Tuesday

I apologize for the lack of information these days. It's because of the endless flow (of information) that we have been receiving. Jackson has had two very difficult days in a row. He is swollen again, but this time all over his body. He's uncomfortable and nobody seems to agree on why. If I were to diagnose him from a mother's perspective I would say he's a bit constipated, he's having withdrawals, and the extra fluid is making it hard for him too breathe. It has been challenging to deal with this in step down. The doctors are not familiar with him. Plus the mentality of step down seems more geared toward progression of what's already established than toward actual treatment of problems. It is excruciating, as a parent, to watch your child suffer while doctors search (or don't) for a cause. We're thankful for a great patient advocacy team here at Children's, and thankful for a Father who not only cares about Jackson but actually created him.

I spent the entire day, it seemed, talking with various types of health professionals. Neurology came by and said Jackson will not be able to have further MRI's because of his pacemaker. This was very disappointing as this is basically our only diagnostic tool for Jackson's neurological status other than just observing his behavior. I guess we'll continue to pray the pacemaker could be removed...and continue to take it one day at a time.  There is no doubt that Jackson responds to us socially and mentally. He is enamored with his mommy and daddy. I also was introduced yesterday to the world of home care planning. Wow. IV therapy for several weeks (because of his antibiotics for the pacemaker infection), feeding pump (though they are currently working to get him off the NG tube and to regular feeds), oral medications, twice weekly nursing visits, follow up appointments, physical therapy, occupational therapy, speech therapy...never in my life have I been more grateful for my medical training than now. I remember how obvious it was that God was calling me to nursing school. I thought all these years that the purpose was twofold--helping the sick in our community and helping with our finances. As surely must always be the case, God's purposes have proven to be much deeper than mine. I am so, so grateful to be a nurse.

Aside from all that's going on with Jackson, Mason had his heart follow up today. The doctor told him his heart MRI was consistent with his diagnosis of myocarditis, but that it appears no permanent damage was done whatsoever. Praise the Lord. What a gift health is! They will repeat an MRI in six months, but don't anticipate problems.

We know how so many (all?) of you have labored in prayer for us these last eleven weeks. Please could we ask you to continue to pray? Our knees go weak and our hearts tremble as we deal with present problems and future plans. We are in constant need of divine upholding. Pray for health, but also for faith! Peter started to sink when he looked away from Christ to the wind and waves. But, as Dad reminded me tonight, "even the wind and waves obey Him." Mark 4:41