Ever have a day that is so lame, the only cure is a nap and a 'do-over!?' I got to enjoy one of 'those types of days' today, (update: yesterday!) We packed up problematic free and headed down the street to get Andi's blood work done and to see her pediatrician. He liked the way she's looking. Her weight, height and head size (an important measurement for babies with CHARGE) are all increasing nicely. However, we're still well below average on the charts. I told someone it's like her first three months didn't count, as she was working so hard. It doesn't seem fair to chart her among other kids who haven't endured the seven layers of hell. But I'm guessing that's the only way we can compare her data to see how she's truly progressing.
Weight: 9 lbs, 15 oz's (1.42% on charts)
Height: 22 inches (1.65% on charts)
Head-Circumference: 15" (1.46% on charts)
Now, considering what she's been through?... she's doing GREAT! She was born 5 lbs., 6.2 oz's - and forever stuck at 8 lbs. Now, she's just under 10 pounds! She was born 18 inches, and is now 22 inches. I don't know about her head circumference, but, things are progressing! She got her vaccines for 4 month olds too, uhm, she didn't really like those. She's been referred for another eye test, as when they initially tested her, they said they wanted to see her again at four months. Last week she had a hearing test up at the hospital. It showed that she has "profound" hearing loss in her left ear and "moderate" hearing loss in the right ear. They want to test her further, the second stage of defining what she can hear, so we can fine tune her hearing aid(s). I am not sure she'll ever be able to hear out of her left ear.
Anyhow, we fled the appointment with visions of progress, things were okay. We got to the truck and I pulled out her feeding backpack from the bottom of her stroller -- she was half-way through lunch, and pulled out her oxygen tank and set it closer to the truck - so I could load her up in her carseat. I don't know what happened exactly, but while I was trying to load her up into the car, I think the oxygen tank fell over, onto the feeding tube, and pulled the G-Tube right out of her stomach. My worst fear was playing out before my eyes. I was told that if it ever came out, we didn't have long until the hole closed up, we had to act fast. I threw the O2 tank back into the stroller, the feeding bag, started off without my purse, but decided to grab it, and ran. I ran harder than I ever have, especially in flip-flops. With visions of another surgery to fix this, I ran faster. I hightailed it through the parking garage, through the parking lot, in front of a car that looked like it didn't want to take the time to stop. I ran into the sliding glass door that wouldn't open fast enough for me. I ran down the long hallway, my lungs were beginning to burn. Without looking, I saw this man up ahead jump along the side of the hallway, as if to brace himself up against the wall, because this frantic Mom was coming at him like a freight train. I was, and I was pushing about 60 lbs of gear. As I ran by, without even looking at him, I heard him say 'don't worry, it's okay to be late' or something like that. I didn't even give him acknowledgement or a response. But that one little sentence has been stirring in my head, eating at me. Some people just have NO idea what others are going through. It's rude to assume, and as my Mom used to say "to assume is to make an ASS out of U M E." I threw open the door of the pediatricians office, almost taking out some poor guy standing there, although I did mutter a 'sorry!', and said to the nurse at the desk, "I need help!" gasping for air I continued, "I pulled her G-Tube out!" Just about then her pediatrician came up and said he'd take care of us and within minutes, our superman put it back in and saved it. I honestly was shaking, crying, sweating, panting and had another mini-meltdown. It was my worst nightmare and it happened. I was beyond scared, I was frantic. I carried her back out to the car holding her and pushing our collection of crap in the stroller. I'd fled without her blanket, so I used my jacket to wrap her up in. I apologized another thirty times to the Bean, whom didn't really seem to care. Well, I did. I felt horrible. We got home and took a little nap, because after a day like that, we needed a do-over. It was one of those instances where I wish I could've been a little more on top of things, to prevent it from happening, 'if only...' ran through my head. The self-torture that we all seem to do. It sucked.
Last night, things seemed to be going okay. Her 3 p.m. and 6 p.m. feeds went okay. But around 8 we determined that she was feeling pretty hot and getting pretty fussy. I took her temperature, another 102. We stripped her and put a cool compress on her head. We ended up paging her pediatrician, whom at times I feel he should really have his own speed dial letter assigned on my phone. He said he thought she was possibly having a reaction to the shots, and to give her Tylenol. I realized that the last time I saw our almost empty bottle of Tylenol, we were at the hospital with a fever. I had to run to Rite Aid. I got both Ibuprofen and Acetiminiphin, as requested by the Dr. Although I must say, I spent way too much time looking for Children's Tylenol to finally hear from the pharmacist that they still don't stock it since the last recall. I just had to throw it out there that I was given a bottle by the hospital just a month or two ago. Well, I was irritated and frazzled. Her fever came down, but when we started her overnight feed, she was screaming. We paused the feeding and I gave her some of her med's that were now late, the diuretics. We waited. We stayed up with her and on the phone repeatedly throughout the next few hours with her amazing Dr., and he determined at 11:15 that it was late enough to give her her midnight dope, the heavy junk. We gave that to her, started her feeds, and she konked out and slept on my shoulder in the recliner all night long. She seemed fine and I probably could've taken her down to her bed, but after the day we had, I felt more comfortable being super close and holding her tight.
Here it is morning, and I have a gazillion hours of work to do. We received a check-up call at 6 by her Dr., whom we can't say enough great things about. The Bean was fussy this past hour, but, has since got her heavy dope again, and is out. I took her temperature again this morning, and it showed normal. She's breathing hard, but she's been doing that for a few days. Hopefully today is much quieter, that'd be great. As in the game of golf, depending on who you play with, you only get one mulligan per nine holes. Let's hope we don't require another do-over anytime soon!
Wow! I can't think of anything else to say but WOW! I'm so sorry that you had such a rough day! Sounds like you handled it like a champ though! (I would've held her all night after that too; I'm sure it made you BOTH feel better)ReplyDelete