Tuesday, March 10, 2015

A Scary Start to March...Nora's Platelet Problem

I consider myself a pretty level-headed momma.  I don't typically get worked up over small colds, or stuffy noses, or bumps or bruises...chalking most of it up to just being a part of childhood.  I'm also a pretty observant momma.  I notice when the poop changes color, or when there's extra boogers in their noses, or when a bump appears that I haven't seen before.
So...last Friday when I noticed a few spots (not bumps) on the back of Nora's head, I mentioned them to my mom.  There were several of them, they weren't raised, and they looked like tiny little, pin-point, bruises. We both agreed that just like with Elyse they would probably go away soon and I didn't think anything about it.  Saturday came and went, same spots, no change.  Sunday came, and as Hubby was holding her, he mentioned that he thought there were more spots than before.  And he was right.  And after her mid-day nap, I also noticed a small cluster of spots that were underneath her left eye.  Again, these were spots...not bumps.  Not a rash.

And so I did what I tell every single first-time mom to never do.  I Googled it.  I Googled "pin point spots on back of baby's head."  And to be right honest, the results were terrifying.  As they always are when you Google a medical condition for your child.  I have a firm belief that the majority of time when you Google something about a medical issue, it's almost always cancer...and you are almost always going to die.  I don't say that to be insensitive, but most of the time it's the really bad stuff that people actually talk about.

Anyway, hubby was outside shoveling the driveway from our most recent snowfall and as soon as he walked in the door I told him that he needed to talk me off the wall because I was literally about 5 minutes from taking Nora to the emergency room.  The term I had found for the spots was Petechiae.  Petechiae is normally a symptom of an underlying issue...and those issues are really even too frightening for me to type out.  But let's just remember...when you Google anything...cancer & dying.  I was freaking.  So, Hubby agreed that we would take Nora to our dr's office first thing on Monday morning to have the spots checked out.  And in the next few hours I had truly convinced myself they were nothing...but the nagging feeling remained.

Our dr's office has urgent care hours early in the morning so we didn't get to see Nora's pediatrician but one of the other dr's in the office.  She examined the spots and while she didn't seem extremely concerned, she wanted us to go downstairs to the lab for a CBC (complete blood count) just to be sure.  Of course labwork at a hospital is a LONG process, but we finally got the blood draw completed and I took time in the lobby to nurse Nora before we headed home.  Before we left, I got a call that the lab wanted to redo the draw because Nora's platelets were extremely LOW and they really didn't think they could be right.  So...back to the lab we went for another draw, another bandaid, and another needle stick for my precious baby girl.  The lab tech asked us to wait a few moments to make sure the numbers seemed accurate, and after getting the thumbs up we headed home.  We dropped Nora back off at our home (where my mother-in-law was watching both girls for the day) and we headed to work.  I think we walked in the office around 11:40, to be there for just a few moments before it was time for the office to close for lunch.  As we were walking out the door, my cell phone rang and I recognized it as a call from the dr's office.

And that's when my world fell apart.    Nora's pediatrician was on the other end of the line, and in the calmest way possible she informed me that Nora's platelet count was dangerously low and that it was low enough they wanted to admit her into the hospital.  My three month old baby girl.  Admitted into the PEDs ward of the hospital.  And we were to get her there as soon as possible.  Through freaking out & tears, we drove back home, packed a few things, made arrangements for Elyse, and loaded my innocent baby girl back up into her carseat for a journey we were certainly not expecting to make.  On the way Hubby & I either sat in silence, or we made phone calls and I texted to as many people as I could to pray for our baby girl. Because my mind was going a hundred miles an hour and I was only fearing the worst possible outcomes.

As our pediatrician had told us, they were waiting on us.  The nurse tried as best she could to get us settled, went through the process of admitting Nora into the hospital, and then we waited for the hospitalist.  (Our hospital has drs on-call that service the hospital only, and typically your specific dr defers to them for hospital treatment).  The hospitalist happened to be a doctor that had treated my grandma a few years ago and while he didn't remember her, my mom remembered him & he was amazing.  He sat down in front of Hubby, who was holding Nora, and went through a laundry list of questions & concerns.  He looked at her labs, looked at her Petechiae spots, and looked back again at this baby who appeared COMPLETELY healthy.  He was truly perplexed as to why this seemingly perfectly health child was in the hospital.  And I admitted to him that I might have Googled those spots and become terrified of the possibilities...

Nora melted him with her grins and giggles and then we developed a plan.  Nora's platelet count was at 10,000.  Critical Low is 30,000 & Normal is actually above 150,000.  Obviously our little girl had an issue.  But only that issue.  All of the other labs came back completely normal, which was a relief since that ruled out the really scary stuff that had showed up during my Google search.  Our doctor consulted with Children's Mercy in Kansas City & they decided to treat Nora for ITP (idiopathic thrombocytopenic pupura).  However, the problem is that Nora would be one of the youngest, if not THE youngest patient to be diagnosed with this disorder as it normally affects children from 2-6 or older.  The treatment plan was a 4 hour IV infusion of IViG which would hopefully boost Nora's body to start making platelets again.  Her infusion was started around 4:30 and ended approximately 4 hours later at 8:30.  I spent the night in the room with her while Hubby went home to get some sleep.  Nora & I actually slept pretty well as our night nurse only came in a few times to check Nora's temp.

Both our night nurse and our day nurse (who we had both Monday & Tuesday), seemed to think that we would be released fairly quickly & be home by noon.  Well...the doctor had other plans.  Because of Nora's age, and because platelets regenerate so slowly, he wanted to keep us until late in the afternoon to run one more set of labs.  If Nora's platelet count showed significant improvement we could go home..and if not, we had to stay.  And so the wait began...we prayed that Nora's counts would be high enough for a discharge and then we prayed even harder after we received a hospital roommate at around 2 pm.  They were nice & all, but we were tired and ready to go home, and those hospital rooms are not big enough for two families!

There were a lot of timing issues that came into play with this as well, which meant that at around 5:30 I met my in-laws in the hospital parking lot to take Elyse home to spend the evening with my aunt.  We were hoping & praying that all four of us would be able to spend the night at home, but if not, Hubby would come home and stay with Elyse while I stayed again at the hospital.  While I was at home with Elyse, Hubby called to say that her platelets had come back with enough improvement for discharge...we just needed one more test to come back negative.  Her platelets were at 19,000 which means they had almost doubled in less than 24 hours!

I stopped to pick up dinner and headed back to the hospital...and imagine my elation when I walked in to see them removing Nora's IV and our night nurse (who was our favorite) telling me..YOU GET TO GO HOME!  I've never been more excited and more relieved.  We quickly packed our bags, loaded up Nora, and we were home in time for Nora's evening feeding at 7:45.  As I nursed her before bed I cried tears of joy, tears of stress, and tears of gratitude to God who had answered all the prayers that had been asked on our behalf.

Those 36+ hours were exhausting and trying, and this momma learned that she had some inner strength that could only have come from God.  I know that so many momma's spend weeks, and months in the hospitals with their babies...and I can't even fathom how difficult that must be.  I spent one night in the hospital with my baby, hooked up to one IV for only 4 hours. And so to you momma's who spend weeks in the hospital, with your babies hooked up to wires too numerous to count...I pray for you.  I pray for continued strength.  I pray for peace and for wisdom.  And I pray for God's healing hand to fall on you & your baby.

To God be ALL the glory for answering our prayers & keeping Nora safe...but our journey isn't close to being over!  To be continued...


Melanie said...

I can't even imagine how you must have felt!! Will be praying for you guys!

Susannah said...

Oh no! How absolutely terrifying!!! I'm so glad she's doing better! I'm praying for your family!

Hannah said...

Oh my goodness, how scary! Praise the Lord she was able to be discharged when she was. I can only imagine what it would feel like to get that call and be in your shoes, I'm so sorry! I will keep you, your family, and especially little Nora in my prayers!

Hannah said...

Oh my goodness, how scary! Praise the Lord she was able to be discharged when she was. I can only imagine what it would feel like to get that call and be in your shoes, I'm so sorry! I will keep you, your family, and especially little Nora in my prayers!