From Bree, in the hospital in Cincinnati:
Thanks for the continued prayers! And thank you for the food, supplies, and borrowed clothes as well! Nathanael is doing MUCH better than he was just a day ago, and that is reflected in both his lab values and his behavior. He is in general much happier than he was. However, he is still on very high doses of steriods, which makes him agitated, and makes sleep difficult. I had just obtained permission to give him some Benadryl this afternoon because he had not yet taken a nap, but by the time I got back from heating up my lunch he had finally conked out and was sleeping soundly. Of course, that's after I covered his crib like a bird cage and left the room. When it comes to fighting sleep he is one determined little boy!
It's funny, but in a way I feel at home here. This place has been a significant part of our lives (well, my life and Nathanael's anyway) for the past seven months, and in some ways we feel pretty comfortable here. Strange, I know. But hopefully most of you will never have to understand.
One of the things I like about being here (or even at Children's Dallas) is the support I feel from staff members and other families. From the social workers and child life specialists, to the nurse-practitioners and other patient-care staff, almost everyone is supportive and encouraging in some way. In fact I told our lactation nurse yesterday that I appreciated her role as my cheerleader through some of the most difficult days. Even those close to the transplant process admit that they have a hard time understanding what it must be like to go through, but even the sensitivity displayed by that admission is helpful.
Two things are especially challenging for me right now: (1) I miss Jamison like crazy, and (2) I am heartbroken over how difficult this process has been for Brad. Though he is surrounded by loving friends and family he is still far from Nathanael and I, and can't be here to see us or help with the day-to-day care. He is much more involved in the financial and logistical details of this treatment and its impact on our family, and is aware of those costs (many of which are unknown to me). He is also playing the role of single-father to Jamison again, and I know that his respect for those who deal with this type of family situation long-term has grown tremendously through our experience.
Part of the challenge right now is to balance the needs of our boys with our responsibility to protect them. Our doctors have been very clear with us that the biggest threat to Nathanael's health is other children, so when our boys are together we need to keep Jamison pretty sheltered. Though it looks overprotective to those around us, here are the rules we have worked out in conjunction with both teams of doctors:
Jamison and Nathanael should have minimal physical contact with each other. (I allow Jamison to touch and count Nathanael's toes, but I make sure his hands are clean, and still wipe Nathanael's toes afterwards as well.)
We can have healthy adults in our home, but may not have kids over.
Jamison can play with other healthy stay-at-home kids in their homes, and should change his clothes when he gets home. (We have been advised that he should not be around kids who go to school or daycare, as that increases the likelihood of his getting sick.) Our doctor in Dallas specifically mentioned that Jamison should avoid Sunday School, for at least as long as Nathanael is on steroids, which suppress his (less than 10% of normal) immune system.
We should avoid public places as much as possible, including parks (we are grateful to have a great swingset on loan from friends in our backyard, so we can play there, as long as I keep Nathanael in the shade, as exposure to sun is dangerous for him), stores, the library.
One might ask, "Is this fair to Jamison?" and the answer, of course, is "no"...but then again my dad used to tell me all the time that life isn't fair. I didn't like that answer then, but now I'm convinced that it's an important fact of life. As a Christian I can appreciate not only that life, indeed, is not fair, but that I'm thankful that it's not. If we were to truly experience what we deserve (i.e. what is "fair") we would be apart from God - and all the gifts He so graciously gives - all the time. What we have "earned" with our rejection of Him and His ways is condemnation, and instead what He offers us is forgiveness and grace. So I have to remind myself on a regular basis that what is "fair" is not really what I want.
Our perception of fairness is another problem altogether. It is easy to look around and desire what we think someone else has - or what they actually have - instead of what we have, or where we are in life. However, if we believe that God created the whole universe, created us, and loves us, how can we complain that the life He has given us is not good enough? "Should the thing that was created say to the one who created it, “Why have you made me like this?” When a potter makes jars out of clay, doesn’t he have a right to use the same lump of clay to make one jar for decoration and another to throw garbage into?" (Romans 9:20b-21)
So we will continue to adapt our family life to fit the guidelines given to us by our medical teams, to protect the physical health and safety of our boys, and to provide for their emotional, social and spiritual growth as well. Please do pray for us in this, as it will require great creativity and perseverance. It could be another year or more before Nathanael's 10% of an immune system is up to 100%, and we will need wisdom for every step of the way.
It has been a long day, that dose of Benadryl we gave Nathanael about an hour ago has finally kicked in, and it's time for me to get some sleep...good night!