Add another med to our list…

Yesterday, Gavin and I spent hours outside playing in the sprinkler…

Knowing that bright and early this morning we’d be here…

Gavin had his third round of infant PFTs this morning. And because the little ones are sedated for this procedure, we checked into the hospital at 8 a.m.

Not too difficult to tell that we were in a pediatric section of the hospital…he definitely got hooked up with some toys.

As a parent of a CF child, you have to find humor in any situation…even when you’re little one is being admitted for the day for testing.

Because Gavin needed to be sedated (they don’t use anesthesia, just a med that helps him sleep “more soundly”) there can’t be anything in his belly and he needs to be tired so they don’t have to use a lot of sleeping medication. Which means, we bring him in sleep deprived and food deprived. No food after 2 a.m., only clear liquids until 6 a.m. and try to keep them up late & wake them up early so they are exhausted by the time they get to the hospital.

This part is just as fun for the parents, as it is for the kiddos.

For awhile, we were able to keep him entertained in a small toy area. He wandered the hallways, and waved hi to all the nurses, but before long we hit this point…

The medication to get Gavin sleeping is given to him via a syringe. Every time, until now, he willingly gulped down the meds without a second thought.

Today, not so much. He screamed as I held him tightly while the nurse made him drink three different syringes of foul tasting medication. And because kids his age start to feel funny when the meds kick in, but they’re not sure why/what is going on, they tend to thrash about until they fall asleep. Gavin was no exception here, he cried & thrashed until bam! he was out like a light.

Today’s round of PFTs went uber quickly. Casey and I ran to get coffee and a bagel, and by the time we were back our little guy was back in his “room” sleeping off the meds.

After about 45 minutes of “napping” it was time to wake up. He’s a stomach sleeper, so usually rolling him on his back gets him awake.

That did not work at all this time.

 

(his pulse ox)     

 

So what did he do when we rolled him over onto his back, in an attempt to wake him up?

With this look on his face

And finally, after slurring “Hi Ne-Ne (daddy)” our sluggish little guy started to wake up…notice the Elmo sticker a nurse hooked him up with…with the help of a cool washcloth rubbed on his face.

Watching your kiddo wake up from sedation can seem humorous…well at least if you have our kiddo. (Like I said, you gotta try to find humor in the situation) While he had very little control over his limbs, or head, and slurred his “speech” he managed to have that silly little grin on his face….

or a look of…wtf just happened and why do I feel so crazy?!?!

Before we are allowed to leave, Gavin has to drink & eat something. I brought a bottle vs a sippy cup knowing it would be more comforting. He could barely keep his eyes open, but he slowly chugged it down.

The results were much better than last time. His FEVs 0.5 were back up to well over “normal” at 102% but he does still have some air trapping.

This means that when he fully exhales he still has air “trapped” in his lungs. It’s a very small amount (he had this the last time which is why they had added Mucomyst), and our pulmonologist stated that most clinics would do nothing about it since his FEV’s were so great. But, because they are aggressive with his care they added an inhaler (Flovent) to his regimen of medications. He will use his inhaler 2x a day, right after he completes a vest treatment (will post more on this and how he’ll use it at a later time).

We’re hoping that his trend of adding a new med each time we go in…ceases! I know that as he ages he’ll get more and more meds…but let’s hope this is it for a good long while! (KNOCK ON WOOD!)

Gavin is still out like a light, so I’m going to try to take this time to get some stuff done around the house!