Sunday, June 9, 2013

MEET EZRA: WEEKS 0-6

In this post I'll try to sum up Ezra's medical history over the course of his first seven weeks of life, that way from this point forward we can try to post what is currently going on with our sweet boy for all of you who are following along.

04/25/13 - Appointment with our pediatrician
  • Ezra looks great. There are no real physical signs that anything is wrong with him.
  • We need to go to the lab to have a complete blood count (CBC) to check Ezra's platelet count and to see if his red blood cell count has continued to go back towards a normal level.
  • Our pediatrician has been consulting with a hematologist at Doernbecher's children's hosptial. Ezra needs to have head and abdomen ultrasounds done to see if there is an abnormal concentration of platelets somewhere.
04/25/13 - CBC at lab
  • Red blood cell count is headed in the right direction
  • Platelet count is 51. Not good. We need to go up to Doernbecher's to meet with the hematologist
04/26/13 - Head/abdomen ultrasounds
  • Ultrasounds are clear! Josh and I are elated. We assume that nothing serious is going on with our sweet boy, he must just have some treatable type of blood disorder. (We were falsely optimistic)


04/29/13 - CBC at lab
  • Platelets are down to 45
05/01/13 - Appointment with hematologist at Doernbecher's
  • This appointment lasts nearly 2 hours. Ezra is examined. Hematologist wants to find a diagnosis for Ezra that encompasses all his tiny little issues into one package.
  • Based on combination of complications after birth (low blood sugar, high red blood cell count) and possibly enlarged soft spot and possible separation in abdominal wall/slightly herniated umbilical among other things, he orders test for Beckwith-Wiedemann Syndrome (blood sample will be sent to St. Louis, results take a month)
  • While we are there, other blood work is done including CBC
  • Platelet count is down to 36
  • (A month later we find out Beckwith-Wiedemann Syndrome test was negative, he does NOT have the syndrome)
05/03/13 -  2 Week check-up with our pediatrician
  • We find out that Ezra's abdomen ultrasounds may indicate some bladder reflux. We will need to see a urologist at Doernbecher's for follow-up.
  • We will now have weekly CBC's done to monitor Ezra's platelet count
  • Karyotype test is also ordered (to rule out Downs, etc. A month later we find out everything looks NORMAL)
05/07/13 -  CBC at lab
  • Platelet count is up to 50, we are falsely optimistic things are improving
05/13/13 - Unscheduled visit with another pediatrician (our pediatrician was out of office)
  • That morning we discover blood in Ezra's stool
  • In addition, Ezra's belly button is bleeding, pediatrician cauterizes it
  • After consulting with a GI specialist at Doernbecher's, the suggestion is that I go off dairy and soy for 2-3 weeks to see if Ezra has a milk protein allergy (after 2.5 weeks, there is no improvement, pediatrician and hematologist do not think it's allergy-related and okay going back on dairy)
05/16/13 - Follow up with our pediatrician



05/21/13 - CBC at lab
  • Platelets have dropped to 20
  • Admitted to hospital for transfusion at 6PM. It takes SIX attempts to get IV placed. Platelets finally arrive and are started around 3AM. We are discharged around 1030AM the next day.
  • Platelets go up to 48
05/24/13 - CBC at lab
  • Platelets go down to 34
05/28/13 - CBC at lab
  • Platelets go down to 26
05/30/13 - Bone marrow biopsy at Doernbecher's
  • IV goes in on FIRST attempt, Ezra does great with sedation and procedure
  • Platelets are 34, preliminary results of bone marrow biopsy are NORMAL
06/03/13 - Appointment at Doernbecher's with urologist
  • Ultrasounds of bladder and kidneys look NORMAL, no bladder reflux repair surgery needed
06/05/13 -  Appointment at Doernbecher's with GI specialist
  • Blood in stool continues, doctor wants me to go off dairy for 2 months to rule out milk protein allergy
  • We also need to schedule a GI scope (endoscopy and flexible sigmoidoscopy). This procedure will require sedation and another transfusion because of the risk of bleeding (due to Ezra's low platelet count)
So that brings us up to date. Still no answers. Keep in mind we have been dealing with some pretty heavy stuff in the meantime like wondering if Ezra has a serious genetic defect like Beckwith-Wiedemann Syndrome or Down's Syndrome (if you look up Beckwith-Wiedemann Syndrome you will learn that 1 in 5 with the syndrome will not live past infancy, and if they do, there is a huge risk for developing cancerous tumors throughout childhood). We had to ponder both these diagnoses for FOUR whole weeks! We've also had to wonder about leukemia and many other scary things. But, by the grace of God, we have (mostly) been able to sleep at night (in between feedings that is :) breastfeeding is going great despite all the interruptions) and Ezra has been a complete champ through it all. We have been to and from the doctor's every other day it seems at times, which is not only exhausting, but it breaks our hearts to be away from Judah (especially for mama and Judah, since he is used to being with me all day every day). People have asked me how Judah is handling all of this...I say he's handling it as well as an almost 3-year-old could! When we are not at the doctor's or labs, we are nervously waiting by the phone for test results or to schedule new appointments. It's a very difficult way to live but we continue to remain hopeful. We are so looking forward to the day all of this is behind us and Ezra is completely healed. We can't say enough how much we appreciate all your love, support, and prayers. Please keep them coming, especially in the next couple days as we head back up to Doernbecher's.

1 comment:

Jennifer House said...

Thank you for sharing!