ex machina
the eric update - day 74: still breathing on his own! plummeting platelets. elevated bilirubin. questionable meds?
he's still breathing on his own after 36 hours! after 72 days of various forms of respiratory assistance, it's hard to believe that he may finally be free of supplemental oxygen.
and he's still eating like a champ, taking all his feeds via a bottle and nursing twice a day. while his official minimum feeding requirement is 40 cc's in 30 minutes, he seems to enjoy drinking whatever we give him and then a bit more. during his 9 p.m. feeding he drank 50 cc's in 25 minutes! woohoo! not surprisingly, all the breastmilk is helping him to continue to gain weight and he tipped the scales tonight at 4 pounds 3.7 ounces or 1920 grams.
unfortunately we received the results from two lab test that are a bit of a concern and could potentially delay eric's release from the nicu. first, after two weeks of watching his elevated "direct bilirubin" level closely, it's not only not going lower but it's rising, which is somewhat disconcerting because the predomominant theory being bandied about by his caregivers was that the elevated levels were related to being switched back and forth between IV feeds and breastmilk; according to the theory, after he was on full feeds of breastmilk the levels would gradually decrease, but that's obviously not happening.
secondly, his platelet levels are dropping to dangerously low levels. a normal platelet count might be between 150,000 and 200,000 and his results from this afternoon came back at 70,000. this is such a low level that his neonatologist immediately ordered a new test to rule out a lab error. the second test indicated that his platelet count was 60,000.
the elevated direct bilirubin and decreased platelets are cause for enough concern that he's being put on "increased surveillance" which means they'll run blood tests more frequently ( which also means that he might need another transfusion since they need to draw blood for the tests ).
as always, there are multiple Educated Guesses that could possibly explain the lab results. his increasingly elevated direct bilirubin levels might be due to his latest blood transfusion, since transfused blood cells die more quickly than "regular" blood cells and direct bilirubin can be a by-product of the red blood cell death. his diminished platelets might be related to the fact that his hemoglobin levels were so low before his transfusion. bone marrow is responsible for producing both red blood cells (RBCs) and platelets and it only has so much capacity to produce both entities. before his transfusion, it's possible that his blood marrow kicked the production of RBCs into overdrive and slowed down making platelets. or, more scarily, he might be getting a viral infection, which could decrease his platelet count and increase his bilirubin levels. or he could be having an adverse drug reaction to the reglan and zantac which he had been given to help control his reflux. the neonatologist told us this evening that decreased platelet counts are a known occasionaly adverse effect of both drugs.
so, for the next 72 hours we'll patiently wait for the results of his bloodwork and wait for his caregivers to put together a more coherent picture of what might be going on. interestingly, eric's neonatologist was leaning towards thinking that the increased bilirubin was due to the transfusion and the decreased platelet count was caused by an adverse reaction to the reflux meds. if that's the case, then we are all the more grateful that my sister, candy, quickly alerted us to the fact that both meds were potentially dangerous. a quick follow-up from regular reader and frequent commenter, katra convinced us to immediately request that the meds be discontinued. at the time that we we asked that his meds be discontinued, the neonatologist was gracious and didn't make us feel uncomfortable for expressing our concerns, although he did make a point to say that he didn't think that adverse events were very common. i guess we should be happy that he's not too proud to be admitting just a few days later that the meds might be the cause of the problems.
hopefully we'll have more more definitive answers soon.
9/16/2004 11:29:00 PM
5 comments
5 Comments:
Plugging Prevacid as the Reflux med of choice... I do have to say that I really hope that this wasn't because of the Meds - but as the dr mentioned, it could be (and you have every right to be distubed by this).
As for the Direct Hyperbillirubemia - I agree that the transfusion could be part of this... However, I'm still leaning to the breastmilk as being the primary reason. Kyle's increased levels came AFTER he was on full feeds. We peeked after about 4 weeks, and then started to decline. It's scary, never knowing what to expect - but I will add that a small daily dose of phenabarbotal (used to help control DHB) really helped. They give a much smaller dose than what would be given to a seizure patient, and we didn't even notice that Kyle was any more drowsy than normal.
Also, when they transfusion him - are they using "Packed Cells" or doing a standard transfusion. In addition, are they going to transfuse platelets? Kyle had to have several of these during a 2 month period of issues he was trying to overcome. After each transfusion, we saw an amazing difference. His platelets became dangerously low on several occassions - we were so worried - that when the dr finally told us he was at 90K, I jumped for joy (sad, isn't it).
Well, I know this must be so frustrating... But as you have pointed out already - look at how amazingly well he is doing! It just lifts my spirits everyday...
Have you read any of Dr. Jack Newman's stuff about newborn jaundice and breastmilk? Granted, it's all based on moderately premature (32wks +, I'd imagine) amd full term, otherwise healthy babies.
Also, is blood marrow the same thing as bone marrow?
:) Emily
By 
, at
8:36 AM
Have you read any of Dr. Jack Newman's stuff about newborn jaundice and breastmilk? Granted, it's all based on moderately premature (32wks +, I'd imagine) amd full term, otherwise healthy babies, but he purposes some interesting theories.
Also, is blood marrow the same thing as bone marrow?
:) Emily
By , at
8:36 AM
katra: i'll check on the "packed cells" situation and, yes, they'll give him a transfusion of platelets, if the counts don't start rising soon. his 3.a.a labs showed that his direct bilirubin level started to decline back to it's previous elevated level, which they are taking to indicate that the fast spike was, indeed, an artifact of the transfusion and that the mild, chronic elevation is what they initially diagnosed - sludgy liver due to the IV/breastmilk switcharoo. his platelets dropped another 10K, but i don't think they're going to run more labs until tommorrow ( can't take too much blood or they'll be forcing him to get yet another transfusion ) so we'll have to bite our fingernails for awhile.
emily: "Also, is blood marrow the same thing as bone marrow?".
ooooooooh, so you're an editor now! thanks, smarty pants. i've fixed it :-) almost exactly at the same time you posted the link about breastmilk jaundice, a little birdie sent me sent me a link in a private email. i hadn't heard of it, so thanks for the info. given his latest lab results and a couple of other factors, as i stated above, i think they are leaning towards the "sludgy liver" theory, but i'll run this up the flagpole and see what they say. one thing that's unclear - i can't tell from the article if "breastmilk jaundice" is associated with a rise in "direct" or "indirect" bilirubin or both. indirect bilirubin causes normal physiologic jaundice, but not direct, which is what is rising in eric's blood.
E3, ya made me giggle. I honestly thought it might be something associated w/ preemie world that I didn't know about. Thanks for clearing that up!
Wrt so called 'breast milk' jaundice...I'm not sure if it involves direct or indirect bilirubin. I do know that some healthy, full term, exclusively BF'd babies have elevated bilirubin levels for sometime after birth, with no ill effects. Again, not sure of the specific nature of the bilirubin levels. There is some discussion (read Dr. Jack Newman)that this might actually offer some protection to a newborn and isn't entirely a bad thing. But that's a huge tangent and w/o knowing which levels are raised (or if it involves both) it's really not beneficial info in general. Just food for thought, I guess. They actually still don't know what causes 'breast milk' jaundice, but these babes (again, mostly full term or slightly premature) don't tend to suffer from any related health issues.
Anyhow, if E4 behaves true to form, it'll all be cleared up quickly and he'll be back on track soon.
By , at
11:06 AM
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