I had a long somewhat depressing talk with one of the Dr’s last night. Mike had to leave the room, but I like this Dr. He seems to be the only one willing to give the hard ugly truth about what it happening and what could happen. Mike calls him the angel of death. I now see where my daughter gets her flare for the dramatic.
Dr. Muntez (I’m fairly sure I spelled that wrong) said that Zoe holds for the record for the longest in hospital wait for her blood group. He has other Apos patients waiting at home but at the hospital it usually happens much faster than it is for her. The Dr’s are frustrated. There have been other transplants since we got here and he said every time the phone rings everyone thinks ZOE! but then they find out it’s for someone else. It’s disappointing for everyone. The sad fact is that as her wait grows, the margin of safety shrinks. There are 2 mechanical options available to help sustain her. Those bring on a increased risk of stroke and with her irregular heart rhythms the risk is greater for her. 1 of the options is approved for use in the US. However, once it’s put in, it can only be used for 1-2 weeks so the clock really starts to tick. The other hasn’t been approved for use but can be used under what’s called compassion. Research shows favorable results in Europe but use in the US hasn’t been approved yet. It’s understood when consent is given that the patient isn’t part of a clinical trial, but the findings from it’s use will be included in the research data. With it’s use 1/2 of the patients make it through transplant. 1/2 do not so you have a 50/50 shot. As it stands 5% of patients waiting for transplant don’t make it through the transplant for a variety of reasons. With the use of these mechanical devices the risk doubles to 10% who don’t make it and the saddest truth is that not everyone listed lives to see the transplant. Some die on the list. It’s sad and it’s ugly, but it’s reality and no one is safe from reality. Mike has asked me not to be realistic in in presence. I said I would be happy to blow sunshine up his butt as long he wants me to. He is appreciative. Unfortunately I don’t know the name of these devices. I’m assuming that 1 of them is EKMO. ( i think i have that acronym right)
Here’s what’s happening now. Saturday her blood pressure dropped dangerously low. They started Dubotamine and a calcium drip to try to correct that. The problem with dubotamine is that it makes the heart work harder and no one wants her heart doing that for very long. So once her bp came back up they weened her off of it. They also pulled back on her tube feedings. They think too much blood was going to the intestines to aid in digestion.
They are having a harder time sedating our little prize fighter. They started a paralytic because when she wakes up and thrashes around (she’s very itchy) she can damage her esophagus with the breathing tube. They had to go up on all her sedatives and paralytics yesterday and as a result her bp dropped low again. They started the dubotamine again and her bp is stable again so they’re working to ween her off again. The tube feeds are at a slow a drip. Enough to keep her digestive system stimulated, but not enough to warrant actual digestion.
Because of the IV in her right ankle she has a small infection. The IV is coming out and they are starting her on some antibiotics until the cultures come back and they see exactly what they are dealing with. The infection presented itself as a series of red lines across her inner thigh. When someone pressed on it this morning and asked her if it hurt, she shook her head yes. That’s a possible reason for her fevers and for her increased agitation the last few days.
On the up side her donor pool as been increased. They measured her fist Saturday to see exactly how big they can go. (Fun fact: make a fist….that is the approximate size of your heart) I think now we’re accepting 1/2 her size up to 2x her size. They also increased the search area from 1500 sq. miles to 2200. That’s almost nationwide. The Clinic itself has 2 Lear jets they use. They have employed a company out of Atlanta that has a faster jet which allowed for the area increase.
So for now she’s stable and slightly more paralyzed for her own protection. Dr. Boyle is leaving town tonight and we all know what that means. Hearts tend to come while he’s gone. We didn’t get lucky last time, but that was a work trip. This is a vacation and he will gone for 3 days. Half my family is out of town this week as well so he says we should definitely get lucky. The stars may be well aligned for us during this holiday week.
As always, the clock continues to tick.