"I need you to come back into the room so we can talk more about some additional results I just received from Hannah's bloodwork," said Dr.Meeker.... It was in that moment almost 3 weeks ago that I felt my heart skip a beat. I knew the night before when I found the Petechiae rash on Hannah from head to toe that something was really wrong. At the same time, Hannah has never been seriously sick and besides the strep throat the week before, there were no indications that anything was wrong. We would wait and treat symptoms until Hannah's body realized the strep was gone and it no longer had to fight her healthy cells. Simple... easy... textbook... We can handle this. As I followed Dr.Meeker back into the room that day it was obvious this was no longer simple. Dr.Meeker then began to explain antibodies and direct coombs. He headed in many directions with the results he was explaining.... left, right, up, down.... my head was spinning and as I responded to each new piece of information with "Ok... Ok... Ok..." I felt the lump in my throat grow larger as I looked at Hannah sitting so innocently on the table staring at me in attempt to read my body language to figure out what was going on. At some point while I was attempting to keep up with everything being thrown at me I heard two words that I had never heard before.... Evans Syndrome. It was in that moment that the picture began to change and I was no longer confident we could handle this. In that moment I began to feel my heart race as my breathing quickened and I did everything possible to fight back the tears. This can't be happening....
Fast forward to today... Almost 3 weeks from the day described above. 3 weeks of uncertainty, 3 weeks of blood draws, appointments, tears, prayers, exhaustion, faith, fear, anger, certainty, stress, pain, battle... 3 weeks to realize the diagnosis wasn't a fluke, 3 weeks to try and accept winning a lottery that approximately only 500 in the US have won. 3 weeks to realize that regardless of the mountains that we face, you are an amazing little girl.
My prayer today is not only for your complete healing but it is also that I will have the strength to keep up with your Faith. You have taken lemons and have made lemon-aid and I love you for that!
Today Hannah's platelets were exactly 10,000 (a definite raise from last Wed-Fri but only impressive enough that bruises aren't spontaneously appearing). Our insurance has agreed that if her platelets are less than 10,000 they will cover her IVIG without pre-authorization! That is AMAZING news and not typical of Blue Cross! John and I spent a significant time today speaking with Dr.Meeker in attempt to come up with a fluid plan for Hannah's treatment. To make an extremely long story short, after today's infusion we will watch to see how long her platelets hold. If she only makes it two weeks again then the next step will be to have a bone marrow aspiration/biopsy and consider starting Hannah on 4 day bursts of steroids when her counts are low. If her platelets hold closer to a month than we will continue with IVIG infusions and wait for the bone marrow aspiration/biopsy. We remain blessed that the antibodies on Hannah's red blood cells remain dormant and we are only fighting her platelets right now. Again if they are triggered it will change everything.
This year I will celebrate being a nurse for 11 years. Our pastor's wife continuously reminds me that God designed me to be the perfect mother for Hannah and today that couldn't be more true. I watched as they hung Hannah's IVIG and remember noticing the bottle held a significant amount more than was administered in the hospital the first time... as I helped Hannah into the bathroom, the nurse in me wanted a closer look at all of the paper work hanging on her IV pole so I snapped a quick photo with my phone to look at later and for blogging purposes lol! As we left the bathroom another nurse had commented on how large the bottle was hanging on Hannah's IV pole. During all of this little alarms were going off in my head but not loud enough for me to do anything. As we sat back down Hannah looked a little funny and I asked if she was ok. She said she was dizzy and felt like the room was spinning. Again an alarm but I excused it away as we had just gone on a walk and the side effects during administration can be pretty strong at times. As I began to look through the pictures I had taken that day I came back to the picture I snapped of the IVIG rate sheet.
IMMEDIATELY I noticed they had dosed the medication and was running it at a rate for someone who is 61.8 kg.... Hannah is not 61.8 kg, she is 61.8 lbs!!!!! I immediately jumped up and checked the sheet that was hanging on the pole to ensure they hadn't switched it since I took the picture and they had not! I calmly but urgently said "This looks like they have dosed Hannah at 61.8 kg, and she is not 61.8 kg... she is only 61.8 lbs!!" (61.8 kg is equivalent to 136 lbs!) Thank God the nurse did not question me and immediately stopped the infusion. Pharmacy arrived at the bedside immediately and before we knew it, there were a lot more people in the room. Fortunately I had caught it in time and because IVIG has to start of slow and they increase the rate every 30 minutes Hannah had only received an overdose for 15 minutes. I am so thankful that even though I was Mom at the time, the nurse inside never shut off. If I weren't there myself I would say it was almost unbelievable. Approximately 8 people missed the error and it was Mom who caught it... the Mom who was created for you Hannah Grace!
After everything had settled we began to explore our surroundings... For a Mom it's emotionally difficult to be in "The Chemo Suites." As a Mom you carry the weight of the situation surrounding you. As I looked around I realized there was definitely reasons to be thankful today. Although "Evan" is our giant right now, there are so many other giants out there that are so much bigger. The nurses and doctors continuously amaze me... they are inspiring in their compassion for the patients and families who come in for treatments. It takes a special nurse to work in Pediatric hematology/oncology. So grateful that this doesn't have to be a miserable experience.
They are in the process of a major renovation as they improve the suites and so they have allowed the kiddos to draw/color on the temporary walls... Hannah LOVED this!
There are special areas that the patients can go outside and so Hannah and I were able to enjoy some of the phenomenal weather today!
Hannah is also a Connect Four pro... :) So much fun and I honestly had to work to keep her from winning every time... No need for any freebie moves here!
And after an extremely long day we finally headed home to a house full of sisters, a Dad, and a Grandma all awaiting hugs and snuggles from us. Fingers crossed to make it a week before the next blood draw and until then we will make the most of our days that we can be confident Hannah's numbers have jumped!
After arriving home, even though we had been together for 8 straight hours, my dear sweet girl continued to snuggle me. She had a pretty severe headache from the IVIG and a low grade temp. Although I wish we had another reason for snuggles I'll take advantage of them while I can. I can't even almost remember the last time Hannah has fallen asleep in my lap.
While we sat in the chemo suites today, so Hannah could receive her IVIG, this sweet girl reminded me that regardless of what we are facing she has a heart to love others that is greater than most. By the end of the day both of us were completely exhausted from the day. In that moment Hannah began to ask if I thought she would make friends with the other kids receiving their chemotherapy. Kids who had lost their hair and were vomiting into their blue bags. Kids who were experiencing what most would consider to be their darkest hour. As we sat there for 8 hours today Hannah wasn't thinking about what has happened over the last 3 weeks or even about what was to come. As each hour passed Hannah began to shine brighter and before we knew it there were kids peeking around corners and hanging over the side of their bed to listen to and watch what Hannah was doing. Oh my precious sweet girl... I looked at you today and saw an inspiring strength that is beyond any strength that I have ever known. Your love and compassion for others has taken this moment to look past the negatives and see the many reasons that we don't need to be afraid. You are so strong Hannah Grace Daurer and your strength is higher than any mountains that we might face.
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