(Sorry for all the details, but this is the easiest way to remember them..., Part 1 is here)
As Nora napped on Wednesday morning, and Elyse played in her playroom, and I emptied the dishwasher...I was flooded with gratitude for the simple life that we live. And I continued to pray that, as could be very likely, this was a one-time occurrence that hopefully was cured once and for all.
We were discharged with the understanding that we would head back to our pediatrician's office for a follow-up appointment and labs on Thursday morning. We did as we were told and after the labs were drawn and we had a long conversation with our pediatrician...we got the bad news. Nora's platelet count had dropped from 19,000 at discharge to 15,000 that very morning. At that point, our pediatrician suggested that we most likely would need to visit a pediatric hematologist...as her case was just so incredibly rare. We were reassured again as all of her other lab numbers were completely perfect, but those platelets at such a low point was certainly a problem.
I had another long conversation with our pediatrician and we talked about all the possibilities for treatment if and when we went to Kansas City. Worst case scenario: The dr. might decide to pull a sample of Nora's bone marrow in order to test it. I was freaked out by this of course...but this was worst case scenario and I wanted to be as prepared as I could for all the possibilities.
We awaited a call from the dr's office at Children's Mercy on Friday & they decided to have us run labs one more time before making the trip to Kansas City. Those labs were run Monday (March 9) morning so we lived our weekend as normal as possible. We even took a pre-planned overnight trip to Kansas City for Disney on Ice (full recap to follow soon). We went to church and to small group, all the while paying close attention for the appearance or arrival of any new bruising or spots.
Monday morning Hubby took Nora to the lab for another blood draw, and I just had a feeling things weren't going to come back well. And as expected, her numbers were at 8,000...lower than they were just a week ago when we first started this whole process. So the ball began rolling and we were making plans to visit Kansas City yet again. I had a long conversation with a nurse and she did an excellent job of relieving a lot of my fears, but also being straightforward about what was possible. One of the goals during our quick trip was to figure out what's causing Nora's strange numbers...but more importantly we need to further rule out what's NOT causing them. Unfortunately, she also informed me that there was a strong possibility that she would have a bone marrow biopsy just to further confirm that this was simply a platelet issue and nothing else. Again...ALL of her numbers have remained completely normal & perfect throughout the last 10 days, and so we were confident that we just have a little medical mystery on our hands.
However, having that confidence in your heart & believing it with your head can be two very different things...especially when your mind starts playing all the what-if games and starts to consider all of the awful possibilities. Arrangements were made in Kansas City & we were blessed to be offered a place to stay at the Ronald McDonald House overnight on Tuesday night. Our appointment was scheduled for first thing on Wednesday morning and according to the nurse, if things all went as planned we should be done by 10 am, 11 at the latest. There was a chance they would want to keep us overnight for test results, but it was also extremely possible that we would be able to come home.
While I was certainly concerned about the test results...I was just as concerned about the test itself. More lab work and a possible bone marrow biopsy are not tests to be taken lightly, and this momma was nervous. From the start of this whole process, I had begun asking our family & close friends to pray for Nora...but on Monday night as Hubby & I were packing, I activated our prayer army.
I posted this picture on Instagram & Facebook and the prayers began to flood in. Honestly, words can't describe how much love & encouragement we received from friends, family, and strangers. We were placed on prayer chains all over Missouri and people from Michigan to Florida to Washington D.C. and beyond were praying for our precious girl. I've prayed for people I didn't know before, but I've certainly never been on the receiving end of things. While the tears seemed to flow as if they were an autopilot, I also felt an overwhelming sense of peace...peace that passes understanding.
Hubby & I worked until 2 pm on Tuesday and then headed out. We made arrangements for Elyse to stay at home with Hubby's parents, and my parents left after work on Tuesday to come up for support. We checked in to the Longfellow Ronald McDonald House after dinner and let me just say...what an amazing facility! Nora was sleepy so she & I cuddled down while Hubby unloaded our car. We quickly got Nora settled down for the night and then we tried to get some sleep ourselves. Certainly easier said than done with the day that was to follow....but the prayers must have been working as we all managed to get just enough sleep to be functioning on all cylinders for the busy day that was to come...
3 years ago