Saturday, May 15, 2010

Update on Andrew

Wednesday afternoon we got a phone call from a nurse in the genetics division at Cardinal Glennon Hospital. Andrew's state-mandated newborn screening came back showing elevated tyrosine levels (normal is ~250 and his were ~750). He needed to go in Thursday morning to see one of their specialists and have some more testing done. The screening is not definitive, she said; it is an indication that they need to run some additional tests to see what is going on.

While we were caught by surprise by this news, and would have of course preferred that Andrew's screening had come back "all clear," we were thankful that we were headed straight to one of the best pediatric care facilities in the midwest. We were told that we would meet with a genetic counselor, then with the specialist. They would do more blood work, as well as a urine analysis.

The "peace that passes understanding" proceeded to envelop us.

Thursday morning, we headed to Cardinal Glennon (about an hour away) with Andrew. Almost everyone we dealt with was very pleasant to work with. The nurse, doctor, and geneticist were upbeat about how well Andrew is thriving and seemed hopeful that the tests will show that his tyrosine levels have gone down to normal.

I'm so glad I took pictures of his beautiful feet on Wednesday (before The Phone Call), because now he has a horribly bruised foot from trying to get enough blood for the amino acid testing. They used that partial vial for the bili test and the lab tech got a vein in his hand on the first try for another vial, which was much less traumatic. The results will hopefully be in next week.

Some info we've learned about tyrosinemia:
There are three main types of genetically-passed-on tyrosinemia, plus transient (temporary) tyrosinemia that can be caused by a variety of factors. We don't don't much about the ramifications of tyrosinemia, other than that they can be potentially very serious and vary widely according to type. A few links with more info on tyrosinemia, for those who are interested:
Info on various forms; this link is to an overview page, which links to other sections
An article for health care providers
6 pages of info on elveated tyrosine levels in newborns
Article specific to the genetic forms; very interesting
Article specific to Types I and II

From our human perspective, the best case scenario would be to find that Andrew's elevated levels are already dropping and to see them continue to fall over the next several weeks. On the other hand, His ways are not our ways and His thoughts are not our thoughts. Our prayer is that we would get an accurate diagnosis as quickly as possible; that God will give us wisdom; and that He will help us to love and care for Andrew as He would. We are at peace as we wait. And we treasure your continued prayers.

In the meantime, Andrew seems to be thriving. He is nursing great, having lots (relatively) of wide-eyed awake time, digesting well, gaining weight, and getting sweeter every day. He is so dear to our hearts.


Laurie said...

Beautiful photographs of a beautiful baby boy!
Praying for God's direction, His best and the peace that passes understanding!

Stephen and Gracie said...

We're thinking of you and praying!

Tracy Crowe Jones said...

I've been so wrapped up in the unexpectedness of my own life that I just saw your post. Keep us updated and I will be praying.

The verse that Mark DeGroff shared with me today is John 16:33 - I have told you these things so that in Me you may have peace. In this world you will have trouble. But take heart, I have overcome the world.

Laurel said...

Thank you all for your prayers.

Tracy, you are all in my prayers as well. Wish I could be there to hug and support you in person.

Peachtree said...

You're in my thoughts and prayers! Keep us posted!