Marathon Day at Children's

We had such an incredibly l-o-n-g day at Children's today. In fact we are still driving up to Columbus and are 30 minutes away.
Let's start on the way down...NIGHTMARE! Jaime cried most of the time because we weren't allowed to feed him due to his sedation for the ECHO. That was fun...NOT!
When he finally did fall asleep, we saw 2 huge trucks transporting wind turbine blades. They were really cool. I had to take 4 pictures just to get one blade. There was a big caravan with police escort and everything...what a cool site! Here's one of the photos I took.



Finally, we got to Cincy! We made it there at 1:15, our ECHO was scheduled for 1:30. OK, if there's something to be said for Jaime having ORSA (in his ET tube in MAY) it's us receiving prompt attention. Once realized we were an "isolation" case, we were whisked back to a room! HA! Next, we were asked lots of questions and Jaime was sedated for his Echo. This is Jaime getting sleepy! HA!



While "asleep" he had his echo.



Jaime or robot? You be the judge!


Actually, this was taken of Jaime during his EKG.

Finally, Jaime woke up and was aloud to have Pedialyte. Not only did he suck it down, he held the bottle, too! HA!



After the echo we met with Dr. Hirch and his clan. The results....Jaime's echo had IMPROVED since discharge. Woohoo! We were so pleased to hear this! Because it was so good, we are allowed to wean some of his meds! YEA!!! His Sildenafil (Viagra) (for pulmonary hypertension) is going down to 3X a day, his KCL (potassium) and Diuril (diuretic) are going to once a day for 1 week, then we're to discontinue them all together! Finally, his NaCl (sodium) is going down to twice a day. His Aldactone (another diuretic) will stay at twice a day...we don't mind because this is the medication he actually likes! So, all and all this was GREAT news for us!
Now, the not so great news...no one can figure out why Jaime is having these brady episodes. This morning he had one and went down to 63. We were hoping it was our crummy monitor, but when we hooked him up to the hospital monitor along with ours, they were reading exactly the same! BUMMER!
We discussed a cardiac catherization, but it's been decided that the risks for Jaime being a hemophiliac, far out weigh the benefits. So, that will NOT be done unless it's absolutely necessary. We will try to find less invasive means to find our answers...which brings me to our next topic. We can officially say that we've added another piece of equipment to what I call our "freak show." Jaime is now hooked up to a heart monitor. This will record his heart during brady episodes...or anything else for that matter. We have to call in the recording at the end of the day or after 3 episodes whichever comes first! This will be on him until the drs. feel they've gained enough info or up to 2 months...which ever comes first. They are issued on a monthly basis, but at most it will be 2 months. Hopefully this will shed some light onto the brady episodes.
We spent about 4 1/2 hours in cardiology...we missed our hematology appointment all together, but were able to speak with Susan...the nurse manager. After that, we went to the lab so that Jaime could have labs for Dr. Haberman (neonatologist) drawn. We spent a LONG time waiting for those...perhaps we should have mentioned the ORSA? HA!
Anyway, finally, just before 7:00 P.M. we headed up to the RCNIC for a quick "hello." We got to see all THREE of the Adlers...that Carter sure is handsome...and get this he's LONGER than Jaime. (Jaime has about a pound on him, but he's definitely longer.) We also got to see Gia, Sarah (Gia's mom) and Laurie (Gia's grandma). Giavanna is BEAUTIFUL! The funny thing about all of our babies is that they were all fast asleep, (AKA sedated in some way)! Poor babies all still have issues of their own! Here's hoping for better days ahead for ALL of us!

While it was great to see everyone...we had to head North at some point. Our next follow up will be in 2 months and God-willing, all of our appointments will be over 2 days in a row.

Laurie, here's a funny story just for you...before heading north, we stopped and ate. Jaime woke up just after our food hit the table...figures, right? I got a bottle ready for him and fed him. Since he was just fed, I had to put him in the car seat instead of the car bed. We are not even out of Cincy before Jaime started projectile vomiting all over himself, his car seat and the car...good thing it's a rental! HA! Only us, I swear! The "freak show" continues.

We are almost at Titi's now, so I will go....until tomorrow...



P.S. I couldn't WAIT until tomorrow to add this one...so, we get to Titi's house...she's not home. We knew this, so she gave us a key. Well, Tom went up to the door, opened the house and...weee, weee, weee, weee...the alarm went off. So, what do you think happened next? The neighbor's came out. Tom and I apologized...the little 70 year old neighbor came out and said she knew Stacy's code. By the time she got it, the alarm had stopped. So, Tom went in...AGAIN...turned the alarm off and we proceeded to bring the boys in. Both of them were sleeping. Anyway, just as I was getting Jared into his bed...knock knock! The Columbus Police were at the door. UGH! Tom explained things to him, then he asked if we were burglars...YEA RIGHT! Oh my what a night...what a day....it's time for this 24 hours to END!!!!