Wednesday, March 4, 2009

Crushing News in Oct. 2008 ... Blood Clot In Baby Wyatt's Heart Not Gone

You go to the appointment, hoping, praying that the specialist will say what you what him to say. You've given the needles, you went to all the appointments and stroked your baby's soft sweet smelling hair as he howled with discomfort while being poked, prodded and analyzed. You've agonized over each breastfeeding session, pushing his limits, praying he'll take more so he will grow, therefore making the clot smaller in relation to his heart. And you've prayed that his little body that's been through so much will have absorbed the clot and it is gone. So how do you feel when the specialist looks across the table at you with all the print outs, graphs and numbers in front of him, telling you that it is not gone. That it never changed in size. That there is an indication that the electricity of his heart is abnormal. And if left as is, he will die.
How do you feel?

I so wanted to hear this past, present and looming nightmare was gone. My hopes were high that October morning when Wyatt and I went up to the pediatric ward at the Dr. Everett Chalmers Hospital. We've been waiting for this day since we were discharged from the NICU. The chance to meet with the heart specialist from the IWK Hospital Halifax, Nova Scotia. We went through the usual weight and measurement checks. One week prior, Wyatt had an electrocardiogram (ECG, EKC) done. He had another done while waiting for the specialist.

The specialist had his own technician come Fredericton so that he could be sure the echo cardiogram or ECHO was done the way he normally has it done. Wyatt had had this test done in the NICU and he really does not enjoy it. This time I had a bottle of milk ready to use as a diversion tactic. The technician was a really nice lady who chatted with us, cooing over how big and handsome Wyatt was. Wyatt, being his usual self, flirted something fierce with her! LOL.

I distracted Wyatt with his bottle while she started placing the wires on him, trying to act as calm as I could for Wyatt's sake, but inside I was so nervous and excited. I was sure the clot was gone! It had to be. All those blood thinner needles I gave him had to have worked.

Finally, the sort of fuzzy image of Wyatt's heart appears on the monitor next to Wyatt's bed. And the first thing the cardiac technician says? "Wow, that's the biggest clot I've ever seen."
Stunned, I watched her map the image, taking the measurements and entering data. The specialist comes in and he points out the shape of the clot in Wyatt's heart and down his aorta. It was horrific and fascinating at the same time; I had never actually seen the clot before.
The specialist took the data and advised me he needs to review it first. I'm told to wait in a separate room with Wyatt. At this point, I was trying to keep it together because I know the doctor will not tell me everything if I am falling apart. I've been down that road before. So I wait.
He came in and spread all the print outs on the table. Wyatt's clot is massive. He actually did not have the measurements from the previous NICU echo but it didn't matter. I am told a "clot team" in IWK will have a conference on Wyatt to see how to proceed and that I should be able to stop the Lovenox injections. This shocked me and scared me. What if the clot gets bigger? When I asked this, I was told to continue the injections until Dr. S. hears from the clot team.
And then the specialist pulled out the stripe showing the peaks and valleys of Wyatt's EKG. There was a problem. The test matched with the prior one, showing a pattern that indicated Wyatt may have arrhythmia. This was completely new to me. What could this do to my son? He made reference to young adults and children that have heart failure while playing sports. He tells me so much information but at this point I was so overwhelmed that it is washing over me. I'm nodding my head as he talks, trying to look calm but all I want to do is grab my sleeping son out of his car seat and hug him tight to my chest.
At the end of the meeting, I had to ask. "Can this arrhythmia problem kill my son?" The specialist hesitated before answering me. Yes, if left untreated. I thank him for his time and leave, crying my eyes out as I drive home.