Elisabeth has been doing most of the posts lately, since I’ve been spending most of my computer time doing work stuff. I’m glad to be doing an update this morning.
We had our weekly meeting yesterday afternoon with the head cardiologist, very caring and informative guy, actually a stellar guy. Along with our surgeon, he is a transplant from the world’s best pediatric cardiology center, Boston Children’s Hospital. We have an incredible staff.
There were several issues that we talked about with the cardiologist. The main points are what we’ve basically been concerned about over the last week or two:
1) her liver is still a HUGE question mark, they don’t know how well it will function when put to the test. Two weeks ago when they really gave her liver some work to do, fats and sugars from mama’s breast milk were too complex and difficult to metabolize, so Jane just pooped them out without gettin any nutrition from the milk. They put an end to that real quick, and gave her a formula alternative. One day when they try out mama’s milk again, how will it perform? That’s part of the huge question. In the meantime, she’s on feeds that are actually making her liver worse! But bad food is better than no food. Nonetheless, her nutrition is of utmost importance right now. Lower down on her list are liver and kidney function. So they are goin to keep feedin her and will suffer the consequences later.
2) Jane has passed the big test of heart surgery. They’re reasonably encouraged at her ability to adapt to her new plumbing inside. Her other organs are still recovering from that trauma though. Ultimately, the big concern right now is for the machines she’s hooked up to; technology just isn’t flawless. Jane has had 3-4 episodes this week, all associated with the her breathing tube. If only she can get rid of that dang tube, she’d be so much more comfortable. We naturally cough as a response to the junk in our windpipe (trachea), and because of the tube, Jane doesn’t have that luxury. So the respiratory therapists have to go in and suck out all the secretions, and boy does she HATE it. When they go in to suction her, her heart rate drops, pressure rises, and oxygen saturation drops. Liz and I have similar symptoms when we watch it. Now, if they took out her breathing tube, she wouldn’t be able to breathe, because her lungs aren’t quite strong enough. So her breathing tube is a necessary evil right now. Every night we pray for her lungs to improve so that we can get that breathing tube out– kinda for her benefit, but mostly so that we can see her face hiding behind all that tape and tubing. We’ve only seen her face twice. And man, it’s breathtaking. Cosmo is asking to get her on the cover.
I’m going to pat myself on the back right now. The nurses were ready to give Jane some morphine to calm her down, because they wanted to do some work on her (clean lines, change diaper, check IVs, etc). I said wait 5 minutes, I’ll calm her down, then you can go in and do your thing slowly and quietly. All work is done, and she’s happy, staring at her mama right now.
Tomorrow is the big day for Jane’s hubby, we’ll definitely be there with them (in spirit) as they dedicate their baby to God.