Hello! It's been a while since I've written and I apologize, but I've been in a fog lately...trying to catch up on some sleep (if there is such a thing) and regain some normalcy. I've also had a raging headache the past two or three days, but I think it's been allergies. There was a story on the news about how this summer is the worst it's been in YEEEARS for allergies. But, miraculously, my headache disappeared a few hours ago. ALLELUIA! Plus, finally I have something interesting to write about other than I slept, I ate, I showered, I loved on Aiden, I changed Aiden's smelly poopy diaper, I sang Aiden to sleep, I fell asleep. NOT that I'm complaining in the least, but it's not the most exciting read.
Anyhoo, today I slept, I ate, I showered, THEN we headed to Children's Memorial Hospital in Chicago with the Luv Muffin. This was a last minute appointment with Aiden's surgeon, Dr. Patel. His nurse called, I believe Monday, asking if we wanted to see him and ask any questions about his surgery coming on the 9th...and I jumped at the chance. I've been a nervous wreck lately...perhaps another cause of my terrible headaches...and I figured that talking to Dr. Patel could ease my nerves. Also, I wanted Aiden to be fresh on Dr. Patel's mind....I think it helps to have a connection as he's operating on my angel...that's just my gut feeling and opinion...
When we got to the Craniofacial Center, (Juan, Nurse Sandy, Aiden and I), Aiden had his usual mini-freak out on the elevator. Perhaps it reminds him of every other doctor's office. I don't blame him. But all we had to do is distract him by having him "KNOCK KNOCK KNOCK!" on the elevator wall. Works like a charm! Once we got into the office, Aiden was a happy Luv Muffin. I am soooo not used to him being a little boy...what happened to my little baby???? He was ALL OVER the waiting room, chattin' it up with some of the other little patients waiting along with us. (minor exaggeration) He was playing with the toys, looking at the adults for applause as he played the toy piano. Enjoying the magic mirror. It was GOOD TIMES! Finally we were called in.
First on the agenda...pictures!! Before surgery photos. Oh my goodness, Aiden was such a ham. The assistant, of course, fell in love with the Luv Muffin. He did his muscle time and showed his version of the sign for 'papa' by punching his eye (teehee). He was ON! Everyone kept commenting on his luscious curly hair. "OH! Look at that HAIR!" :-D Then we talked a little to Dr. Patel's nurse, Alma. She brought in a doll with the distraction device in place along with the "screw driver" to show us what we will be doing after the surgery. It didn't look horrible. She did tell us that we should give Aiden some Advil an hour or so before sneaking a "turn" of the pins as he sleeps. She said he may wake up and cry a little, but he'll most likely go back to sleep. I'm soooo nervous about the whole pin turning aspect!!! UGHHH! I think I'll have Juan, the stud, do it....I'm such a wusssss.
Finally, the wonderful Dr. Patel came into the office. His first words were, "Whoa, he's gotten so big!" and he was genuinely surprised. Aiden has had quite the growth spurt since the last time Dr. Patel saw him. Then he sat down to talk to us and answer our questions. He told us all about the procedure....about cutting the jaw bone, placing the plate, and where the pins would come out above his skin. They will be low beneath his ears...they will dangle kind of like earrings. I asked if any kids ever pulled at them or dislodged them, and he said no...but little siblings have. EEEK! He told us how we would turn the pins once a day for two weeks and then come back to measure the jaw and see how he's progressing. Most likely we will have to continue turning the pins for another week. After the pin turning, he hopes to remove the pins and let the skin heal above where the pins were to avoid any 'more' infections, because the trache is mostly ALWAYS colonized with bacteria...and with Aiden, possibly MRSA. The sooner it is closed off (the wounds), the better. Then we wait....and wait...and wait. Possibly three months...for the bone to finish regenerating and hardening. How ever long it takes, I say! Towards the end, Dr. Patel wants to check the bone strength and structure to see if he can do two steps at once. After three months, Aiden goes back to surgery to have the plates removed, and if the jaw bone looks healthy and stable, he may go ahead and place the second plate for the second phase of his jaw distraction. The first phase is moving the jaw forward...the second phase is moving it downward, to give it that L shape we all have. If his jaw bone doesn't look stable, we may just have the first plate removed and wait a while...perhaps 6 months to start the second phase. I will trust his opinion! We found out Aiden DOESN'T need any blood work done before surgery...thank GOD...and he DOESN'T need an IV treatment for proactive MRSA antibiotics before surgery. He decided to have Aiden take Bactrim...an oral (which means thru his g-tube) antibiotic two days before the surgery for 10 days. No blood work and no IV was welcome news and such a relief!!!!!!!!!!!!!!
After Dr. Patel finished telling us about the procedure and what to expect, I asked a few questions. I wondered about failure. He said there is a possibility of failure in EVERY surgery, but not to dwell on that...and that it's rare. I asked him if his jaw will continue to grow after this procedure, and he said we wont know till he grows. He may indeed need further surgeries down the line. He told us to consider this something to help his airway and to get the trache out. He reminded us that what he needs to do is pretty much grow Aiden a lower jaw. It's almost non-existent. It made me realize that this procedure wasn't the end of the line...but an important step to allow Aiden to eat and to talk and BREATH. Dr. Patel also told us NOT to expect Aiden's jaw to be able to open that much more than it does now, especially after only the first phase of the jaw distraction. He may need joint surgery later on. But we wont know till all is done. I truly believe Aiden will be okay...that he will sail through this part with flying colors. Our main goal at this point in getting that trache out!!! In case you didn't catch this link in my very first post...here's a website telling all about the jaw distraction...http://www.pedsent.com/surgery/swfs/distraction/distraction.htm
After our appointment, we headed home and fed the starving Luv Muffin. He started walking around pointing to his g-button as if to say...HELLO!!! FEEEEED MEEEEEE! Juan went to Ivan's school for a "walk thru" and Aiden and I had a hilarious evening together. Goodness gracious, Aiden makes me laugh OUT LOUD! He was belly laughing because I bounced this hard ball that had like a metal ball inside and it made this weird sound. I never saw him crack up like that before. What a sense of humor he has. When he hides behind me and I say, "where's Aiden???" he'll slide around next to me with this big toothy smile and laugh when I say "THERE he is!!!!" Ohhhh, I love him sooooo. I never want to forget this age and the silly things he does. I wish I could record it all! Wait...I almost forgot to share THIS story...before Aiden's bath, I took off his diaper and foolishly allowed his to run around for some nudey time (GrammaDonna would be proud)...little did I know, he had to pee, a LOT. We had our first major peeing incident. PEE...EVERYWHERE!!!! Poor little fire engine...poor mini grand piano leg...POOR FLOOR! I probably shouldn't have shrieked....he'll probably have a serious complex now...but it was more of a laugh. A laughing shriek. I'm sure that'll be a story that I will share with Aiden's future girlfriends....heh heh heh!
Murphy, the puppy is doing very well...eating food! He's getting bigger...more alert...VERY playful. He's like a little baby, though. He wakes up in the middle of the nite, crying...needing to go potty. Then he wants to play before he goes back to bed. He's so darned cute. I love when Aiden sees us holding him and he'll put his arm out as if he wants to pet him...and when we put Murphy forward so he can reach and pet him, he runs away. I dunno why. A little apprehensive, I suppose. It didn't help when we let Murphy crawl on Aiden's bare legs...those little nails are sharp and prickly! He did his little cry and whine.
Anyways, I can't believe I typed all of this without Murphy waking up and crying...KNOCK ON WOOD! Aiden is done eating and sleeping peacefully. Tomorrow we have no appts...I intend to sleep the day away...again! I feel like I need to store up sleep and energy for Thursday, because I KNOW we wont get any sleep the days and nights we are in the hospital...that's a given!! We must stay healthy! Well, good nite! and sweet dreams!
No comments:
Post a Comment