Pros and Cons
Afton has had a rough couple of days adjusting to or coming off of all her medicine. Three days ago when she was extubated she had uncontrolled jerky movements. At that time she was not conscious, so they did an EEG on her head to see if she was having a seizure. She was not. So they stopped all pain meds assuming that she was having an adverse reaction. After 24 hours she had still not stopped, so they took her off one of the anti-rejection medicines. The next 24 hours she continued to have uncontrollable jerks throughout her body but was conscious and at times even smiling. She got to watch movies all day. However, because her body was moving she could not fall asleep. After 30 hours with no sleep, she finally started sleeping in 1 to 2 hour increments. She wakes up, looks around, has a little tantrum (probably from pain and being overtired), then goes back to sleep. She has now been doing this for about 12 hours. We are still waiting for her to go into a deep sleep where her body actually calms and doesn’t jerk, but this may take some time. Her jerks have slowed down but are still very apparent. Depending on what is causing this, it could take up to a week to clear her system.
As far as her liver, it continues to give good results and is working well. While the doctors say that they would take a “perfect liver” if it became available, we are mentally preparing that we will more than likely be keeping this one. So, in our words here are the pros and cons. Starting with the bad, the UNOS (United Network of Organ Sharing) has a rule that if within the first 7 days of a transplant the artery stops working, the patient automatically gets 1A status, or national priority. There is a reason for this rule and Afton fits the criteria. We were told that most livers can only survive about 4 days without a fully working artery. So, this is obviously scary. Keep in mind that during those 4 days the liver would show signs of failure through blood tests.
On the positive side, we know Afton’s artery has never worked, yet the liver is working just fine. So, she does not show the expected signs of liver failure without her artery working. This could mean that the artery never worked inside the donor’s body and therefore the liver has learned how to function without it. So, if the problems have not surfaced yet, we don’t really know if they ever will. That’s a hard risk to take but we will more than likely have a whole new set of issues with a new liver.
Lastly, we would like to share what we know about the donor. Whether or not this liver ends up working for Afton, we have to acknowledge and send out positive thoughts to the family who lost their child. We know that the liver came from a 7 month old who lived in Ohio and died of heart disease.
We will keep you updated as we learn more but wanted everyone to know that a new liver is not our only or most likely option.
