-Thursday-----Well, we've had our first ED experience. Bentley hasn't eaten great ever since the biopsy. She's been very congested and had a terribly nasty cough. I just want to NT suction her (that's when you stick a tube down her nose and suck all that snot and phlegm out of her throat). Over the past couple of days she has hardly eaten a thing. A couple ounces here, a couple ounces there. Not nearly enough for a kid we are basically having to feed protein shakes so she can gain weight. It finally started to catch up with her. I could only get an ounce or two down her yesterday, and then after I left Lindsay couldn't get her to take anything. Once Lindsay called the pediatricians office all it took was the nurse hearing Bentley breathing through the phone and she said to head on to the hospital.
Conveniently all this occurred during my marketing class last night. I left right after it ended. We got to spend a few hours in the ED. They got some IV fluids going and admitted us for the evening. A great night's sleep, as you can imagine. Bentley actually slept like a rock, she was pooped. Now we're just waiting to go home. The cough and congestion hasn't cleared, and she's still on a little O2, but she should perk up soon. No worries.
A friend shared this poem with me today. She has a child with awesome needs as well, this pretty much sums it up. -I may do a revised version one day, but this one works for now.- We'll see if I ever fly that airlines again....Although Holland is pretty this time of year. Welcome to Holland
Still trying to get the oxygen off of Bentley. She's not any less congested than when we got here. However, she does look a lot better. Yesterday she looked terrible. I'm pretty sure she was running a fever all day long, but her temperature said another thing ---it could have been due to the method they were using to check her temperature, but what do I know? Treat the monitor not the patient, right? hahaha (that's incorrect) --- today the temp is gone, she feels more "normal" and she doesn't have that sick look to her. She's still not eating well. Her stomach doesn't seem to like formula right now. Oxygen on 1/4 L/min (i didn't even know you could measure it at such a low rate) and apparently that's the sweet spot. Turn it off and her sats drop to the 70s. Craziness. Well, let's see how this night goes....
Sunday night --- So it's now heading into night number 5 at the Children's of Alabama. Did I mention we're in the old building? It's not as cool is if we were in the new one. I feel like we're living in a closet. No real improvement to her breathing. Same ole, same ole. While Ken was pulling night shift last night, the repiratory therapist started NT suctioning her!!!!! We've been requesting it all day. It only helps for an hour or so, but its way better than without it. I've learned that they can do pretty much anything to a baby I can do to an adult. I feel like an idiot, but maybe being on this side of things makes you think slower, or just think differently. Whatever it is, I know I should have been pushing for a little more aggressive treatment from the beginning. Honestly, I think my thought process was along that of the ER's and the docs we we were admitted to. I didn't think it was anything that serious. I just wanted her to get the nutrition she needed. We've realized there is a little more going on than meets the eye.
Had a swallow study this morning. They saw that she wasn't really aspirating, but felt as though she might if watched for a longer period of time. I'm sure the lady administering the study didn't word it this way, but Lindsay interpreted her comments about the study as "You've been drowning your baby every time you feed her." Just what you want to hear-- "your killing your kid." --That doesn't help a momma who's already been in the hospital 5 days, has a blind and deaf baby, and maybe some other things going on. ---Again, I'm not saying the speech pathologist said those words, that's just how Lindsay interpreted whatever it was she did say.---
I also love it when people who should have probably looked over certain details in the chart reveal that they haven't. Like when they say "oops, i won't talk so loud, she's trying to sleep." HAHAHAAH I want to say "BUSTED"
The admitting team consulted pulmonology. The pulmonologist had some good thoughts, and he was great talking with Lindsay about some of the options we're looking at. In addition they all read and watched the study. They felt as though she was not aspirating but was doing a lot of work for a relatively small return, as compared to a normal kid. We've known that for a while. She'll suck that bottle for an hour and get nothing if you have the wrong sized nipple on there. So in another attempt at figuring out the perfect nipple size/formula thickness combo, mom bought out Buy Buy Baby's Dr. Brown nipples (this is literally the only nipple brand she will suck, we've tried them all), and we went to the lab (no lab, just started experimenting). Think we may have found one that works.
Next on the agenda, talk to the docs in the morning and decide what's next. We have a few options to think about tonight, ask questions about tomorrow, and take action with our decisions. I won't get into all the things we're discussing but in summary, we may be going home with a few new things that don't sit too well with Lindsay. I completely understand her emotions surrounding them. If you read that poem then you do too, remember, she thought we were going to Italy. However, I'm encouraged by it. I want to be doing something. I don't like this sitting and just waiting it out. Something is better than nothing. But, sometimes taking action can feel like taking steps backward, and I'm afraid that's how Lindsay sees it.
I'll be honest, this is when I really wish Dad was here to offer some advice. I'm confident in my decision making ability, but he was just so smart in situations like this. Most of all, he would have seen this a week ago. He picked up on things so much faster than most people. Fortunately mom falls in love with smart men. Ken is a Veterinarian, and they operate a little differently than people doctors. His brain is not bound by some of the same constraints, allowing him to think outside the box a little more. This is great because it helps me to make sure I'm covering all the bases, and ask questions I may not have thought of or just forgot about over the past few days. I like having people smarter than me to consult with. It makes my job easier.
Ok, back to my marketing project. Oh, and don't tell Lindsay's parents any of this. They actually are in Italy right now and don't know we're in the hospital. HAHAHA sneaky sneaky.
Sorry I got long winded.