Backing up to Wednesday afternoon....the Anesthesia nurse from the U called to go over Danielle's health history the past few weeks. I had to tell them of Danielle's recent bout with RSV. I made sure and told the nurse that she was cleared by her Pediatrician on Monday the 28th. She was totally fine with it and we moved on.
Thursday morning my phone rang. It was our doctor's ARNP (Nurse Practitioner) she was regretting to have to inform me that Danielle's surgery must be postponed. My initial reaction, 'WHAT', 'NO WAY', 'HOW CAN THIS BE', 'WHY'? I had SO many questions. She informed me that the head of Anesthesia went down that morning and spoke to our Neurosurgeon directly and informed him of her concerns putting Danielle under after her recent RSV diagnosis. Our Neurosurgeon relayed she had been cleared by our Pediatrician and since she was cleared he was ok proceeding with the surgery. The Anesthesiologist said, 'NO'. Their ' policy' is she must be clear for a minimum of 4 weeks after she is cleared before they will put her under unless it is an emergency. I was LIVID. Mostly LIVID because we were walking out the door and shouldn't the Anesthesia nurse have told me this yesterday or more so checked into this after the information I gave her on the phone maybe should have raised a red flag? I was so mad that the ARNP directed me directly to Anesthesia to take it up with them.
Sure enough I got the exact same doc on the phone who had met with our Neurosurgeon that morning. To say that she was rude is quite a bit of an understatement. I went rounds with this lady on the phone for a very long 10 minutes. Words that came out of her mouth were EXTREMLY inappropriate. I kept saying, 'we are coming down for pre-op appointments will you PLEASE just examine her before you make your final decision to halt surgery.?' and no, NO was the answer I kept getting. I was devastated.
Not only did we have to relay this news to our family who was planning on starting that very DAY in caring for Dylan, but we had to relay this information to our daughter and try and make sense of it ourselves also. We obviously want the VERY best and only the best for our daughter and we NEVER would want to risk anything at all. But let me tell you 6 1/2 weeks of anticipation, planning, nervousness, tears, worry, fear and more planning all went out the door. It sucked. Brad and I both were emotional basket cases. I had to come home and collect myself and calm my husband before I could even think about returning to work. Not to mention explaining to our little Dylan who was looking forward to over a week with Grandpa and his Holub Grandparents and Uncle, just why he wasn't going now. He took it surprisingly well and is excited to do that again very soon.
SO, this further complicated our care plan as far as daycare, school, therapy, in home nursing care, our job schedules etc. It is what our daughter needs and 'begging' for her to have surgery today really sounds funny and a little bit selfish I realize. But here is the deal, Brad and I have had a lot on our plates. Our children have had a lot of anticipation themselves and to tell your child in the first place they are having brain surgery is NOT a fun conversation to have. And then when your child fully understands you but she can't communicate to you to ask the questions we know she has.....it tears your heart out and rips it to pieces. Then to tell her, just joking baby, no surgery today?? What 4 year old is going to understand that? Our heart is breaking and we are SO ready for our daughter to be able to just...be...a....kid.
I was hoping to have a new surgery date as of today, that did not happen. The surgery scheduler is trying really hard to get Danielle in before April, which is technically her surgeon's next available surgery time. He prefers to not do surgery's on Friday's but she is working to get us in at the end of February, very beginning of March. So now we wait, patiently. We take advantage of this time with our girl, trying extra hard to keep her healthy in order to prevent further set backs. We remain strong for her and continue to thank god for each day. We are truly blessed and even though yesterday seemed like one of the worst days of our life in a long time.....we sat back and realized, no, this isn't bad, it is happening for a reason. We need to learn to calm our anticipation even tho it is so so hard.
So hopefully Monday we will have another update, a positive one, at that, with a new date to mark on the calendar, a date to get thru and move forward with our beautiful girl. Please pray for our sanity, I am fairly certain that we need it :-)
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