The timing of the oximeter couldn't have been any better because I needed to take Abigail and the machine to St George to get the results read by her pediatrician-well it just so happens I was going to st George the next day for her vision appt anyway and weight check with my pediatrician anyway! So they came and set us up with the machine that day! (2 days ago-5/22/13). So from about 2pm on 5/22 to 2:15pm on 5/23 Abigail was on an oximeter. Since shr was hooked up, she didn't leave the little corner of our house that has her swing in it. We slept in the front room and everything. I could have taken the monitor around the house with me-but the wires were just such a pain that I didn't. We did get some good information from that though...more on that later.
Yesterday, after we dropped off the oximeter (my baby was finally wireless again) I took Abigail to the eye doctor. This doctor, Dr. Terry, was a very nice guy (and extremely handsome). He said that she is slightly more farsighted than those of her average peers-but let's be honest, when has Abi ever been like her average peers? I mean, seriously- so that didn't shock me. But he said its not something he is super worried about right now and we'll check again in six months. I knew there wasn't going to be much he could do now, though it is nice to know nothing major is pressing right this moment. After the eye doctor visit we went over to her pediatrician who read the oximeter results and got worried since it showed she de-saturated (her oxygen levels went down) quite a bit. So he ordered her to be put on an oxygen tank and called Dr. Meier-her E.N.T. - Dr. Meier was impressed enough by those results also that he wants to push through with the surgery-NEXT WEEK! So Abigail will have throat surgery next week at primary children's. The operation is called tracheoplasty which translates into "plastic surgery of the trachea". Basically, they will go in and take out the flappy part of the trachea, and, to my understanding, put in a more rigid part in its place. As scary as surgery sounds I am way excited this was the end result. When I knew surgery was an option, I, in my heart, felt strongly that this was the option we should pursue. With this surgery she will be able to breathe better, therefore eat better, therefore have more energy to grow and maybe control her muscles better. I truly didn't understand to point in waiting for this one. This malacia is obviously something that she is struggling with, and instead of making her wait 2 years to "grow out of it" like everything else she is dealing with, lets deal with it now! So yes, don't do surgery unless it is necessary, but I think this has way more pros than cons. The ONLY con is that it's a surgery and with that come he normal potential complications-but I know we are making the right call here.
Until we get that surgery, however, she will be put on oxygen. More wires. We just barely picked up the oxygen from the healthcare place, learned all about it and how to use it, then put it on her and BOY WAS SHE MAD!!! We stopped to get gas and her dad got back in the car after pumping it and said "a lady out there heard Abi and her eyes got real big." Haha that's funny! I honestly thought she was never going to be able to fall asleep. I'm sure it's not hurting her, if anything just kinda freaking her out, like "what the crap is this, and what's it doing in my nose!?" I don't know if I've said this is another post of mine, but she HATES her nose being bothered even just anyone touching it-I can only imagine the loathing for this thing. Right now she is finally asleep (mostly-every so often she'll make a frustration noise, but overall things are good.Honestly though, for a minute I doubted if this oxygen was really better for her because it made her so so SO mad and when she is mad is when she goes into those breath holding things. So at very first I was like "the oxygen tanks are doing more bad than good!" But we'll see if she gets used to it and calms down a bit. Poor girl.
Also yesterday we decided to switch her formula to the pre-broken-down stuff because I have to fortify my milk with it and the regular stuff just hurts her little tummy SO badly. My doctor gave me a HUGE bag of similac alimentum..I knew she didn't like similac last time we tried to give it to her so I wasn't expecting her to like this one-but he was giving me a BOAT LOAD and I wasn't about to be the ungrateful, nose-up, picky mom. I was very grateful and was just hopeful she wouldn't mind it since it would be easier on her belly. Well, she didn't like it, AT ALL. She would latch on and suck for like maybe 5/6 seconds and then scrunch her nose, pull off, and yell at me. "What do you think you are trying to feed me, mom? Where's the good stuff? Where's the beef??" - that's what I imagine she would be saying anyway. After much of a fight put up(and the longest bottle feeding ever) she did end up taking 3 of the 4oz, so I was okay with that. I didn't want to be picky with the doctor, but now that I tried it (twice.. I didn't give up after just one feeding-it happened two times) I will call and ask if he has any nutramigen he can share-ill even trade him! I may go pick one up from the store first though because I do think its worth it to get her started on the stuff that would be easier on her belly sooner, and what's $35, right? Haha
So, nothing major in the eyes..we'll see how the oxygen quest continues and surgery next week. The good news is we are only gonna be dealing with the oxygen until the surgery-so the sooner the better!
Until we put the oxygen in/on her she was having a pretty good day! She would eat, then I'd lay her belly down on her boppy pillow and she would just chill and look around till she got a little fussy. I would then put her in her swing and, after a bit of fighting, she went to sleep! I also got her to follow her backpack for a small second! Her backpack is a black and white pattern-I don't know why I didn't think about that before! But she totally focused on it and even followed it moving once! Awesome!
So overall good day. She's back awake fussing with the oxygen now. Let's see how this goes.
Oh, and according to my sister Margo's contact on a Facebook page with other parents who's children have epilepsy, these extra complications are NOT related to her epilepsy. These are all AbiNormal conditions..What can we all expect though, right? :) I wouldn't have it any other way!
This is AbiNormal.
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