Latest Update...Take 2.

At 8:00 A.M. I received a call from the ENT's surgery scheduler telling me that they had rescheduled Jaime's surgery for Dec. 13th, which was exactly ONE DAY AFTER the 30 day "pre-op" mark. What did this mean? Well, that Mr. Jaime would have to go through the entire pre-op process again...ummm.....yea, I don't think so! I told the girl she could schedule it, but I guaranteed her that it would NOT be happening that day. By about 10:00 A.M. I realized that I'm due to go to a week long training class for work, starting on Dec. 13th, so I called her back leaving her a message saying that we can't schedule surgery that day. By noon, I was talking with her again and she said, "we'll just do it sometime next year, maybe Jan. or Feb." I told her that I refuse to have my son on antibiotics for that long and that something else needed to be done. I told her to call Jaime's pulmonologist to see what he had to say. Moments later the phone rang again...Jaime's Pulm. was very upset at the mere thought of waiting that long to do his surgery...so, he told her that it will be done early on Dec. 1st. YEA! This goes against anesthesia's 2 to 3 week plan that I was told yesterday! I'm so happy that someone's up there advocating for Jaime besides me! His Pulm. is wonderful...he will be doing the bronch and ENT will be doing the tubes at the same time. Meanwhile, Hem/Occ will be monitoring his Factor levels and anesthesia will hopefully be keeping Mr. Jaime safe and comfortable during the whole thing! ;)
Dec. 1st works good for me (probably not Tom, as it's concert season, he'll be too busy with his schools to be there), but I'm off that day AND Dec. 2nd because Jaime was supposed to have his 6 month airway clinic follow up appointment that day (in which we've now postponed until Jan. 6th). I had requested the day off already! SOOOOOOO......let's hope and pray that Jaime's antibiotics work their magic and keep him healthy enough to "pass" anesthesia's requirements in TWELVE days! ;)
As for how Jaime's feeling...he's doing well! His cough is MUCH better! All he needed was a few doses of antibiotics! :) His liquid intake is still down, thus creating less urine output, but otherwise he's well. He's eating a bit more than normal, probably because he's not sucking on his sippy cup (it probably hurts his ears to do that). Too bad, his food amounts don't really give him much in the way of calories. I'm hoping that once Jaime's post-op, he'll feel better enough to eat/drink and start gaining weight again.

On a "fun" note...Jaime has been home bound for several weeks now, other than for drs. appointments, so tonight we decided to "air" him out. I don't want him to think that every time he gets in the car that we're headed to the drs. where he'll be poked and prodded and since he just received his Synagis shots, it was a pretty "safe" time to go out. We had dinner, then went to Mitchell's ice cream for dessert. Well, the Beachwood Mall is by Mitchell's so, we decided to hit a store or two that we don't have in our "local" malls. After walking in through SAKS, we saw big Christmas Trees. Jared was so excited that the mall was decorated for Christmas already. I told him that there was a good chance that Santa was there...lo and behold right down the hall from SAKS was Santa. The "elf" (ironically named, James) told us that tonight was their grand opening this year and that we were the first ones to see Santa! Jared was super excited. He and Jaime (so not prepared for a Christmas photo) ran up to Santa. There was no one in line, so the boys had an unlimited amount of time with Santa. Apparently, Jared said that they were talking about things that both boys wanted (he created a list of things for Jaime) and Santa said his elves could make anything, that even Legos wouldn't be a problem. Of course in the car I explained to Jared how Mrs. Claus had the final say in what toys were actually delivered as SHE'S the one who "packs the sleigh." (Indeed she is, only 3 "toys" from Santa for each boy...Baby Jesus received 3 presents that day and so do they!) Anyway, I got a photo for Christmas cards...but here's a sneak peak at the cell phone pics we took! It was nice to be the first ones to see Santa...even though it's not Thanksgiving yet...Jared thought it was the coolest thing ever. I told him that Santa always remembers the first kids he sees that year...and I reminded him that he'll be keeping a special eye on he and Jaime to make sure they're good! ;)



That's my update...much less bitter than yesterday's...I'm just glad that I'm not the only one fighting for my son...I've got his pediatrician and pulmonologist on my side! Coincidentally, they are the two who are the head of Jaime's medical team here in Cleveland.
Wishing everyone a wonderful weekend...my goal is to finish up the report part of my senior project and take a little breather by Sunday! ;)