I've been whining a lot in my last few posts because we've all been sick and I'm really tired of things being difficult for us. But, today I was reading one of my favorite blogs, "Life Since Harlie" (Harlie and Faith were born a day apart, both with Goldenhar Syndrome), and I gained some much needed perspective. Harile went through a major jaw surgery about 9-10 weeks ago, where they took bone from her skull to graft into her jaw and had her jaw wired shut for 9 weeks while it was healing. She went in to get the wires removed this past week and it turned into a serious life and death emergency. Thankfully she got through it, but she went into cardiac arrest during her surgery. My heart ached so much just reading her mom's posting. Harlie has an infection in her bone and will go home on IV antibiotics for 6 weeks. And I'm whining about Faith going home on oxygen for maybe a week or so and doing nebulizer treatments twice a day? Yes, that is more than most people have to deal with, but as always, it could be even harder and I need to focus on getting through this instead of focusing on life being hard.
Faith is pretty much back to her normal, happy, self, just with oxygen tubing following her around everywhere. I'm hoping we can start weening her down a bit over the next few days as she seems to be very stable now. The hardest part right now is that the antibiotic she is on is giving her very bad diarhea and she screams bloody murder when I change her diaper. I feel just awful making her cry like that but obviously I can't just not do it.
Here's hoping things are a little better next week and special Valentine's Day wishes of love being sent to Harlie. Get better soon!!
Robin
2 comments:
Well, Robin, ALL of us should always keep in mind that no matter how bad things seem for us, they could always be worse. At the same time, I think we all can understand how you're feeling when things just PILE up on you. So happy that Faith is improving, and hope that the rest of you will be getting better soon, too.
I'm praying that the job situation will start looking up soon for you, too.
That just makes ones heart ache for little Harlie. I wonder why they used skull bone as opposed to rib. I hope and pray that her situation will improve immensely very soon, as well.
Hugs and kisses to all of you...
Love, Mom
Thanks Mom! Different doctors take bone from different places. Most of the doctors we consulted with wanted to take one of Faith's ribs to do a bone graft with, but we talked about taking the fibula bone, and I've heard of taking the scapula (sholder blade) and the iliac crest (front part of the hip bone) and I've heard of doing the craniotomy (skull bone) as well. The risk of bone grafts failing is one of the reasons I was so glad when Dr. Gordon felt he could do a distraction without a graft first, but the results from a successful graft can be more substantial and immediate, so it's all the things you have to weigh in choosing the best choice for your child.
Thanks for all your nice words and good thoughts. Robin
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