Monday, April 20, 2015

Infusion Time

Time to park it for a day at Children's National.  Bone infusion day.

Brayden was NOT having it.  He started his screaming fit before anything even started.  He was SCREAMING (he typically does this at night for a couple of hours, several times a week), he gets to the point of no return and nothing can calm him down.  I held him, rocked him, laid in the bed with him...he was not settling.

The morning of the infusion starts at 8:00 a.m. to check-in.  We wait for a bed to be delivered to the clinic (recliner chairs are provided but Brayden cannot sit in those).  Then we wait for the pharmacy to make the pamidronate.  We wait for the IV team to come.  We wait for the 4 hours for the infusion to be administrated via IV.  It is an all day process.
An anesthesiologist came to put in Brayden's IV (thankfully the nurses in the clinic know he is a hard stick so they don't even try).  We have never seen this anesthesiologists...which always makes me nervous.  I tried to convey to him the best places to find Brayden's veins, he didn't listen to me much but he quickly realized I was right.  He looked and looked, tried twice and found no good vein.  Thankfully he stopped and requested the special IV team (that basically goes around the hospital just to do those hard-to-find-a-good-vein patients).  This team we know and have done Brayden several times...and they got it in one try.

Brayden seemed to have settled down at this point, looking like he was going to sleep.  The infusion started.  Brayden started the screaming again and he did not stop.

I forgot to mention that we are in a tiny room, that we share with another patient and their family.  Brayden's screaming was upsetting the little girl there for her infusion.  She was crying, "Please don't give me the shot, I will try to be brave."  I could not get Brayden to settle. 

Many of you may think Brayden is upset about the infusion, the IV, etc.  While that might be a reasonable explanation, we are thinking it is not.  He often has this screaming episodes, like he is in no control of he is out of his mind...the harder we try to calm him the more upset he gets.  And he can go for hours.  Today was one of those days when he went for hours.  It is the MOST exhausting thing for him and me.  I had to leave the room for a moment (to cry a bit in the cafeteria and call Jeremy) while Brayden's homecare nurse stayed with him, who thankfully came with us for the infusion.

Brayden finally settled for a little bit, started screaming again, then settled down was a roller coaster.
Towards the end of the infusion the nurse arrived with a gift for the kids, Brayden got a little Simba stuffed animal.

The infusion ended.  In weeks prior we talked with Brayden's neurologist and the bone clinic team.  Brayden's reaction to the bone infusions, the few days after the infusion, have been really rough.  High fevers (104) and uncontrollable seizures.  The doctors agreed to give Brayden a good dose of Ativan via his IV before we went home.

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