Thursday, September 8, 2011
A Tough Decision
Norah was discharged from the PICU on Friday 9/2, only to be readmitted on Tuesday 9/6 (the ambulance ride wasn't as thrilling as I thought it might be). This is her third stay at the PICU, and fourth hospital stay including those first two weeks after she was born. She continues to struggle with blowing off her CO2 due to her restrictive lung disease. Not only can this cause internal damage, but her body can simply decide to give up on breathing all together.
Today we had a care conference with most of her doctors including the PICU attending physician, pulmonologist, ENT specialist, tracheostomy specialist, geneticist, and a few others. Let me tell you - they're all pretty amazing. They make us feel like part of the team in her decisions and overall care. They're sure we're well informed and comfortable with all decisions that are made as a consensus. We all agreed that something needed to be done to stop the constant in and out of the PICU. Unfortunately, the high-flow oxygen just isn't doing enough for her, and our only option left seems to be a tracheostomy. This was a huge decision for us and for the doctors, as they admittedly don't like doing them unless all other options have been exhausted. Trachs are quite invasive, there are multiple surgical and anesthesia risks (especially for little Norah), and often require a tremendous amount of care at home. Most trachs are put in for neuromuscular problems, though that is not what her issue is. Rather, she needs a stable airway to connect to a vent so she can breathe more effectively at home. Which by the way, is where the first picture was taken... at home, about two weeks ago, where she belongs. It's one of my favorite pictures of her... she's just so beautiful. The second was taken yesterday while she was napping comfortably at the hospital.
So the surgery is quite risky, and it's difficult for me to mentally and emotionally process those risks, let alone type them all out. Her skeletal dysplasia really poses all sorts of unique challenges and special considerations that they'll be assessing as they go. The ball starts rolling tomorrow (Friday) at about 2:30 p.m. mountain time, or possibly a bit earlier. Any extra love you have to give tomorrow would be welcome with open arms, even if it's just a little thoughtful well-wish that everything goes well. Best case scenario will be that there are zero complications & the treatment is effective. Once it's all done, the challenges won't be over. Trachs require around the clock care, so the doctors say we'll need about 10 days of training. The problem though is that Norah is so small, and only weighs around half of the minimum for the home equipment. This will likely mean that she'll spend some time in a special facility until she grows. Who knows how long that will be. Though I have total confidence that we'll be able to learn to care for her, I'd be lying if I said that I wasn't worried about the life changes on the horizon.
It's been a tough six weeks since our precious little girl was born. To top it all off, I just had surgery last week. My gallbladder was causing me some serious problems so it had to come out. Great timing, huh? I'm just glad that's all out of the way so my focus (and Jeff's since he wasn't able to stop worrying about me) can be entirely on Norah. I will say that despite all of the challenges and subsequent tears, I am reminded of how much we really do have, and how thankful I am for it all. I'm also reminded of the courage and strength that has spread amongst our little family of four, and how it grows and makes us stronger in numerous ways. Tonight my mom helped me realize that courage isn't about how brave you feel... rather it's about moving forward despite the urge to run in the opposite direction.
A special thanks (in no particular order) to Grandma Carol, Cranma (that's how Harper says it) Claudia, Greg, Emily & Ryan, and Shelly. On multiple occasions, we've been downright saved by these family members that have been able to help with childcare for Harper, and in some cases even come forward with unsolicited cash to help with these frightening hospital bills compounded with Jeff's unpaid time off work. All of this has been more help than I can begin to describe. And of course a huge thank you to all of the rest of you that have sent so much love and offers of assistance our way - it's priceless. Oh and two more thanks: to Harper for wiping mommy's tears away when she was sad tonight & to Jeff for taking such sweet care of his wife. This would be so much more difficult if our marriage and love weren't as amazing as they are.
Wish us all luck tomorrow.