What was a routine follow-up with the geneticist turned into a hospital stay.
Stacey took Aiden to see the geneticist for his first follow-up since coming home at Christmas. Very pleased with Aiden's progress and appearance. Said he looked much better than she expected him to and developmentally (size, shape, motor function, etc)he is doing well.
Said she researched multiple medical databases for anything she could find on his chromosome 6 duplication...and found absolutely nothing. No evidence or record of this occurrence anywhere on available archives. He is unique!
Said there's other things associated with the hydrops he experienced at birth but she doesn't see any obvious signs of those things at present time. Wants to see him again in 5 months.
She also made some calls and got a new ABR hearing test scheduled with priority on Thursday (tomorrow)at Arnold Palmer Hospital.
Aiden's been coughing since the weekend and she detected some fluid in his chest. Said if pediatrician couldn't get him in to take him to Arnold Palmer right away - don't wait.
Stacey got to APH ER before 3pm yesterday, went into private ER room about 5pm, then found out he has pneumonia. Stacey went home around 10 pm to get some rest. She had to work today.
I stayed with Aiden in the ER room until 1:30 am when a regular room came available.
We were situated by 2am and asleep soon after. Then 4:30 am came along...and so did more docs and techs. Now they set up the monitors etc. and blip...blip...bleep...blip...bleep...no more sleep.
Aiden's had blood drawn 3 times since being here. Had 1 breathing treatment so far today. Had 1 round of antibiotics thru his IV. Round 2 should be by 10 pm tonight. More breathing treatments are expected (maybe every 4 hrs).
Docs are talking about keeping him another night and posibly sending him home Thursday. When he goes home, it's expected he'll be prescribed antibiotics and breathing treatments to span a 10 day treatment period.
Docs are trying to coordinate the priority ABR test before he's discharged. Not sure if it'll work out or not. We're trying to prevent more delays in obtaining an accurate hearing test. We need this to get him on Medicaid - more benefits and programs are available to meet his needs. Geneticist is on board and will do what she can to help expedite anything needed for Aiden to receive the care he needs sooner than later. Says it's critical to get his support system and resources established as quickly as possible.
Thanks to Scotty, Nicole, and Pastor for dropping by yesterday.
Special thanks to Paula for trying to donate a personal day so Stacey could take today off. School admin wouldn't let her do it but we appreciate the effort.
As always, staff here is fantastic. Day nurse is terrific.
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