Wednesday, June 12, 2013


Trying to wake up from sedation. Such a trooper through all of this!
So in case you are just now following along, shortly after birth it was discovered that Ezra's platelet count is extremely low. A normal platelet count is between 150,000 and 450,000 per microlitre of blood. Ezra's platelet count has hovered between 25,000 and 35,000 in his first seven weeks of life (FYI, when we talk about Ezra's platelet count, we usually drop the zeros). There's been a couple times the count has gone up to 50, but never any higher than that. Anyway, for the past month, Ezra has had blood in his stool. Thinking that it might be due to an allergy, the doctors had me go off dairy and soy for two weeks. After two and a half weeks with no improvement, they decided the blood must be due to the low platelets (low platelets=bleeding/lesser ability to clot), and they told me to go back on dairy and soy. Then, we were referred to see a GI specialist about a scope. The hematologist wanted us to check to see if there could be something going on in the GI tract that could be destroying Ezra's platelets (like a vascular abnormality) (but also, low platelets themselves can cause bloody stool). The GI specialist was more keen on me going back on a dairy elimination diet, this time for two months, but also scheduled an endoscopy and flexible sigmoidoscopy. Because of the risk of bleeding during this type of procedure, especially because of the biopsies that would be taken, Ezra would need a platelet transfusion right beforehand. The doctor decided it would be easiest for him to be admitted to the hospital the night before, because the whole process from start to finish would be easiest if it started very early in the morning (4AM to be exact). So on Monday afternoon, up to Doernbecher's we went.

That evening after two attempts to get an IV in (this is always such a traumatic part of any of Ezra's procedures, unfortunately he inherited my tiny and very uncooperative veins), they took a blood sample for a CBC so we could know how much platelets to order. Remember, Ezra's platelets are usually 25-35 but they've been as high as 50 (but never, ever higher). Well, after that CBC, we found out Ezra's platelet count was up to 120. WHAT!!?? Everyone was in shock. For Ezra's platelets to have gone up at all would have been amazing, but that much? Wow. Josh and I were very reluctant to get too excited, we've been falsely optimistic before. But, after it took FOUR attempts to draw blood the next morning to do a recheck (because Ezra was too hard to get blood out of with just a heel stick) we were pretty confident that Ezra's count was still up...and it was!! 93 this time. Of course we would have liked if it had gone up even further and not dropped some, but we've been doing this long enough now we're just happy when it's over 35.

So what does a platelet count of 93 mean? Well, it means that Ezra didn't end up needing a transfusion before his procedure, hooray! Transfusions can be really scary so it was awesome that we had just one less thing to worry about. The sedation for the procedure went well (anesthesia is always scary too) and the doctor was able to get some good pictures and biopsies during the scope. She found some small ulcer-like spots and inflammation in stomach that are indicative of milk protein sensitivity, but no vascular abnormalities that would explain platelet destruction. We should know more in 7-10 days when we get the biopsy results.

While we are rejoicing with Ezra's unexplained platelet increased, we are doing so very cautiously. We don't want to get our hopes up just yet. Next week we will have our weekly blood draw and we should know some more about what his platelets are doing then. And, unfortunately, with every good piece of news another challenge seems to follow. Along with an increase of platelets, it has been brought to our attention that now Ezra's white blood cell count is extremely high. So what does that mean!? Ezra threw up (not just spit up) while we at the hospital, but other than that and the tiny ulcers/inflammation in his gut, he has no fever and isn't showing any other signs of infection.

Sigh. Glory be to God for so many things that have been going well and for favorable test results, but we still have so many unanswered questions about Ezra's platelets and now a new challenge. The doctors are so perplexed by all of this and the path forward seems so unclear. What we do know, though, is that Ezra's counts need to be monitored very closely so we will continue with our weekly blood draws. We will also be seeing a geneticist in the near future to see if they can shed some light on any of this and to see if something has been overlooked.

I know many of you have asked how you can help and it's hard to say what you can do besides keep praying! But, if you are wanting to help in a more tangible way, meals or restaurant gift cards would be very much appreciated. We seem to be averaging about two days at Doernbecher's a week, and by the time we get back from those trips we are completely exhausted and making a meal when we get home seems like a pretty big task. If you know Josh and I, you know we don't like asking for help, so we are very humbled to do so...and I know some of you are tired of our "we don't need anything" response :) So, yea, my diet is very restricted these days. Gift cards to places with large vegan offerings like Laughing Planet, Cafe Yumm, Nearly Normals, Baja Fresh, Spice & Ice, the co-op or Market of Choice would be super helpful, especially since we don't always know what days we will be in Portland or what nights we will be getting home late. But, if you're really wanting to drop off a meal, it would probably be easiest to make something non-vegan for just Josh and Judah (their favorites are comfort foods and not a lot of veggies...go figure!).

Again, glory be to God for continuing to watch over our sweet boy and for helping us all get through this. And many thanks to all of you following along, for continuing to pray and for offering your support and well wishes.

Ezra getting a ride in his cage (aka, hospital bed crib) back to our room after the procedure.


kimra robinson said...

Our prayers are with you all in this journey. Having had to leave the hospital without your baby is hard to do. We had to leave our Jeff in for one week following my checkout. Hang in there and know that God watches over all and will meet the needs that arise, whatever they may be. God bless!

Anonymous said...

We continue to pray every day/night for Ezra and all of you. Praying that the scopes results show something that will help get things normal. I am so glad he is a happy baby in spite of all the jabs and pokes. Wishing I was there to give hugs and love. Brenda