T+23 - T+28 "Murse"

Though it's not a title I envisioned ever having, Murse (mom/nurse) is a title I proudly bear.  The time between my previous post and now is indicative of how busy life is being out-patient.  Let me just run through a "typical" (our days are anything but) day.  Warning, the below is not for the weak of stomachs.

Wake up before Coleson, give him first med (anti-nausea).  This entails stopping his G-tube feeding and then restarting it.

Hope he doesn't get sick, draw other meds (started with 13, now down to 8).  

Wait 30 mins.  Start to give more meds - the order changes on the day.  Start/stop G-tube.

Hope he doesn't get sick.  He wakes up.  He gets sick.

Examine vomit to Determine what meds he has thrown up and cause for vomit.

Decide whether any of the meds need to be re-given (possibly call BMT fellow for guidance)

Give more meds.  Hope he doesn't vomit.

Change diaper - analyze contents to determine how "loose" it is.

Unhook TPN feeding.  Flush and Hep lock his line.

Give remaining meds.  

Wash bedding

Go to clinic for blood draws, analysis for med/feeding changes/transfusions (fortunately only enzyme thus far - no blood or platelets needed yet).  Only needing to go twice last week and twice this week so far.

Repeat morning med routine in afternoon.  Inclusive of analyzing "output". Make decisions.o

Get TPN out of fridge to warm up.

Change out G-tube feeds.  Determine what rate to administer it.  He is at 20mls/hr during day and 10 Mls/ hr at night.  Needs to average 20 Mls/hr continuously to stop TPN which I really want to stop.

Repeat morning med routine in the evening.  Analyze output.  Make decisions.

Mix up his TPN.  This needs to be done in sterile environment and includes injecting vitamins into his prepared electrolyte bag and mixing in his lipids.  

Hook him up to TPN.  Take temp prior and 1 hr after.

Sleep a couple hours.  Determine why Coleson is restless. Do a number of things to prevent vomiting: Stop his G-tube feeds, vent his g-tube, drink water, Wait.  re-start G-tube, perhaps Slow down G-tube rate.  Wait.  Repeat stopping/venting/waiting sequence.  

Coughing starts and then vomits.    Clean us up, go back to sleep for a couple hours, repeat previous sequence.  Sleep a little longer and then repeat the day.

Thankfully, Rachel is here to help me with giving meds, taking care of him during days/evenings so I can sprinkle in work time and of course Paul is too.  He helps at night when he vomits.  Coleson developed the coughing/congestion that I have from the RMH and that is primarily the source of vomiting.  The drainage just runs down his throat to his stomach. 

And fortunately, my sisters took Peyton back to Michigan with them after their visit here this weekend.  It was a last minute decision and I hated to see her leave again, but it was the best decision for everyone.  She will have more fun with her cousins and we all need to focus on Taking care of Coleson right now.  I just hate that we are in this position where it his is the case.

Otherwise Coleson's numbers are great at last check and he is his playful, happy self most of the time.  We also got the engraftment results and he is 100% donor cells for the newest produced cells and 90% for the longer living cells - which mean 10% are still his but those will hopefully die off soon enough and be replaced with donor cells.