mama needs a xanax….

I need that xanax to survive the roller coaster ride that Isaac’s life has become! Just to make sure we all still understand who the boss is, he got sick again Friday night…. He stopped antibiotics for his pneumonia on Wednesday, and he restarted them for what appears to STILL be pneumonia Friday night 🙁
After a nice afternoon nap our troublemaker woke up breathing really fast… like, just ran a marathon fast- only he was sitting on the couch relaxing. Soon enough he started having icky stuff come out of his trach. We are very lucky to have a pediatrician who is readily available, and we were able to start him on antibiotics within hours of him feeling cruddy.
They seem to have done the trick, as he woke up still not feeling great this morning, but hugely improved from last night. We paid our Dr. Carroll a visit, and as he played with his Ipad she was able to deduce that the right middle lobe of his lung is indeed still cruddy.
For some reason, every so often these things hit a mama hard. I wish I could understand why, we are certainly pros at pneumonia, funny breathing and crud coming from trachs. We have had close calls with Isaac a few times (two were a bit too close for comfort, but another story)… but sometimes a typical sick with Isaac can make me lose it – and I felt that way last night.
I knew instantly that there is likely not going to be a capping trial in a week, even if there was Isaac would be set up for failure. I also know that Dr. Preciado’s scheduler told us a few days ago how lucky we were to get this appointment next week, since he is booked through March. Maybe it was the thought of having to wait for someone else to cancel to get in with Dr. Preciado and the loss of control (again!), or maybe it was the fear that comes with anything recurrent when it comes to Isaac – last winter a recurrent pneumonia was rooted in a hole in his lung and esophagus. Whatever it was, it resulted in mama scarfing down a huge piece of chocolate cake, fighting tears all night and generally feeling sorry for us. Mixed in with this was lots of loving and hugging with a sick little puppy.
Today brought better feelings, particularly since Isaac was feeling better. I know his trach will come out, and it will come out sooner than later. I know we keep making decisions, and setting dates – and then the plans change. You would think by now we would be used to that, but it’s not always easy. It sometimes feels like the things we want for Isaac won’t happen, but they do happen – and they ARE happening. Right now it is important to get to the bottom of things (first, with a chest xray sometime this weekend) and make sure he is ready.
A family we have gotten to know well over the years celebrated their Riley’s 7th birthday today, he is in heaven. Another reason to get over feeling sorry for our circumstances? Absolutely. Riley and Isaac were in the ICU at the same time for 8 entire months, Riley was older and connected to an amazing machine that worked as a heart for him. He and his awesome parents would take nightly spins around the ICU, pushing that machine and waving. A lot of us looked forward to passing Riley in the evenings. Riley passed away a few months after we left Minnesota for the first time with Isaac, and we see his parents when we return. They are in a position no parents should ever be in, and they handle it with grace. So, when I start to feel really bad for us I think of all of the parents we know and love, who lost children we know and love – and I am grateful. How can I complain about keeping a trach a few more months and having to sit by waiting for an OR date when other parents don’t have that luxury?
We will email Dr. Preciado with the news later this weekend, and more than likely wait with baited breathe for a new bronch date anytime one comes available. We will overcome our anxiety and disappointment and enjoy the love and unpredictability that Isaac brings to our lives.

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