The day turned out to be better than I had expected. The doctors decided to replace Reece’s Hickman line (placed on the chest; where all his lab draws and IV meds are given) with a PICC line. A PICC line, like a Hickman line, goes into the heart, but it is placed in the arm, versus the chest. PICC lines are not typically used with BMT patients as they are not intended to be as long-lasting as Hickman lines and they are not used for administering chemotherapy. Often times, however, if the kids are post-chemo and they tug the Hickman line out, they will use a PICC line as a replacement.
Additionally, Reece did have his bone marrow biopsy today. Had the line not tugged out, the biopsy would have been postponed, so I am glad that it all worked out the way it did. The biopsy results will take probably two weeks to get back, but it will tell us about the success of transplant thus far (i.e. if Reece is still in remission). It’s a bit nerve-wracking, but since we didn’t do the Day +60 biopsy due to his lungs, I have been antsy to have this one done. The blood has revealed 100% donor, but the marrow is where the real answers lie.
Reece’s breathing looks really good. The doctors want him to preventatively stay on bi-pap for one more night. Assuming his numbers continue to look as good as they have the past couple of days, they will take him off of bi-pap and see how he stats. They want to give him 24 hours off of oxygen to see how he does. From there, they will make a plan so that when he is sent home, we are all comfortable with the oxygen plan and equipment we will be using. The hope is that he will be home again this week. Please pray that he can be done with oxygen. That when he comes off of bi-pap he is strong enough to breathe on his own both awake and asleep.
These last few days have left me weepy. Between the postpartum hormones and Reece’s latest hospital stay, I have felt very low. The hardest reality for me is the dichotomy of having this blissful experience of adding a new baby to our family contrasted with the depressed feelings of knowing the suffering of my other child. The joy contrasted with the sadness reopens the wound and sharpens the senses that have been somewhat dulled over the past several months. In essence, I have felt robbed of a time of life that we should be fully enjoying; we should be given a carefree time when our children are young. And our children, most definitely, should not be dealing with suffering and struggles. And then I have realized that it is so easy to fall back into this feeling of entitlement; that we should be given these things, but we are not. In fact, many people are not given this carefree feeling that I was expecting would be ours. It becomes very confusing…I want to be mad about my perceived loss and I do feel like something has been taken from us and yet I know in my heart that it isn’t the right mentality. That is, it feels wrong to me to assume that everything should be so carefree…carefree was never promised to anyone.
So, in light of that, I decided to get caught up on some devotional reading last night. The devotional I have been reading from is entitled Streams in the Desert. I had several people give me copies prior to Reece’s hospitalization and I would highly recommend it if you are walking through something that is particularly difficult. Job’s suffering has been an ongoing reference to me these many months and as I was reading through several days of devotions, one excerpt struck me in such a way that I found it encouraging. Interestingly, it is from April 22, which is my birthday. This next passage is a direct quote from my devotional:
The pain would be removed from many an agonizing trial if only I could see what Job saw during his time of severe affliction, when all earthly hope lay dashed at his feet. He saw nothing but the hand of God–God’s hand behind the swords of the Sabeans who attacked his servants and cattle, and behind the devastating lightning; God’s hand giving wings to the mighty desert winds, which swept away his children; and God’s hand in the dreadful silence of his shattered home.
Thus, seeing God in everything, Job could say, ‘The LORD gave and the LORD has taken away; may the name of the LORD be praised,’ (Job 1:21). Yet his faith reached its zenith when this once-powerful prince of the desert ‘sat among the ashes’ (Job 2:8) and still could say, ‘Though he slay me, yet will I hope in him’ (Job 13:15). –J.R. MacDuff
The Lord gave us this new baby and the Lord created our eldest child knowing that his health would be taken from him at this tender age. Until this time in my life, I have never sat among the ashes. However grim it feels, I know the Lord is good and I continue to hope in Him.