Monday, March 16, 2015

Nora's Platelet Problem--Part 3 & The End?!?

Wednesday morning we got up fairly early as we were supposed to check in for paperwork at 8:15. I fed Nora at 7:00am and hoped she ate enough to fill her up because she wouldn't be able to eat again until after any procedure had been completed. We were actually running quite a bit ahead of schedule so we stopped in at the hospital cafeteria to try and eat at least something...but it honestly wasn't much.  Then we headed upstairs to the Pediatric Hematology/Oncology Clinic for our appointment.

Of course I was pretty sick to my stomach, but I kept trying to be optimistic about the day & the possibilities.  First up was checking Nora's height, weight, & vitals and when we were about finished my parents showed up as were led down the hallway to an exam room.  The next order of business was drawing more labs & placing an IV just in case the doctor went ahead with the bone marrow procedure.  I stepped out of the room for the IV/labwork only to return a few minutes later and them tell me that they hadn't been able to find a vein so we had to wait on the Vascular Team to arrive with the doppler machine.  Of course I knew this would make everything so much easier, but this was also causing more of a delay.  Thankfully we only had to wait about 10 minutes for the team and after probably less than 5 minutes, they were done and the labs were sent off.

But then it was time to wait.  All the labwork was going to take about an hour to process and thankfully Nora fell asleep in my arms as we recounted the last 10ish days to our nurse for Nora's records.  Around 9:45ish, the doctor came in we began a very LONG conversation (over an hour) about what COULD be causing her platelet problem and also ruling out a lot of the things at the same time.  Nora was obviously getting restless as she typically eats sometime between 9:30-10:00 and we were already moving past that rather quickly.  Thankfully my mom took her out into the hallway and walked the entire time we were talking...and sent out a few texts asking specifically for prayer that Nora wouldn't become hungry.

As we continued to talk with the doctor, it seemed that the list of what it could be was infinitely long and only blood tests & a bone marrow test would truly begin to rule out most of what he discussed.  I honestly expected to have a conversation and for the doctor to give us a plan of action for treatment.  And he did...sort of.  Except he gave us the choice...we could either try another round of IViG, which is the same treatment we had in Springfield and hope that it worked (but in his best guess only about 25% of patients respond to a second round of treatment if they didn't respond the first time).   Or...we could go ahead with the bone marrow test to rule out a HUGE amount of the more serious conditions on the "it could be" list.

The doctor truly gave us the choice and I (along with Hubby) felt a huge weight on our shoulders.  The IViG was truly the easiest choice, but honestly there weren't very good odds that it would work and we could end up back in KC next week for the bone marrow test anyway.  Or...we could CHOOSE this pretty serious, but quick (15 minutes or less) bone marrow extraction and have the ability to know for sure whether or not Nora's platelet factory was truly functioning properly.  It was pretty much at this point that the tears began to flow and I don't think they truly stopped for the next 3-4 hours.

Hubby & I weighed the options, but truly, we already knew what we needed to do.  We had driven the 3 hours to KC with the expectation that a bone marrow biopsy was a strong possibility & while our baby would be in some amount of pain, we also knew it was the best way to know for sure what was wrong with our baby girl...or at least to have some peace about what it wasn't.  And so...with tears streaming down my face I signed the release form for the procedure and also for the medication they would put in Nora's IV for "conscious" sedation.

And so at about 11:30, we made the decision...and the waiting began again.  With her platelet count being so low (it was at 7000 that morning), the doctor wanted to give her a platelet transfusion to avoid any complication with clotting and that took at least 30 minutes.  We also had to wait for it to be nearly 6 hours after Nora had eaten before they could do the procedure...6 hours.  For a 3 month old who during the daytime eats every 3-3.5 hours.  Remember those prayers my mom was requesting about hunger?...they worked.  Because as tired and as fussy as Nora was, I truly don't think it was from hunger, she was just sick & tired of people messing with her.  We flooded our phones with group texts asking for specific prayer between 12:30 and 1 as that was the best guess of when the procedure would officially happen.

I cried more tears & we prayed more prayers.  I held Nora in my arms and Hubby & I prayed over her & told her that "God's got this" even though that was much easier said than truly & fully believed.  And at just a few minutes before 1:00 (exactly 6 hours since Nora had last eaten), I handed my baby girl off to one of the nurses and walked out of the room.  Hubby stayed with her for every moment and my parents convinced me to pass the time by making a quick walk down to the cafeteria.  Close to complete breakdown at every moment, I ate a few pretzels and prayed like I've never prayed before.

And then the text came...

Just as the nurses had promised, she was done almost just as quickly as it had begun.  And she was fine...exhausted, but completely fine and her vitals were all completely stable.  This time I cried happy tears, and tears of rejoicing over the mighty God we serve and how he protected my sweet angel during a procedure that sounded so scary.  

They left her alone for the next hour, allowing her to rest and simply just checking her vitals which remained stable the entire time.  And about 2:30 they decided to rouse her a little bit to see if she was interested in some real food from Momma...and she sure was!  I nursed her and they removed her IV and we gathered up our things to head home.  While the test results were still outstanding, the most invasive part of things was now in our past and we could come home.  

Nora of course slept soundly almost the entire way home & we stopped at my in-laws house for a quick dinner and to see Elyse.  My precious mother-in-law volunteered to keep Elyse over night so we could all get some much needed rest, and I was so thankful for that.  Hubby & I crashed in bed basically as soon as we could...and except for a quick feeding for Nora about 1am....we all slept soundly the entire night.

While I was nervous for test results to come in on Thursday, I was also incredibly at peace and just so thankful to have that procedure behind us.  I called our nurse about 3:00pm and there weren't results back yet...but within just a few minutes, she called back to tell me that preliminary bone marrow test results were NORMAL!!!  Nora's bone marrow is functioning properly and creating platelets like it should...but something is happening during the circulation process.

We expect many more test results to come in over the next few days & even weeks, but from what we understand, any other problem causing low platelets is completely treatable.  Honestly, the doctor admitted that we may never know exactly what's wrong...but that Nora could likely grow out of it and we simply treat for symptoms until then.

Thursday evening I made dinner for my family.  And we went for a walk.  And we played outside.  And I've never been so relieved to have a normal night at home.  God is so good, and he is so faithful.  We had hundreds of people storming the gates of heaven for us & with us on behalf of Nora and there will never be any way to repay them for lifting us up as they did and are continuing to do. If you were one of those people...thank you.  Two simple words don't seem like enough, but it's all I can say...and know that I will repay the favor one of these days if the need arises! Hubby & I were both flooded with peace that could only have come from above and we are eternally grateful for all the prayers.
And so...for now, we wait.  And watch.  And while an official diagnosis would be would an un-diagnosis with our little angel remaining perfectly healthy and simply growing out of this low platelet issue.


Hannah said...

Oh goodness. Well first, praise the Lord that her tests came back with nothing serious! I know I've kept you all in my prayers, so I'm so glad to hear how you [and Nora] are doing. But wow, what a journey and process to get there. I can't believe she went six hours between feedings [longer I suppose if you include the procedure time]. Poor baby, but thank the Lord she did well between feedings. I'm so glad the procedure went well, I would have been a mess and on my knees praying the entire time too! It's wonderful to hear that you are all at home again, I'll pray that everyone stays healthy and that she continues to heal/outgrow this! Enjoy your sweet girls!

Kate @ Daffodils said...

I have been following Nora's progress on insta but was glad to come over and read more. i am glad the ruled our the worst even thought that was a tough decision for you to make! I will pray that there are few bumps ahead!