Kyle had his infant PFT (pulmonary function test) scheduled yesterday for 9:30am. We were given instructions that Kyle is not to eat or drink anything within 8 hours of the appointment and he should also come to his appointment ready to go to sleep, which meant keeping him up late the night before and waking him up early the day of his appointment.
As instructed, we kept him up until 10:00pm and got him up at 6:30am, and hadn't given him anything to eat or drink since 9:30pm the night before.
Kyle was very sleepy, but still in good spirits, although it was very hard to tell him he couldn't have anything to eat or drink when he pointed to the kitchen and said "na na" wanting his morning num-nums before we left for his appointment.
We picked up Chris at work and got to the clinic where we checked in and got settled. It started out very routine with Kyle getting weighed, oxygen levels checked, breathing listened to, etc. He was good to go! The nurse explained they would be giving Kyle a liquid sedative that would help him go into a deep sleep, but would not put him under. They said it didn't taste very good and there was nothing they could do about that, but that most kids swallowed it down with a little bit of a struggle, but then it would be done. Ok fine.
So we head to the room where the liquid sedation medicine was to be administered and the nurse instructed me to hold Kyle down with one leg while I hold his arms down with my hands. She grasped his cheeks, opened his mouth and started injecting the medicine with the syringe. Of course, he fought it, gaged, choked, but got it down. After we did this a couple of times until all the medicine was gone, Kyle got a strangle look on his face, one I know all too well, and the vomited started. His vomit, because he's a CF'er is very mucousy and thick. Not exactly the easiest stuff to get up. He was crying, gaging, choking and having problems breathing because he was now inhaling his thick, mucousy, medicine mixed bile back into his lungs. Not good.
The nurses ran in with towels both wet and dry to clean him up. I held on to him and got him to calm down and slowly he started to doze off. While holding him in my arms, I could tell he was still having a hard time breathing. His breathing was gurgled and at one point, he stopped breathing. He woke up gagging and I flipped him upright and started patting his back to help. He plopped his head down on my shoulder where I could finally hear his breathing become more regular, deeper and clear. The nurse checked him and said his lungs still sounded clear, so I had a small bit of reassurance that was the end of the worse of it.
The nurses came back in and said because he had thrown up quite a bit of the medicine, they would need to re-administer half the dose. So yes, the terror I had just experienced and the trauma my little boy just went through was about to start all over again. And it did. Exactly as before.
After the nurses left again, I held on to Kyle as he drifted back into sleep and with tears in my eyes said to Chris "I hate that he has to go through this. It just isn't fair." I also told him if this dose doesn't take, I'm taking Kyle and getting the hell out of there.
After 20 minutes, it seemed as through Kyle was completely out of it. Even to the point where the technician was able to take him out of my arms and hold him for a bit before trying to lay him in the machine where he was to have his breathing monitored. But each time he tried to lay him down, Kyle woke up and fought to get out.
At that point, everyone agreed it just wasn't going to happen. I was relieved. Sad we couldn't get the testing done, but relieved it was over. No more medicine. No more gagging. No more vomiting. I could take my baby home.
We all walked back down to the nurses station where they monitored Kyle for about an hour. They wanted to make sure he could keep down water and he wasn't having any adverse reactions to the medicine. We finally left around 1:00pm and I couldn't have gotten out of there fast enough.
The rest of the day Kyle napped off and on, only to lift his head up, take a little sip of water and lay right back down until 7:30pm. Finally, he woke up looking a bit more awake and we got him to take his enzymes and drink some milk. He stayed up for about an hour and even played Lego's on the floor with Chris and I until we put him down to sleep at 8:30pm where he slept solid until 7:00am today.
Today, he woke up as if yesterday never happened. Bright eyed and full of vigor, just like I like my little guy to be. He ate his breakfast well and did so-so at lunch and is now napping.
The only thing that worries me is he's still a bit congested in his lungs from yesterday, but I'm hoping that clears up in the next day or two. We did get a neb/vest treatment in last night and I got one in this morning, too. I'm going to do one after nap and one right before bed tonight. I've also been encouraging him to cough for me when he starts sounded congested. Getting him to run around and laugh helps, too.
Chris told me last night that this could possibly be what it's going to be like should Kyle ever get sick and need hospitalization. God, I hope not.
I just can't imagine what it's like as a mother to see your child experience that. I read your blog and almost forget Kyle even has CF until you talk about his appointments. It so easy to forget how awful this disease really is. I hate so much that he has to live with it and I hate that you have to watch. I wish there was something more I could do other than donate some money. I don't understand why a cure hasn't been found but I pray they find one soon!!!!!
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