The last few weeks have been very busy with appointments and working out solutions in a few different areas.   If you care to know the details, I love to chat.  There have been questions, praying, solutions, waiting, worrying, rocking, healing, pain, suctioning, sitting, and more waiting.

Noah’s breathing had gotten worse over the last month, and when we saw his ENT doctor, she wanted to do surgery to help his breathing.  It was going to be scheduled a month out, but then she called and said she could do it tomorrow.  24 hours later he was being operated on, and 24 hours after that he was breathing so much better!!  He has had several free from oxygen nights!

When they sent us home with oxygen a year ago, they made it sound like it wasn’t a big deal.  It has been nothing but a big deal.

I will not miss going to “plug in the baby,”
I will not miss untangling tubes and wires.
I will not miss the clink of oxygen tanks when I step on the breaks, or realizing a tank is empty and having to leave wherever we are to get one.
I will not miss those nights I am up wrestling a half sleeping, and desaturating child to keep his cannula in his nose.
I will not miss watching him with one eye as he tosses in his sleep, knowing that the moment I close my eyes is the moment he will pull it out.
I will not miss researching better tape or sleeping solutions.
I will not miss little balls of tape in the laundry.
I will not miss the noise, the noise of the concentrator, or the noise of his squeaky breathing and snoring.
I will not miss well-meaning strangers pitying looks, comments or questions about my son’s medical history.
I will not miss watching my baby sleep worrying he is getting oxygen.
I will not miss bolting out of bed from sleep when the alarms are screaming, as I race dying brain cells to fix the problem.

I look forward to 3+ hours of sleep at a time sleep.
I look forward to going on off-trail hikes with the boys with Noah in the baby carrier.
I look forward to watching my son sleep, memorizing his face instead of checking his breathing.
I look forward to feeling tiny sweet puffs on my neck as he may occasionally nap on mom.
I look forward to letting my vigilance switch to other things.

I am currently sitting in the hospital for the 2nd time after surgery with Noah because he caught a cold and led to aspirating his tylenol, much crying, and refusing everything by mouth.  He is on the upswing, and hopefully we will be home soon.