1st CCF Admit.

M3307 has been mine and Jaime's home at the Cleveland Clinic Children's Hospital for the past two days...and possibly 2 more?!?
Everyone wants to know what happened...well, on Tuesday, Jaime had one very prolonged apnea spell...to the point in which I almost called 911 because he was unresponsive. He came to just as I was getting up to get the phone. So let's fast forward a bit...Jared came home from school with an aching ear so I called the dr. to make him an appointment for Wednesday morning. Fast forward a bit more...another apnea spell for Jaime. Then, at 4:30 A.M. Jaime started to sneeze, he was very congested, coughing and gaggin. So, yesterday morning I called the pediatrician and asked if he could see both of the boys...SURE! So, we went at 10:00 A.M. Jared has fluid in his ear...and possibly a sinus infection, Jaime probably has the same thing (minus the ear), but it has been exacerbated by his chronic medial issues.
Basically Jaime got admitted because of his prolonged apnea spells, however since we're here...we're seeing lots of drs. So far, we've consulted with pulmonary, ENT, hematology, general peds, neurology and sleep disorder drs. Tomorrow we're due to meet with GI as well. Don't know if cardiology will be involved or not because Jaime just had an echo in April, however on x-ray this trip his heart looks a bit large.
OK...to put everyone up to date on what's taken place over the last two days for all of you number and result people out there:
Chest x-ray: elevated diaphragm, hazy upper rt lobe (these two are Jaime's norm) and an enlarged heart.
Upper GI: Normal
Respiratory Panel: Negative for virus
Urine-Normal
Factor VIII: 10% (normal for a hemophiliac)
APTT: 46 (elevated, this is a bleeding time)
Factor IX: I can't remember the number it was either in the 40's or 50's this was LOW, this is known as Hemophilia "B" or the Christmas disease. Not sure if this will be followed up, as it was an unexpected lab value.
All other general labs were normal...except one indicating an allergy of some sort.
Jaime was to have an EEG, but turned blue during the application of the leads due to crying and not handling the sensations...it was a very strong sensory input procedure. Jaime did not tolerate this at all.
On deck for tomorrow is an MRI, an ENT scope and an EEG. Jaime will be sedated for the MRI, while sedated, they will place the leads on Jaime's head for the EEG. GI will be coming as well. There was some talk about an impedance probe it's a tube placed in Jaime's nose to his stomach-like the NG-to test reflux. There was talk of obtaining another sleep study and getting a CT of his lungs. Both will be done when Jaime's feeling better from his sinus thing going on.
After everyone stopped poking Jaime, he was doing awesome, the drs. even took Jaime off of his O2 to see how he'd do. As it got later...Jaime started coughing more...he coughed, gagged and threw up 2 complete "bottles." He's fast asleep now...and all of our clothes and his blankets are in the dryer.
So that brings everyone up to date on Jaime...I won't get into as to why they want all of the studies tomorrow...I'll "blog" about that once we have results.

OK, before I end this, let me just tell you how different the overall atmosphere is here at the Clinic versus Rainbows. Everyone has treated me (and Jaime) with the utmost respect...they've all spent lots of time with me listening to Jaime's unique and long history. They are trying to be proactive in doing some things on him. The room is private and nice, I've had 3 HOT meals...they call them "guest trays" here. The nurses have been WONDERFUL! Jaime's had the same 2 the entire time he's been here. Even the transporters, child life specialists and aides have all been very kind. They've all gone out of their way in one way or another for us. One girl stopped by the giant fish tank (I'll have to take a pic of that tomorrow) so that Jaime could watch the fish...this was when he was being very fussy and no too happy about taking a trip to x-ray. The aid last night made my bed up (the couch converter bed) for me. I could go on and on...and to top it off, they have a Ronald McDonald House sponsored Family Center on our floor where we can shower, do laundry, eat...watch tv, go on the computer and so forth. Last night a group sponsored a pork and potato dinner. I, unfortunately missed it because we were in x-ray, but I heard it was really nice and they left us some yummy pastries! So overall a very positive experience here at the Cleveland Clinic so far. It's nice to be heard and listened to...with the extra added bonus of being respected! :)
Here are some pics I took of Jaime over the last two days.

Jaime in his jumperoo watching Clifford.

Bath time...you can see in his eyes that he's sick.

They have a toddle tub shaped sink to bathe the babies in.

After his bath feeling good playing Lego Mega Blocks...Jared would be jealous.

Fast asleep after his vomiting episodes.

Oh and as for Jared, he's still junky sounding, but OK. He misses me, Tom's had concerts the last two nights, so Dale's been watching Jared...thanks, Dale!


I'll try to write more tomorrow...