A Hospital Halloween

Time marches on, whether I like it or not. The days are passing...twenty days to be exact...and life keeps happening outside of this hospital.

Natalie's birthday came and went, my boys put on their costumes last night for Halloween and ran through the neighborhood without me, and Calvin's birthday is on Monday. This is a busy time of year for us for many reasons, but it's usually a fun time of year.

Instead, this year, I'm a little bummed out that we all couldn't be together at home for these big events. Of course, I'm thankful that we still have Natalie with us to celebrate, but that doesn't take away from the fact that our lives are on hold for a while.

Before I get any further into this post, I'll give you an update on Natalie's status. She is such a rock star! Every time the doctors challenge her by dropping her ventilator settings, she reacts really well.

Here are the numbers we are looking at right now:

(f) is for frequency, or respiratory rate; PEEP stands for positive end-expiratory pressure

Tonight, her respiratory rate is down to 10. That's how many breaths the machine is requiring her to take per minute. She's now doing a lot of the work on her own, but if her sedatives and pain medication drop her respiratory rate down too low, the ventilator will pick up the slack. This is one of the reasons they are starting to slowly back off of the medications...because they want her to start making more of an effort to do the breathing on her own.

The second number we often look at and spend much time discussing is the PEEP, which tonight is at 7. A few nights ago, it was at 14. PEEP stands for positive end-expiratory pressure, or in other words, how much pressure is left in our airways AFTER we exhale. A higher number means a higher amount of pressure is required to keep those airways from closing. When she was at 14, I often heard that that amount of pressure is really uncomfortable, especially for a little one like Natalie. Now that we're back down to 7, we're getting closer to the point where she can be safely extubated. Word on the street is that 5 is usually the magic number, so we could be looking at a couple of days from now to get the tube out...fingers crossed.

I should stop here and say that I know for a fact some of the respiratory therapy crew members here have been reading these posts, so I hope I'm not embarrassing myself too much! Ha!

Natalie's other challenge right now is feedings. We are a few days past the insertion of her g-tube, so they've now begun putting Pedialyte through it to test it out. It seems like it's working well, so hopefully we can start putting some good nutrition through the tube and get her digestive system working well.

While these are all big steps, and she is definitely moving in the right direction, she is still far from making her grand exit out of this hospital. She still has to prove herself on room air, and that means baby steps. She'll likely go from the breathing tube back to either the BiPAP or C-PAP or a nasal cannula before trying out room air. We are likely looking at at least another week or so before she'll be ready to go it on her own.

Life will be much different when we leave, but it will be so much easier in many ways.

So, of course, Friday was Halloween. It's sometimes hard for me to understand that these things are happening, when I'm spending most of my time in Natalie's room. Thankfully, we had lots of visitors doing a little reverse Halloween trick-or-treating...stopping by the PICU rooms in costume and dropping off treats. There were lots of fun costumes, including a group of minions.

Our trick-or-treaters

Natalie didn't have a costume this year, but I put a tiara on her for a quick photo-op. What a pretty princess.

My pretty princess

Back home, the boys ran around the neighborhood with Grandpa, their aunt, uncle and cousins. Ahhh....another freezing cold Halloween!

*insert teeth chattering*

Meanwhile, Natalie's manicure has held up for almost a month now, so it was time to try out some new nail art last night.

Nail art on Natalie's beautiful nails

The boys are doing amazingly well traveling back and forth to Fargo. I have them here with me this weekend...and Calvin proudly declares that, "Natalie really needs to hear my voice." (She does.)

Can you find Natalie in this picture? Hahaha!

Calvin loves hanging out in the PICU

He loves spending time in her hospital room. Dexter, on the other hand is a little too "active" to be hanging out in the PICU, so he usually stays at my brother's house when I'm here with Calvin and Natalie.

I am longing for the day when I can wake up in my own bed, then trot out to the kitchen to make my kids breakfast while sipping my morning latte. I can't wait to use my own vacuum cleaner and washer & dryer and get things done around my house. I dream of the day when I can sit on my couch at the end of a long day and sip a glass of wine while Perry and I watch an episode of "Homeland." The big events are passing us by, but it's really the little things that are missing from our lives.

We're making the best of it, but there's really no place like home. I'm tired, so even though I'm not all that impressed with this post (other than the cute kid pics), I'm publishing it anyway. I hope you enjoy it!