Wednesday, January 27, 2010

The Baby that Suprises

We took Sara into the doctor Tuesday afternoon concerned that her reflux was not improving enough. I mentioned last week that we had several good nights and days in a row, and we did. We really thought we were turning the corner. Sara was sleeping well, not irritable at all, and smiling like there was no tomorrow. But over the course of the weekend, she progressively got worse. She constantly had to be held, throwing up once or twice a day. Wouldn't settle down and sleep until 3 in the morning, very irritable, almost worse than it was when we first got the diagnosis of reflux. So we took her in Tuesday afternoon.

Her head had grown over an inch in 3 weeks. That was the biggest concern for our doctor that sent us to the hospital. The reflux should have been improved, something must be wrong with the shunt. So, Jennifer takes Sara over to be admitted and have a CT scan done and x-rays. I make my way to the hospital and on the way to Sara's room I run into our Neurosurgeon who is surprised Sara was there. He came immediately to look at her and assured us she was ok, nothing serious. After viewing the results of the CT scan, he decided to go ahead and tap her shunt that night to check for infection and see if it was working.

He was pleased that their appeared to be no infection. And as of now, no infection is showing in the cultures. But he also noticed the bottom half of the shunt system (distillation (I think) - where the Cerebral Spinal Fluid is dispelled into the abdomen) was not functioning strongly. The top half where the CSF is absorbed from the brain was working great. His plan was to first make sure there was no infection - that was worse case which would involve the removal of the shunt system and a new one put in. That was our little 42 day trip to the hospital back in Sept-Oct. If there was no infection he wanted to check the drainage portion of the shunt system to make sure it wasn't clogged.

I stayed with Sara the first night and we have a pretty good night. She eats the last time at 6am. Then around 8:30 the nurse comes in, asks when she ate last, and then tells me not to feed her again. I ask - is something planned? Well she doesn't know, just don't feed her. I quickly find out that surgery had a 2pm scheduled surgery for shunt revision. We see our doctor at 2 who said we had been pushed back because of an emergency. He suspected the end of the shunt tubing had become clogged from protein deposits that occur naturally in your abdomen. He planned to removed them with a small incision and irrigation and motion. If that did not work, he would pull out all the tubing and put in new tubing from her neck to the abdomen. Thankfully, the first, least invasive procedure worked. The plan now is to watch her for a time (days?? weeks??) to make sure all is working.

Sara's second problem is gastrointestinal. Apparently all the Miralax we had been told to give her may have been making matters worse. We don't know what the real issue is, but the doctors think it may be neurologically related. So we will be off to see a gastro specialist in Shreveport soon. The neurosurgeon did see a spot on the CT scan that concerned him. He said it may be damage from the stroke she suffered at birth, that is now beginning to show up. This could be the cause of the gastro problems. We actually remember the neonatal pediatrician telling us that gastro problems could be neurological. That's all we know, thankfully we pray to an awesome God who already knows. We'll keep you posted so you can know how to pray.

Me and Jennifer I suppose are getting more battle hardened. This has not been as despairing as our last trip to the hospital. Certainly also because it is not as serious as an infected shunt. It's funny how quickly you go back into crazy hospital life mode, I guess it's like riding a bike. It sure is different now when they work on Sara and she just looks up at you with those bright blue eyes and long eyelashes wet with tears seemingly saying - Who are these people and what are they doing to me?

How can you pray for us? Patience, wisdom, peace, strength, opportunities to bear witness to the reality of Jesus Christ as our rock and refuge, our ever present help in a time of need. Pray we would be able to faithfully live out the truths about God that we know are true. Always pray for Abigail and Emma Grace, God has given them so much grace to understand at such young ages.

We are even more full of hope than ever before about Sara's life and future. As the neurosurgeon spelled out some negative prognosis' he said - "but remember, this is the baby that surprises us." From the time she was tiny and they didn't think she would make it through the day until now, she is the baby that surprises us. Thanks for caring, loving, and praying!

1 comment:

  1. What you said, God already knows...but He still wants us to rely on Him, so with that I pray for His blessing on your (and our) family and all the hands that will touch the entire family. He is our strength and wisdom. Tell Abigail and EG we love them and you and Jennifer be sure to let us know what we can do to make this easier for you.