Aside from having a hard time waking up from yesterday's anesthesia and pain medications, Rebekah has had a great day. Her heart rate, blood pressure and oxygen saturation were within the ranges that the doctor was targeting. During the day, the respiratory therapists worked on turning down the ventilator settings and Rebekah sailed through each of the trials. When we left the PCICU for the day, Rebekah was more awake and the plan was to take her off the ventilator during the night shift.
Rebekah had a small dose of morphine this morning and otherwise has just been on Tylenol throughout the day. She has seemed to be resting very comfortably during the day - so comfortably that it was hard to wake her up!
The results from the genetic testing on Rebekah came back positive for DiGeorge Syndrome. We met with a geneticist this morning to discuss a bit about the syndrome and what possibilities may come from it. There are many different potential problems including: cleft lip and/or palate, cranial-facial deformities, auditory problems, endocrine system problems (including calcium deficiency and thyroid problems), immunology deficiency (weak immune system), kidney deficiency, mid-line heart defects, and developmental delays and/or learning disabilities. Rebekah has not exhibited symptoms of most of these things, but obviously some are too early to tell. So far we have ruled out cleft lip/palate, cranial-facial deformities, kidney deficiency, and we already know about the mid-line heart defect (obviously!). As Rebekah grows, we will be monitoring her endocrine and immune systems closely and watching her developmental milestones. She will have a few more tests done while she is in the hospital to check the function of her immune system and she will have a hearing test done. Ultimately, no matter what the doctors say is or isn't "wrong" with our little girl, we know that she is perfectly the way that God has made her, and she is perfect for our family.
We are excited about Rebekah's progress. Tomorrow some of the lines and tubes she came back from surgery with may be removed if she continues to do so well. Rebekah will also be started back on some small amounts of milk tomorrow if she tolerates it well.
That's about it for today. More updates and pictures to come tomorrow!
Nancy
3 comments:
So thankful for all the answered prayer!!! Can't wait to see some new pics of your little angel! She is so precious to all of our hearts, and we are so thankful for the opportunity, and privilege to pray for her, and her wonderful family. God bless you all!!
Thinking of you. Praying for you. Aching for you.
Glad to hear that Bekah is doing so well! I remember finding out Trey had DiGeorge. I was terrified, but as you said he is perfectly and wonderfully made. We have been very fortunate to have a mild case of DiGeorge so far with few issues. Praying the same is true for Bekah!!
Take Care,
Ashley Anderson
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