Monday, September 16, 2013

Liver disease

The last week has been a whirlwind of activities and by the time i sit down at night i have been to exhausted to write so i apologize for taking so long for an update.
Mike and I spent Thursday through Sunday in Laguna Beach, CA  celebrating two of our best friends getting married.  It was a beautiful amazing weekend and it was so nice to be able to get away for a few days to be with Mike.  While we were gone my wonderful Mother and Father came to Salt lake to stay with our children and make sure they were okay.  Saturday as we were driving to the wedding ceremony my mother called me to let me know they were at primary childrens emergency room.  Capris tube had come all the way out of her nose and they needed to replace it.  Unfortunatly it was the weekend and with no radiologist on call their was a chance she would need to stay over night at the hospital.  After waiting nervously for a doctor to call me back, hoping that I wouldn't get the phone call in the middle of taking bridal pictures the doctor finally called and told me a radiologist was on his way and she would be able to go home soon.  While they were at primary's my other two children were playing with the neighbors on there trampoline back at home.  Our neighbors daughter who is the same age as B fell off the tramp and hurt her arm (she may have broken it but I have not seen them to find out for sure).  That could have been B.  We could have had 2 of our 3 children in an emergency room while we were out of town. I want to put all 3 of them in a bubble and keep them away from all things dangerous.
We got back from our trip at 1230 monday morning.  Fell asleep soon after, woke up at 2 to change out C's feeding bag, slept till 6, time for meeds then up again at 8 to get everyone ready to drive to the hospital.  Back to no sleep, our vacation is over.  C had an appointment with a gastroenterologist to check for liver disease.  After rushing kids out the door and getting breakfast snacks for the car we headed out.  My car  was out of gas, get to the gas station, fill up her alarms start going off.  Fix feeding tube and start driving.  Alarms go off again.  Pull over fix them, start driving.  Ten minutes later alarms go off.  Good lord Im never gonna make it.  Finally her machine starts working and we make it to her appointment.  There are 3 different liver diseases the doctors are concerned with.  2 are controlled with medication 1 is more serious.  All 3 have names that are longer than this blog.  The main concern is her conjugated bilirubin.  They want it to be between 0-0.3.  The day we left the NICU hers was at 1.6.  It was 2.4 when she was born.  They wanted to draw labs in the hopes that her levels have continued to go down.  Mike left and I took her to the labs.  First lab nurse.. pokes twice, gets nothing.  He calls in "the big dog" (his words not mine) He tries in two different places.  First one.. nothing.  Second one blood slowly trickles out. Thick. dark blood.  after a few minutes we finally got 1 cc.  Then it clotted off and he had to take the needle out.  He called the IV team to have specialists come down.  It was going to be at least an hour so I went to get my other kids from the play area to get some lunch.  Then we walked across the walkway to check on my little brother who was having surgery on his VNS to help control his seizures.  (my family is keeping hospitals in business this year).
Back to the Lab clinic to see the specialists.  They prick her foot, nothing.  Arm, nothing.  Hand, nothing.  Then one nurse started looking at her scull to find a vein their.  My stomach dropped.  That is the worst place to draw blood please don't put her through that.  They decided to try her other hand to see if they could find a vein.  Finally blood started trickling out.  We had to sit her up and let her cry so the blood would continue to flow.  After 15 painful minutes they finally had 4ccs of blood.  I don't know why her blood was so thick but we will be taking her to the pediatrician on Friday and will hopefully have some answers.  I cant even think about liver disease and having another organ fail.  Its to much for me to take in right now so until someone tells me 100% yes or no I'm pretending like nothing is wrong.  That her liver is like every other babies liver.

Back to the the U to check on my brother.  He is out of surgery and doing fine.  He understands more than any of us what Capri is going through.  He has been there.  He is there, taking excessive amounts of medications everyday, having a body not act the way you want it to.  He will always have a special bond with Capri that none of us will be able to understand.

Its now midnight again with 2 hours before i need to get up to change feeding bags. I am so grateful I was able to have those few days in california.  To be able to sleep through an entire night, knowing that sleep is going to be hard to come by for the next year, not only with the feedings but with the fear of her passing away while we sleep.  So tonight as I lay next to her, im counting my blessings that she is still with us and doing so well.  And i hope that I will continue to be grateful and have these blessings be apart of our family.