I threw myself a bit of a pity party last week. It was kind of a lonely affair since the only guest was me. I suppose Addison was there too but she doesn’t really say much. Though on second thought, she should actually be the guest of honour since she is the reason I needed to wallow.
Except for a few fleeting moments on the night Addison was rushed to the ICU in heart failure, I have not allowed myself to indulge in the “Woe is me…why me?” train of thought. When you see all the other ICU families at the bedsides of their little ones, who are also battling a litany of life-threatening medical problems, you get off that train pretty damn quick. And then after that, you are going full-tilt just hanging on to the roller coaster that accompanies a life-threatening medical problem.
While life has mostly returned to normal, it isn’t normal and never will be normal. Addison’s new heart is not a cure. It is a manageable condition. Of course, compared to the alternative, there is no choice.
Last week was frustrating. On Tuesday, we found out her Tacrolimus levels (a moving target we can’t seem to reach) had dropped down to 4.4, which is even low for her. Our little barely 8kg baby is on a huge dose…even bigger than what an adult transplant patient would get. So it was increased again, putting us at 4ml/2 times a day. Back to the lab for blood tests Friday which showed her Tac had not budged much at all. Now there is talk of giving her 3 doses a day…8am, 4pm and midnight. Wow, that sounds pretty awesome doesn’t it? This is an anti-rejection drug she will be on FOR THE REST OF HER LIFE! The reality is no one has an answer to the medication issues. We don’t even know what her Tac levels are throughout the day because these tests are done just before she takes another dose. The body of research on neonatal heart transplant patients is pretty thin. This morning, another date with the lab techs. Now we are awaiting the latest numbers with bated breath.
On top of that, the little princess has been fussy this week. Her napping is off. She is clingy. She is probably teething. Separation anxiety, mental development milestone, growth spurt, whatever. It all put me over the edge and I was feeling sorry for myself wondering “Why can’t I just have a healthy child????” Sigh. Then I felt guilty because I know I should be so grateful for every extra moment I get to spend with my baby watching her grow up. Don’t get me wrong. I am truly thankful for the miracle that gave her a second chance at life. Once in a while, I need to stew about it.
Ok, I’m all good now.