Not Going The Way We Hoped

Since my last post, lots has changed. Unfortunately, Alayna hasn't responded to the oxygen through the nose all day long. Her stats have been low and they are now thinking that she definitely has pneumonia. Dana and I believe it too. Around 5:45 pm they did what is called a CPAC (Continuous Positive Airway Pressure) by using a NP tube (nasal pharynx). It is basically a type of ventilation that puts pressure down lower in her airway to her lungs so she doesn't have to work as hard. She now has another tube in her left nostril. They added another tube in her right nostril that goes directly into her stomach to help relieve the pressure or air that would be storing up. It would be like a balloon and we wouldn't want it to pop, so it needs a place to release pressure. She has tubes everywhere and cords everywhere. It's impossible to hold her right now and I'm longing to give her a good squeeze and just cuddle her.

I am saying my prayers hoping she responds well to this. Her oxygen level needs to remain above 88% and above 90% would be ideal. At this moment, she is maintaining between 90-95%. But again, it seems like it is all moment by moment. She had another blood gas test and it came back fine which was relief. If her gases get out of whack and she doesn't respond to the CPAC, the next step is to move to the PICU (pediatric intensive care unit) and be intibated. Please keep praying that she will hold her own to buy some time for the antibiotic to kick in. It usually takes at least 24 hours to see the beginning effects and that won't be until late afternoon tomorrow.

She had another x-ray about 45 minutes ago and I've yet to hear the conclusions of it. I'm imagining it probably looks pretty similar to earlier today. And if it looks worse, I don't want to know. I asked the nurse to give her Tylenol to help relax her and she did. Alayna is listening to some elevator music right now and taking a good nap. The bad thing about the CPAC is she drools a lot out of her mouth due to the increased pressure and I'm constantly standing at her bedside to suck it up with the "sucker machine." My feet are killing me. I wish I had a bar stool that would be high enough for me to reach her and sit at the same time!

There are many questions that I have. And of course, hindsight is always 20/20. I'm just doubting the decision that was made to hold off on the antibiotic until today. I know that Alayna has never run a temperature, but I'm thinking all kids are different. I'm not a doctor, but I would think that using an antibiotic as a "preventative" to cover the bases so to speak would have been the better approach. I'm feeling very frustrated and tired. I feel like we are swimming upstream against a huge current with a twig as a paddle. I'm sure part of my frustration is out of pure tiredness, but this is day 6 and I've yet to see any improvement. It seemed like we took 3 steps forward yesterday and now we took 10 steps back. As a mom, I'm learning to trust my instinct more, but at the same time I have to trust the professionals. It can be a hard thing to balance sometimes.

I'm thankful for my little girl being here with us. Tomorrow is Thanksgiving Day and she will be here in Iowa City. The turkey will wait for her a different day. She can't eat it anyway. She only has 4 little teeth. And she can have some mashed potatoes when she gets to feeling better. Of course, I wish we were home all together, but I've got to look at the bigger picture here. We all do. Last Friday night, she gave us a scare of a lifetime. She is here, she is going to be okay, and I am truly thankful for that. It hasn't been an easy battle, but she is a fighter. May God bless her and may God bless all of you and your families. Hug each other tomorrow and tell them how thankful you are to have them in your life. Happy Thanksgiving everyone.