whirlwind

Oh, what a day.

Last night when I put Noah into his jammies, I noticed that there was significant drainage around his new central line.  I called the hospice nurse and we decided that I would clean it well, do a dressing change, and we would get it looked at in the AM.  Since Noah was scheduled for a transfusion this morning in Greenville right next to the surgeon's offices, the plan was for us to head to heme/onc at 7:30 this morning and the nurse would call the surgeon.  We figured that we could either go over to the surgical office while waiting for Noah's blood to come up from the blood bank, or the surgeon could come over and look at Noah in the heme/onc clinic.

Sounded good on paper . . . but the surgical office was simply unwilling to look at the line.  It's not "their" line since it was placed in Winston-Salem.  (Don't get me started  . . .)

While we were still waiting to hear that lovely bit of news, we got a call from the surgeon in W-S who said that she'd seen the photos we'd emailed and that the line needed to be replaced.  She was leaning toward doing it whenever it was convenient for us, but when we told her about the drainage, she decided it needed to be changed ASAP- which, since we're so far away, means Friday AM.


I was popping in and out of Noah's clinic room fielding calls from hospice, the W-S surgeon, and trying to get Angel Flight set up while Jeff was talking to the heme/onc doctors.  They finally got his labs drawn and his hemoglobin was just, just, just barely above the transfusion threshold.  For whatever reason, it didn't drop at its usual rate since we were at heme/onc last Monday.  He will almost certainly need a transfusion either at Brenner's (the children's hospital in Winston Salem) or when he gets back, so we're schedule to go back to heme/onc AGAIN next Monday.  (And I know it would make sense to check his labs here rather than driving 100+ miles round trip to be told he won't be transfused, but they want lab values from their own lab only.)

In the midst of all of this it became clear that the Greenville surgeons weren't going to even look at the oozy bleeding line.  The surgeon from W-S was less than pleased that we couldn't get follow up close to home and everyone felt that the line needed to be looked at, so we arranged to head home and have Dr. B look at the line.

We grabbed some lunch, made a quick stop, and got back to Greenville exactly in time to roll into Dr. B's office @ 3:30.  It was a madhouse and there was quite a wait before we could be seen.  Dr. B ordered blood cultures and IV antibiotics.  We know the cultures will be negative as Noah definitely isn't sick, but we need the negative culture - if we get to Brenner's and Noah is on IV antibiotics for his line, they'll need to treat the line as infected and it would prolong his hospital stay.

We'd hoped to go to W-S first thing Friday morning, but the timing won't work out with his surgical time, so we'll fly there sometime Thursday and be admitted then.

Further complicating the day was a series of phone calls from Noah's infusion pharmacy.  There is a nationwide shortage of IV fentanyl and with Noah's newest rate increase (also ordered by Dr. B this afternoon) Noah only has access to enough fentanyl to get to W-S on Thursday.  Nothing like cutting it close, right?!  We'll need to switch to diloudid in his pain pump, so Dr. B is going to call the Brenner's peds pain team and see if they can make the switch while he is there.  That's one bright spot - it will be safer, easier, and faster to do that on a monitored floor inpatient than it would be at home.

We also needed to discuss a DNR with Dr. B.  As sickening as that was, it needed to be done.  Without one, if Noah's heart stopped while a hospice nurse was here, she would be legally required to attempt resuscitation and call 911.  We're not doing a total blanket DNR but spent time with Dr. B defining which measures (oxygen, for example) are OK and which (chest compressions, for example) are not OK.  It's important to have it all written out, but also important to note that we can verbally request any interventions and they will be done whether they are on the DNR or not.

We got home about 10 minutes before the hospice nurse got here to draw labs and increase the rate on his fentanyl pump.  All in all, it was a really, really long day.  The nurse will be back again first thing in the AM to hang his new bag of fentanyl and do her regular assessment.

Please pray for peace and rest of mind tomorrow - maybe not in the way that you would think.  For me, medical phone calls can be one of the most exhausting and brain-zapping things I deal with.  Days like today where I was fielding seemingly non-stop calls from multiple medical professionals and Angel Flight are just plain hard.  It's a juggling act where one call requests information that requires me to make another call - and wait for that person to call someone else to call me back so I can return the original call.  Yuck.  There will be quite a few calls tomorrow.  We need to get Angel Flight set up which involves Angel Flight, W-S, and Dr. B.  We'll be dealing with our infusion pharmacy to see how long this last bag of fentanyl will last (thereby determining what time we need to leave on Thurs.) and to get some needed supplies.  We need to meet with Dr. B to get the DNR signed so we can take it to W-S . . .  the list goes on.  Please pray that this can be accomplished in the most efficient way possible and that I just have a peaceful, non-harried brain tomorrow.

Jeff and I were speaking at dinner tonight about the goodness of the Lord.  Not too many years ago, a day even 1/4 as crazy as today would have had us stressed out, panicking, and miserable.  Honestly, by the grace of the Lord, we were able to take all of this in stride with no real upset.  There was the undeniable mental stress of juggling it all, but it wasn't manifested in stress-filled behaviors (wait - does it count that I asked Dr. B's nurse if I can be put in a medically induced coma so I can rest?)  :-)  Seriously, He's shown up in so many big and small ways that our ONLY response to all of this was that God had it covered and that while our brains and bodies felt like they were on hamster wheels, our souls could be at rest.

Speaking of rest, I sure could use some and continue to covet your prayers for that.  I get little sleep, and what I do get is almost always very poor.  I'm off to seek some sleep right now!

Blessings,
Kate