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Happy to be HOME!!!

After 10 days (4 in the PICU, 6 in step down), Jaime came home from Rainbow's Thursday night. The final diagnosis was aspiration pneumonia. I was really tired and there was so much to do, I didn't have time to post. Jaime came home with his feeding tube again for night time feeds, however, Jaime wasn't been too interested in eating yesterday, so we've actually used the feeding pump twice during the day. Over all, Jaime is better, but he's not 100% yet. He threw up 3 times yesterday and had 2 blow out diarrhea diapers and one "normal" poopy diaper. His tummy still isn't used to the volume or the thicken agent. Poor guy!
Jaime had to see his pediatrician yesterday at noon...GREAT NEWS to report Jaime is FINALLY 12 lbs! OK, 12lbs .03 oz. He's now on the chart for his adjusted age which by the way is 17 wks old. (his real age is 23 wks-5 3/4 months).
So, let's talk about last night...Tom and I set up the pump for continuous feeds...everything was going GREAT...so we thought. Then, at 6:00 A.M., when the pump was "completed," I disconnected Jaime from the pump and changed him, he was acting like he was starving, this was unusual for someone who just spent the night on the feeding pump. Well, as I lifted his bottom to pull the diaper off, I found a soaking wet little boy. That little stinker pulled his NG at some point during the night. ARGH!
So, we gave him a bottle with his "Simply Thick," just after he finished it...a huge blow out diaper of diarrhea. We were told that this could happen with the thickening gel in the formula, but this is ridiculous. So, Tom and I have decided to thicken his formula with Rice. This WAS an option at the hospital, but it constipates him and we didn't want that. So, now we're hoping that if we use a combination of the two types of thickeners in every other bottle, that it will keep him "regular." We're going to buy rice this morning to try it. Poor guy needs a "normal" tummy. Also, we'll have to reinsert the NG today. This is always sooooo gross and scary. We have learned that Jaime cannot tolerate the 760mls that he's supposed to have, so unfortunately, we're going to have to slowly build him up to it using his night feeds to do so. Looks like the NG is here to stay...at least for a while, anyway!
As for his cough, well it's still there on and off. Sometimes it gags him, sometimes not. He still has some thick secretions...we know this because when we've been checking his aspirates (stomach contents) most of it is phlegm. (I know, TMI!) When we were at Dr. Hellerstein's yesterday, she made him have an aerosol treatment in the office because his lungs were "tight." We left the hospital with Albuteral treatments as needed, but she changed him to Xopenex nebulizer treatments 3 to 4 times a day everyday. She said that yes, he may sound "clear," but he's tight and for this he needs treatment. She also said that the Xopenex will make him less irritable...wonder if that's why he was sooooo incredibly fussy the entire time we were in the hospital? (Albuteral makes your heart rate go up, Xopenex does not.)
In short, Jaime is home and we've got our little make-ship NICU here...humidified O2 concentrator, IV pole with Feeding pump, Pulse Ox monitor, nebulizer and baby scale to keep an eye on that weight. Not to mention an entire spare room (AKA, Titi's room) filled from one end to the other with all sorts of medical supplies for BOTH boys! Dr. Hellerstein asked me if I ever thought in a million years that I'd be doing this much care for my boys...NOPE! It's TOTALLY worth it, though! And NO, I DO NOT want to be a nurse...I admire nurses, they are AWESOME, (especially all of them who have taken care of Jaime, both in Cincy and Cleveland) but I would never want to be one! When you have children, you just adapt to their needs, that's all I'm doing...it's just what any parent would do! :-)

In other news...some of you knew that we were supposed to go to Cincy Thursday for a Friday appointment with Dr. Tiao, Jaime's surgeon. Obviously that did not happen because Dr. Sokolow and Dr. Craven, Jaime's pulmonologists wouldn't clear him (not that Tom and I were up for taking a sick baby on a road trip anyway.) Well, yesterday I talked to Betty, Dr. Tiao's secretary...we officially have an OR date (barring any unforeseen issues), it's Tuesday, December 29th at 7:45 A.M. Dr. Tiao has decided that Jaime DOES NOT need to come down for a separate appointment with him. WOOHOOOOOOOO!!!!! It has been SOOOOO hard to schedule ANY appointment with him. He said that we all know what's to be done, so he'll just see us probably the day before. We are all thinking that hematology will admit Jaime the night before to pump him up with Factor pre-op and we'll get pre-op labs and things when we go down in October, so we should be all set. I love that Dr. Tiao! :-)

As for this weekend, well, it's going to be a busy one! My parents and sister are here for the benefit for us on Sunday...they came in yesterday. My parents took Jared out to dinner and to a car show...he loved it! Before they left both boys were showing off their Halloween costumes. Jared chose "Dark" Vadar (as Jared calls it) and Grammy got Jaime a giraffe costume (too, cute).



Titi had pasta and braciole dinner with us (courtesy of Dale...THANKS, it was delicious), and spent the evening chillin' with Jaime.



Today, Jared has his ice skating lessons, then we're off to the pumpkin patch with Grammy, Poppy, Connor and Sophia if the weather stays nice-it's awful cloudy and rainy looking right now. :-( Tom passed the patch Thursday and said he saw some GREAT pumpkins out there. Then, tomorrow is our benefit put on by Tom's band....and my sister. By the way, if you are coming, you can still purchase your advance tickets today at www.trostfamilybenefit.com. Can't wait to see everyone there tomorrow! (Thanks to Dale and Majken for offering to keep an on Jaime for us during the benefit-it doesn't get any better than having 2 RN's watching him! :-)

Hope everyone has a GREAT weekend!