Thursday, July 30, 2009

7-29-09 Bad News

Quick update because I’m working the night shift tonight. Harley has a blood clot in the upper right chamber of her heart now, most likely from the IV in her neck (which is now out). They are giving her an anti-coagulant (makes the platelets [things that cause clots in blood] not so sticky so the clot can dissolve) and are going to do another ultrasound on Friday to check it. Only reason they found it is because they did an ultrasound on her heart to check her VSDs (small pinholes in her heart that are closing and they aren’t worried about them, just watching them still: she’s had them since she was a week old) to make sure blood wasn’t leaking out of her heart and they saw it.

More bad news to report is that her liver is starting to fail. The exact words were ‘not processing proteins’ and that her liver had ‘high enzymes’. For those of you who don’t know this is the next phase of Alpers Syndrome. They didn’t really tell me a plan of action for her liver failing, just that they’re trying to get all the levels of things like protein and potassium stable in her blood so she can go home and we can spend time with her. The only time frame I was given was weeks to months, it just depends.

Her bloating is a little better, but she’s not back to her normal self by no means. Apparently protein helps with bloating by keeping fluids in your blood stream instead of them leaking out and causing bloating. Well, the Lasiks, on the other hand, helps bloating by flushing out the excess fluids, including the protein. So they’re trying to keep protein in her and flush out the excess fluids, so it’s a vicious cycle. They are cutting back on the Lasiks and the doctor said she should be off of it in a few days. Also, this new ‘Boost’ formula supposedly has more protein in it and that’s why they switched from PediaSure. What I’m thinking is if her liver isn’t processing the protein correctly, then is that why she’s bloated? Just my train of thought…

Lastly, her seizures are still pretty bad. A little better today because she got more sleep, but still pretty bad. I talked to the doctor today and he said he’d look into raising her Phenobarbitol (the anti-seizure med they cut back on) back to the normal level it was at when we were home.

So, once again, there’s really nothing any doctor here on Earth can do for her, so it’s up to God now. Please, if you do pray, just say a quick one for her so that she’s at least comfortable and can enjoy the time she has. Thank you.


  1. Praying so hard right now.

  2. she has not left my thoughts...hang in there..

  3. You are in my prayers. How tragic for a mother to go through. May Gods grace be with your family.