object and developed an antibody against them. So I passed the antibody to Charli and her platelets are actually attacking themselves with that antibody. If this is the case it's actually not that big of a deal because in time the antibody will fade and stop attacking the platelets. In order to prove this diagnosis correct we will both need labwork so we will be taking care of that this week.

The neurosurgeon came in Thursday morning and said the sutures in her head don't feel as separated as they were earlier in the week so he's not worried about doing the shunt anytime soon. He has actually put it on hold as long as she keeps doing good. Which is a good thing since she's not gaining weight anyway.

She had a pediatric neurology consult and he said everything looks good with her reflexes, tone and reactions. All very good news! They will continue to see her and monitor her progress while she is here. The ophthalmologist came in and looked at her eyes and said everything looked great! So more good news. We just have to take the good with the bad.

So in conclusion Charli is doing great as far as all her consults and tests. Her vitals continue to be very good and no need for oxygen. Her cyst doesn't appear to be getting any bigger by daily head circumference. They will continue to monitor with weekly ultrasounds. We are still working on the issue with her platelets. The only thing we are worried about is what cause this blood in her stool and that seems to be resolving very well. We will try to start feeding by bottle only on Tuesday.   :)