Monday, October 1, 2012

The Test Results and Indecision

NICU Day 6 (Saturday, Sept 29):
Not our greatest picture day - but it was 11 pm at night and I remembered that we hadn't taken our camera over to the NICU at all that day and so Oliver snapped a quick photo with his phone.  I wanted to have a picture from everyday in the NICU and this is all we have for the 29th.  Don't worry - there are plenty more pictures coming.

Back to the story:  Oliver and I slept well feeling confident that her spinal fluid looked visually clear.  We came to the NICU as soon as it opened at 7 am and fed and held her and were having a relaxing morning.  Dr. Liu had been in the NICU in the middle of the night for some emergency work on another baby and so she wasn't going to be in to consult with us in the morning.  I asked the nurse if she could share the results from her spinal tap and she couldn't - so we settled in for a morning of waiting.  We weren't anxious - it was just a calm nice morning.

Dr. Liu arrived around noon and came in to our suite to chat with us.  Ideally there would be no white blood cells in her spinal tap - and there were 15.  0-5 is the normal range and 6-14 is the buffer that is acceptable for error - we had 15 white blood cells!  How discouraging!  It wasn't clear cut that there were hundreds and we would know just what to do - and the result wasn't low enough to be certain that she doesn't have meningitis.   Dr. Liu called to consult with the infectious disease specialist at Primary Children's Medical Center and they suggested that we run an additional test to see where her CRP results were (C-Reactive Protein which is a test that measures inflammation).  Without having a baseline CRP test or a baseline spinal tap it is just very difficult to know what might have been 4 or 5 days ago but at least we could obtain a clear picture of today.

Oliver and I consented to the blood draw for the CRP test (and our consent wasn't needed but we really appreciated feeling like we were having power to help make some decisions and that we had been fully informed before they kept going).  Claire had just eaten and out of concern for her comfort and sleep they decided to do the blood draw before her next feeding about 2 pm.

The blood work was sent to the lab (thank goodness they're open on the weekend) and the results were back by about 4 pm.  In the meantime, Addison had woken from her nap, and she came up to the hospital to have late lunch for mom/early dinner for herself.  It was the first time that I had walked to the hospital cafeteria - it was actually the first time I stepped foot out of the NICU/postpartum area of the hospital.  I was feeling a little more confident to venture down an elevator and through a maze of hallways - progress I would say.

While we were eating, Dr. Liu called to tell us that the CRP results looked wonderful.  She came back with a 1.7 and anything under 10 is normal - so she was finally well within the level of acceptable and not so borderline.  This result showed that she no longer had any inflammation - and she may have or may not have - that result is one we will never be able to obtain.

We finished eating, said goodbye to Addison and my mom, and went back to the NICU to consult with Dr. Liu.  We reviewed the results again and then Oliver and I had a decision to make - we could decide that 7 days was long enough for her to be on antibiotics and would fully cover the effects of pnemonia or we could have her on a 14 day course of antibiotics because her white blood cell count was at 15 and that length would fully cover the meningitis concerns.

We will never know her original level of white blood cells because a spinal tap wasn't performed in our early days.  We will never know her baseline inflammation levels from CRP tests because, while ordered, they weren't done and several days of levels would be needed for comparison.  We will never get back what just wasn't done.  You would think that after 6 days of antibiotics her white blood cell count would have gone down but was it 25 white blood cells on day one or 45 or might it have always been 15 - we just won't ever know.  So how do you decide what to do?

Funny enough - the Lord works mysteriously through channels we just don't recognize.  I had been on bed-rest since late August and had plenty of time to lay around.  My sister generously offered to get anything I might want from the library and so she picked up some things she thought I would like and she said she would put holds on things I'd been interesting in reading.  The day she called to volunteer to be my library chauffeur I had been checking up on people's blogs.  A friend of mine (more of an acquaintance that I continue to blog stalk) had just mentioned in passing that while she was at Bear Lake she had read a good portion of a new book called Take the Risk by Ben Carson.  She loved it.  It wasn't a recommendation - it was just a passing comment and I didn't have a clue what the book was even about - and I text my sister and asked her to add the book to her library cue for me.  It wasn't a thunderous voice that spoke to me, just a fleeting thought that I should read that book - and it came the day my sister - not trying to be spiritual or one of God's messengers - volunteered to go to the library and was just being sisterly.

She brought the book by my house a few days later and having just finished another I started to read it.  Well - it is a wonderful book - and I will fully recommend it to all of you - and I finished it in less than 24 hours.  Ben Carson is a world renowned surgeon that gained his "fame", if you will, successfully being the first to separate conjoined twins that were joined at the brain/head.  His book is about risk assessment and how he has journeyed and been okay with making decisions and doing procedures that some would never even consider.  He is a very Christian man and there are religious undertones, medical stories, and in some respects it reads like a business book about risk management.  Reading his book taught me how to assess risks without emotional attachment and be okay with the outcome.

And here I was now, sitting in my hospital room, trying to decide what we were going to do.  I thought of his book, the steps Ben Carson explained, and Oliver and I stood up to the whiteboard to follow Ben Carson's explained method.  We made four categories -
- What are the advantages of 14-day treatment
- What are the disadvantages of 14-day treatment
- What are the advantages of 7-day treatment
- What are the disadvantages of 7-day treatment
Oliver and I mulled over the list - had dinner - went to the NICU for two more feedings - and his parents came up.  The night NICU staff were very accommodating to our family again and, because we weren't sharing our NICU room with another baby or another family, they let his parents both come into the NICU so that we could be with Claire but also talk through our options.

I had decided what I wanted in the moment that Dr. Liu explained our options and left the decision to us - but Oliver was much less decided and torn.  Here in enters a gospel principle that I live by and fully believe - Oliver is my husband, he communes with God and receives inspiration for our family, I will support and follow him NO MATTER WHAT.  I know that, after hearing my opinion and feelings, Oliver has the authority to weigh it all carefully and be inspired for our family.  Does it mean that I would feel comfortable if it isn't the decision that I want - not necessarily.  It also isn't a blind following where he decides without us consulting as a couple and discussing and him really hearing me.  But after he understands my perspective, hears my concerns and feelings, and knows where I'm coming from - I have no trouble putting my trust in his ability to receive inspiration for our family.

This might not work for every couple and might seem odd from the outside - but it is how I understand my covenant to Oliver and to the Lord.  I love the assurance that this brings to our marriage - the unity that it creates - and the peace I feel following my husband.  After many conversations, opinions from several different people (doctors, nurses, hand-washing people that mentioned things in passing, and our families) we decided to go to bed undecided.  Ultimately, the decision was ours to make and since we were only on Day 6 of pneumonia treatment we didn't have to decide in that moment - we could take our time. 


Erin Hall said...

You have such a great attitude! These decisions are never made easily, but no matter what, you will always make the right choice. Because you and Oliver are her parents and because you have faith. We went through something similar with our 3rd child. it was a very difficult time for us. I always wish I had something inspirational to say at these times but I always fall short. Keep finding that sliver lining, know you are not alone. My thoughts and prayers are with you, Claire and your family!

Jase & Natalie said...

I'm so happy to hear that Claire has a coming home date. The NICU experience is honestly one of the hardest time I've had in my life but also a time I felt so much love and support from family and friends and the Lord especially. My heart goes out to you and Oliver during this time. One positive thing is once sweet little Claire is home you forget how frustrating and hard the experience was. :) are you home from the hospital or are you staying there until she comes home? How are you healing from your c-section? Please let me know if I can help you with anything.