Today was one of those long and tough days as a heart mom.
Let me take you back a week. The following morning of Frank's routine cardiology appointment Dr. Kane called me first thing stating that after some review and discussion with colleagues he thought it would be best to proceed with a CT scan due to pulmonary arteries not being well visualized within the echo and he was unable to confirm that they are growing properly has he grows.
Dr. Kane did state the process in itself could take 30 mins from start to finish and may not need anesthesia. I was hopefully, I know there are many dangers and side affects in anesthesia so thinking he's a lot bigger now he can do it. I got the call from radiology later that afternoon to get it scheduled for July 3rd arrive time at 9am. Since we had the possiblity of anesthesia and of course being a heart kiddo we had to travel to the Dallas Children's. Hoprefully soon with Plano growing we can handle things there like this.
All night was pretty rough, as many heart kiddos have difficulty sleeping though the night of course Frank does. We are at about one wake session a night around 4am, just to feed (about 6 ounces of milk, he drinks 6 for bedtime).
Not let me give you the run down on our last 24 hours.
Schedule
Sunday
Bath & Bed - 9a
Bottle - 11:45p
Monday
Nothing but clear liquids - 12a
Wake waiting bottle - 4a
Amoxicillin - 6a (and officially awake)
Nothing By Mouth - 7am
Leave for hospital - 7:30a
Arrive at hospital - 9a
Begin "prep" - 9:30a
IV team - 10:30a
Transferred to RAU - 11a
IV need replaced - 12p
Discharged - 1p
So prep includes; IV, wrapped on the CT bed with velcro, monitor leads on back & chest, pulse ox. Just want to remind you all this is all without him having anything in his belly since midnight. After the long morning I was able to rock our little guy to sleep and when the time arrived for the scan and anesthesia only the light has was needed. Discharge includes advising of things to look for with any issues, ease in food nothing heavy. He enjoyed a popsicle as they watched his states getting out of sedation.
As we await the results and next steps I can only pray that God can prepare us for what's next. Options could include of course continue with the current medical plan, move up next surgery (potential changing the plan in itself), or down the path of transplant. Being heart parents the world transplant gives you a lot of worry and fear, it could take months, years to receive a transplant and that's not even always guaranteed.
Signed a bubble bath resting momma
