DAY +2

10 15 2014 14:24 … an other moment in time that I will never forget. The day’s details etched in my brain as it is the day that Abbigail received her stem cell transplant.

I still can not believe it at times. after so many days, months and years of battling beasts far larger than most could imagine, after experiencing pain no child should endure and after so much hope and faith was lost, she received the most anticlimactic but exciting 15 minute infusion! Yup, that’s it; 15 minutes is all it was, after months of preparations with chemos, surgeries conditioning treatments and hospital stays, 15 minutes could have changed her life forever…not to mention saved her life from the trauma of conditioning.

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Day ZERO itself was an exciting concept for me. I was full of hope, and Abbigail had no understanding of why it was so momentous to me, the nurses and her Transplant doctor. The nurses and I scurried all morning to prepare Abbigail, our belongings and our room. Abbigail’s counts had dropped significantly over night, she went from 7.1 to 0.6, needless to say, she slept through her morning, giving her body some much needed rest while everything around her was about to change. Once she was “sterilized” and our things were too, we moved to our new home; an isolation room prepared for transplant patients that are at a significant risk of life threatening complications due to immunosuppression. she technically had no ability to fight anything in addition to possessing several additional risk factors for complications. This is her bubble, or as her and I now refer to it as, her new Princess tower, like her favourite Princess Rapunzel, being protected from the dangers lurking just outside the door. She has quickly adapted to the changes quite surprisingly actually. She can not leave the room, nor can she have visitors, she can no longer eat foods prepared by anyone but me at the moment or the special meal train for bacteria free diets here, which includes no more take out, fast food or snacks from the cafeteria. She also has to be cautious with any fresh food.

Mentally Abbigail is doing amazing, far beyond our expectations at this point! Physically though, Abbigail is causing a lot of distress to our physicians, specialists, nurses and me!

Day zero, post transplant hour, Abbigail began to show signs of adverse reaction to the preservative used to store her stem cells. Her blood pressure rising and her heart rate plummeting, she kept the Fellow, nurses and me on our toes all night long. Extreme caution was taken, safety measures put in place, boluses, and medication changes and high alert watch until her heart rate and blood pressure started to come within “acceptable” range. By midday on Day +1 we saw improvement however because we still weren’t sure if the danger was gone, we kept her attached to all of the machines for further monitoring and lucky we did because it wasn’t long before her vitals began plummeting the other direction. Despite her alarming vitals, she was otherwise in a great mood considering and she even tolerated some clouning around with A LaBoo the hospital clown and some painting with a Camp Ooch volunteer. She tired easily though and after speaking to the dietician and doctors we had Abbigail begin IV feeding to allow her body to gain some strength to fight! She was attached to more lines, now 6 IVs hanging from her small body, and given lipids and essential nutrients to compensate for her lack of eating. Once she fell asleep, her heart rate steadily rising and her blood pressure continued dropping alarmingly low, and so she was again on high alert, vitals every 10 minutes, no sleep and people coming in and out of her room the entire night.

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I remember just giving birth to my kids, didn’t matter if it was William, my first born or Madden, our third baby, I distinctly remember not sleeping that first night they were born because I was watching their chest rise and fall as they breath because I was fearful they would stop breathing in their sleep. I think all moms can relate. Most would also agree that although the worry never goes away, you find yourself at some point not checking as much as we realise they are ok. Well last night I watched, I felt and prayed her cheat would continue to rise and fall again and again and again. This morning we called the intensive care unit team to assess abbigail and be sure we are doing everything we can for her right now to keep her safe. Our fear is that these alarming heart rate and blood pressure changes could be caused by an infection and so we’ve put her on 5 aggressive antibiotics, antivirals and antifungals to be profalactic with any possible infection.

She’s currently trying to rest as I type, she is uncomfortable with all of the wires, feeding tube, monitors and electrodes attached to her body and skin and we’ve had to start her on a form of morphine to alleviate some pain associate with mucusitis; which is the breaking down of cells within her GI tract causing painful sores to develop from top to bottom.

I am praying for a comfortable night for my sweet girl, I am holding onto faith that the next moments will be easier than the last. I hope that her team of doctors, and their are many now, can locate the source of possible infection and give us answers and a course of action quickly. She is at the mercy of far too many variables right now and although she remains stable this hour, I’ve seen how quickly things change when these kids, these babies are so weak.

Thank you to everyone once again for your kind words of support and encouragement, for your prayers and for the many donations that have come in this week. These all make the burdens that much easier to bare. Thank you for sharing her updates and YouCaring page.

If you wish to help directly too, you can click on Abbigail’s {Fundraising} page here for details on the many ways you can help or contribute!

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