Yesterday was interesting. Before the training we did her weekly trach change and, since I did the last one, Sarah got to do it this time. The problem came when we realized that the wrong size trach had been delivered to the room and we had not thought to double check (won't be doing that again :) I took the old one out and Sarah attempted to put the new one in but it didn't fit! There was a mad scramble to get a spare ready and it was soon in place. Sarah stayed nice and calm and didn't panic and Brinley was just fine (though a little blue). I gave her the pacifier and she settled right down. It was a learning experience for sure and, although Sarah did great during, it was in a way the straw that broke the camels back for her emotionally. Pray for her that she will not feel overwhelmed by everything as this is, understandably, something that has the daily potential to be just that.
Today was also interesting (Brinley doesn't give us many boring days yet unfortunately). The last few days Brin's eyes have been doing a strange thing where they wander back and forth when she should be focusing straight ahead. The doctors are looking into what it might be and the words "brain tumor" were actually said, albeit in a highly unlikely case. She did, after all, have her MRI come back normal. They are doing a simple urine test that can rule this out and, although it is still a possibility, we are expecting it to come back negative. Another more likely culprit is that it could be a side effect of the glycopyrrolate (Robinul) that they started giving her to help with her secretions. Uncontrollable eye movement is listed as a less common side effect of the drug and the timing of when she was started on it seems to match up well with when the eye movement began to be noticed. So, hopefully tomorrow we will get the urine test results and rule out the tumor thing then they can talk about the next step.
On the homefront, our girls are doing great. Though there is occasional lingering coughing from them, they seem to be otherwise healthy. I am still pretty congested but I still have energy to get through my days so I'm not slowed down too much as long as I take it easy. Sarah is healthy but we need to find a way to get her some naps to catch up on sleep.
The coming days will see us doing our last day of training tomorrow, rooming in at the hospital Friday night to Saturday, taking delivery of Brin's equipment Tuesday and finally bringing our baby girl home on Wednesday! There will be lots of details in between but those are the larger strokes. We already have many follow-up appointments scheduled so please pray that it would not get overwhelming. Also pray that we can get some home nursing care set up soon to give Sarah some support as I get back to work full time in the not too distant future. We are working on it but it's a process.
Thank you to everyone reading for taking the time to read about our adventure. We've been so blessed with awesome nurses and doctors taking care of our baby and by such loving and caring friends and family taking care of the rest of us. And we're especially blessed to know a God that is always faithful:
When you pass through the waters, I will be with you;
And through the rivers, they shall not overflow you.
When you walk through the fire, you shall not be burned,
Nor shall the flame scorch you. -Isaiah 43:2
God is true and we will see total victory! We stand with you and Sarah and expect nothing less than perfection for your precious daughter, God's Princess!
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