Wednesday, May 9, 2012

Chaos Reigns. . .

My brain is tired lately.  Every Monday at 3:00am I wake up Tray and we get in a car and drive to NYC for his clinic appointments.  We stay there for 4 hours and then get back in the car and drive back home, getting back around 4:00pm.  A 13 hour day and still need to make dinner and do homework and get kids to bed.

Yesterday, Peter took Sergio and Joshua to the hospital to get them started on their IVIG infusions.  He arrived at 8:15 am.  Joshua was up and running by 9:30 but Sergio's had yet to arrive and his infusion is 4 - 6 hours long.  I stayed home briefly to take Trayvon his meds at school.  He was cleared to start again.  Due to the number of medications and the frequency of changes, it is easier to take him his meds each day than to try and have the nurse do it.  So after giving him the meds, Marriela and I set off for her psychiatry appointment.

The psychiatrist is always very calm and relaxed with Marriela, but clearly doesn't know what or how to deal with her either.  Marriela is a unique and wonderful child who does not make things easy for anyone including herself.  Within 10 minutes of arriving for what is suppose to be a 60 minute visit, she is stating loudly and clearly, "I'm ready to go. Why does she talk so much? (referencing her doctor) You need new toys, these are old. (referencing the toy selection - and not entirely inaccurate either), Why do you make me come here, it's boring. (again, not entirely inaccurate).  Let's go Mom, why do you keep talking?  I have to go to the bathroom (though she went only 1 minute before entering the office)."  At the 40 minute mark, scripts were done and we had an appointment made for next month, withOUT Marriela.  Marriela one, Doctor, none.  LOL  

We then walk together in the rain over to the main building to switch with Peter so I can stay with the boys.  She is no happier at this clinic than the other.  Peter takes Marriela back to school where she had a great day.  I begin a rousing game of Uno with Joshua and a volunteer.  Sergio's IVIG finally arrives at 10:30.  11:30, Sergio grabs his head and screams out and then begins shaking hard as his temperature begins to climb rapidly.  He is having a bad reaction to the IVIG.  While holding Sergio and praying that his tylenol begins to help his head and the doctors are called, Joshua says "My chest hurts."  More nurses, more meds and we stop both IVIG infusions as we administer medications to counter the reactions.  They are getting different brands, so it isn't a brand related issue, it's a Curkendall related issue.  It's just a day in my life.  An hour later, Sergio is burning up, but sleeping.  Joshua is restarted and with some extra Tylenol and benadryl on board, resting comfortably in the recliner.  Both have their infusions slowed way down and what was suppose to be a 5 hour day is now extended to a 9 hour day.

But at the end of the day, we're all back under one roof.  I awake today, dress quickly, help Marriela dress and prepare some meds in preparation to leave the house by 7:00 am for a PET scan.  This was the first time I was not allowed to stay with my child for a procedure or test.  Joshua was unfazed by it, I was riddled with anxiety.  He did great and came through the door sporting two new water bottles and asking to stop for something to eat.

Tomorrow is the only day I don't have to go to a doctor's appointment.  Friday, Sergio sees the TPN team to discuss his labs and, I'm hoping, to reduce his time on the TPN to only 16 hours (he is currently on 18 hours a day).

Chaos is just a natural part of our lives.  If it were to suddenly stop, I can honestly say, I would fall apart I think.  The unknown is what makes each day interesting. . . but more importantly, never lets me take things for granted.