Where do I begin?

What a week it has been. And not in a good way!  Dear Sophia Faith was home for all of about 14 hours before we were back at the ER with her. She apparently had a shunt infection that started before we were even released from Texas Children's Hospital, but wasn't caught before they let us go home!
She cam home last Thursday and we arrived at the house about 1:30 in the afternoon. It was so good to have her home and the kids were so excited to have her here. Chrissy couldn't stop smiling every time she heard Sophia cry, and Stephen was so happy when he came home from school and she was here. He got to feed her a bottle and sit and cuddle with her. He is such a loving big brother!
She did well for her 6 pm, 9 pm, and midnight feedings. Took all her volume by bottle and I didn't even have to use her ng tube at all!  Then, about 3 am Friday morning, when she woke for her feeding, she seemed very fussy and irritable. She did not want her bottle, and wouldn't tolerate her tube feeding either. She was making a little moaning sound that broke my heart. I sat up with her in the rocking chair and just held her and patted her back til she finally fell back asleep. At 6 am, we were up again, and she still wouldn't take her bottle and she seemed too lethargic to me. I called our pediatrician's office right at 7 am, and they had me bring her in as soon as they opened at 8 am! We were able to see our pediatrician, Dr. Pope, who is wonderful with all my special kiddos!  He looked Sophie over and agreed with my fears that it looked like her shunt was getting infected. I knew it! It was what I suspected from the beginning.
So, back to Texas Children's we went - arrived at the emergency room about 9:30 am Friday morning.  They were pretty quick to get her CT Scan and Shunt series (x-rays) done. All looked normal, but by this time her fontanel was starting to bulge from fluid build up and her eyes were doing that typical "sundowning" that is so common with shunt malfunction. Neurosurgery was called and Dr. Dauser arrived about noon to tap her shunt. He took CSF fluid out and ordered lab work stat. Stat in the emergency room means within a few hours (unfortunately)! So it was sit and wait time. In the meanwhile, Sophie's heart rate was climbing and her respirations were also very high. The emergency room attending physician was very worried and started asking me what we wanted to do should she stop breathing! Yikes! THAT was a scary question!
And why did they even ask?  Because Sophia Faith has Hydranencephaly. So, of course, the question is always asked "do you want to treat her?"  "does she have a DNR?"   "don't you want to just let her go home and have nature take it's course"? 
It is an ongoing struggle for parents of children with Hydranencephaly to get treatment for our kids. Too many doctors still read the one or two paragraphs in a medical textbook about Hydranencephaly and decide our children will have "no quality of life" and they are "terminal". So the question always gets asked. And even when it is answered, it often gets asked again and again and again! It is very frustrating.
Sophia has an infection. If a "normal" child has an infection they are treated. Heck, even a child with other disabilities gets treatment for an infection! So, why do we have to constantly defend our decision to get treatment for our children?
Because the doctor's were so worried that Sophia was declining in the ER, I called birth mom and her mother to come up to the hospital. I felt they should be there if anything went downhill with Sophia Faith or if indeed there were hard decisions to be made. They came right away. Kevin also started up to the hospital.
I talked to Dr. Dauser, and we decided that we would treat Sophia's infection. The treatment would begin with her going back into surgery to have the infected shunt removed. She would then need an external drain (EVD) to keep the excess cerebral spinal fluid at the proper level in her ventricles. She would probably be on antibiotics for 3 to 4 weeks and then a new shunt will be placed. All was decided and once birth mom  got to the ER, we all went upstairs to the surgery suite to prepare for surgery.
It was then that we were forced to endure a HORRIBLE hour long lecture on why we should let our daughter go home to die! Yes,  you heard right!  We had an anesthesiologist (call me for the doctor's name, for those of you who would like to avoid this person in the future) come into our room and actually LECTURE us on futility of care and how he and his wife (a pediatrician) often had discussions on the futile care and the money it cost to provide such care. He pulled up Sophie's CT scan images and proceeded to screech and lecture about her brain being missing and didn't we UNDERSTAND it would not grow back?!?  Didn't we understand she would be intubated for surgery and would never come off the ventilator! When we explained calmly that we did indeed understand all about Hydranencephaly and that we had a daughter who has hydranencephaly, who is now eleven years old, and that we wanted Sophia treated as we had had Chrissy treated in the past, this guy just would not take no for an answer and proceeded to try and pressure birth mom into saying she did not want Sophie treated!  INCREDIBLE!  But I was so proud of birth mom. She stood firm and looked him right in the eyes and said "I want my daughter treated".
Sophie went into surgery about 5:30 pm and was then transferred back up to the NICU, same bed she was in before being released on Thursday. Which was great because we got the same neonatologist and the same team we had before. We love the neonatologist, Dr. George Mandy. He is just wonderful. So patient and caring, and is willing to do the very best for Sophia Faith. And of course, as I expected, she was extubated the following morning with NO PROBLEMS! So much for never coming off the ventilator!

  Sophia has improved somewhat since Friday. She has better color, her blood count is up and the infection has cleared from her blood. She is tolerating her feedings and has not lost weight. But her CSF is still carrying a bad infection and so far the antibiotics are not helping. So today, she received her first intraventricular injection of antibiotics. She is getting her antibiotics directly into her CSF fluid (directly into the ventricles of her brain). The hope is that this will jump start the clearing of the infection in her head and spinal cord. She is still very sick. But she is fighting and trying so hard to be alert and active. The last two days she has been very irritable and fussy, so she has had to have either Chloral Hydrate or Morphine, to settle her down and help her rest.  We can use your prayers, friends!
We so want to bring dear Sophia Faith home! And keep her at home this time!!  She is such a sweetie!

 Tomorrow I will write about the rest of our week and why it was such a hard one! I have many friends in dire need of prayers this week. Praying Heavenly Father stays close to them and to us, as we all face the trials that are upon our families at this time!