Ebs and Flows

***NOTE:  OK, it's been a few days and a very eventful week, so you're gonna have to deal with several posts in one day.  Sorry!!***


It took me a while to get around to writing this blog.  I'm not quite sure why. I guess maybe because we had seen such dramatically wonderful progress, and then in a matter of hours, Jacob digressed almost as quickly.  Intellectually I know that this is not a big issue.  It's bound to happen, I should just go with the flow, and appreciate the small miracles in my life thus far.  Emotionally, however, it was a bit devastating for both KC and I. 

When I left the hospital on Wednesday night, Jacob was perfect. He was alert, happy, calm, and relatively pain free.  It was more than I could have hoped for.  When KC showed up at the hospital on Thursday morning, he was the exact opposite.  When  you looked at him you could immediately see that something was wrong.  His eyes were terribly crossed, he wasn't responding to sounds, or his voice, his arms were stiff, and he was doing some funny 'tongue' thing.  If you didn't know any better, he would have looked more like a traumatic brain injury victim than a child with Down's syndrome.  KC spent the day listing to Jacob crying in pain and discomfort, and trying to convince the nurse of the day that: "No, this is NOT normal for our child.  Even IF he has Down's Syndrome"   We hear that a lot from the nurses.  "Well, that is completely normal for a child with Down's Syndrome...." and then they just dismiss whatever concerns we might have. Yesterday was no different.  He fought and fought all day long to get someone to listen to him but to no avail.  Then, Jacob lost his IV, which meant that KC had to listen to Jacob cry for about 45 minutes as they tried unsuccessfully to put a new one in.  Finally, when he was about ready to go in and pummel one of the nurses (luckily one of the AWESOME nurses from previous visits was able to talk him down and have him go for a walk where he didn't have to hear the crying) they got the IV in.  However, it didn't fix the crying, or the newly re-acquired reflux that Jacob was experiencing.

Needless to say, when I showed up for my shift in the evening, poor KC was absolutely frazzled.  There's nothing harder that seeing your child in pain and misery and being able to do nothing about it.

I walked in the room and immediately saw Jacobs issues without KC even vocalizing his concerns.  Luckily, we had Maggie (another amazing nurse from previous visits) who was filling in for the day nurse while she was on her break.  I began asking questions, describing everything that had changed since last night, and she immediately keyed into the fact that just before I had left for the evening, they had begun giving Jacob a new medication, Raglan.  Maggie explained that she had seen other patients on Raglan exhibit the same symptoms from the drug.  She made a few phone calls, talked to a couple of doctors and got Jacob off both the Raglan AND his Lasiks!  Within a matter of hours, Jacobs eyes were no longer crossed, he was reacting to my voice, his arms were no longer stiff, and he was looking at me in the face. He still wasn't feeding (they had to put an NG tube - goes to the stomach instead of the intestine - to give him his nutrients) but that was to be expected.  We were already expecting him to go home with an ND or NG tube. He was still a little fussy, but it appeared to be more out of tiredness than pain. 

A few hours into my visit I was able to put him on my chest and let him sleep on his belly.  Soon after he woke up though, the evening nurse came in, showed me his heartbeat on paper before and after his nap and showed me a HUGE difference in the heartbeats. No more belly sleeping!!  It was causing way too much distress.

Regardless, he was doing better, and that's what mattered.  Crisis averted.  By the end of my 'shift' he was again sleeping soundly, and acting perfectly normally. The nurse was going to keep an eye on his heart beat, but otherwise I was told he was well on his way to a quick and complete recovery.