Home (!!) update :-)

We're home - exhausted and a bit overwhelmed, but home.


Noah is still having some significant discomfort from his surgery.  Most of it seems to be plain post-surgical pain, but the amount of blood in his urine seems to indicate some mild bladder spasms as well.  We've restarted his oxytrol patches to help with the spasms and we're adding IV morphine to his already robust pain line-up of oxycodone, methadone, and IV ibuprofen.  We're confident that the morphine will only be a short-term addition until he finishes healing from the bladder surgery and the broviac debridement.  It's not a great drug for him - it helps his pain, but makes him very agitated so he needs IV benadryl with it . . .which then conks him out.  Not the best choice from a quality of life standpoint, but it's not as much of a problem right now since we're going to be premedicating him with benadryl before his IV antibiotics anyway.

It looks like we won't be able to leave his supra-pubic catheter capped with scheduled emptying as we'd hoped.  His bladder empties at totally random intervals, but does not empty completely.  We tried uncapping his catheter to empty his bladder every 2 hours, but most of the time he'd already soaked himself (and still had an average of 200 cc's of urine left in his bladder), so we gave him the choice of leaving the bag off but wearing a diaper, or leaving the bag on and wearing underwear - as you can imagine, it was no contest and he chose the bag+underwear.  :-)  He'll need a feminine pad in his undies as he's leaking tiny drips of blood and urine through the day - just enough to be a bother to him.  The oxytrol patches may stop the drips and help control the bleeding, but if not he isn't at all concerned about a little liner in his big boy undies.

We really need prayer that we'll be clear-headed and organized as we get ready for this trip.  OCD list-making me wasn't planning on spending a week in the hospital and I've got to really be on the ball to get everyone packed and ready tomorrow while also getting used to Noah's new regimine. 

He's currently on IV dextrose (sugar water), IV TPN, 18-20 doses of IV drugs per day, and 8-10 doses of buccal oxycodone.  He has a urine drain bag that needs to be emptied every couple of hours and the volume charted, plus there's the farrell bag (stomach drain bag) to tend to and change throughout the day.  His broviac will need intensive daily dressing changes (takes about 3x longer than our usual ones that we usually only do weekly) and the surgical dressing from his bladder surgery will also need daily dressing changes.  Obviously, just packing for him will be exponentially more complicated that everyone else combined . . . but here's the thing . . .


With the Lord's help, we're doing it.  We're not going to let this diminish his fun next week - not one bit. We've had other increases in his care that seemed overwhelming, but we got used to them and we muddled through somehow.  Jeff and I are busily planning and organizing the best ways to do everything next week around his medicine schedule so that it doesn't prevent one bit of fun.  The only really big deal will be the mid-afternoon IV benadryl with his antibiotic.  Since that puts him right to sleep, we'll need to adjust things around that dose, but we're fully capable of doing everything else on the fly.  I prepare an entire 24 hour supply of drug doses each night and have timed alerts for every single drug dose right on my phone, so we should be able to roll with it all pretty well.  He gets 7 doses of medicine one right after another starting at 7 AM and again starting at about 10 PM.  Some of them have to be done before or after others, so tonight I printed up a big chart listing the order for the lists of those meds. The other meds are more spaced out through the day and not as logistically challenging.  I think it will all be second nature very quickly, and overall I'm very thankful that we're going on aggressive antibiotics and extra pain meds - it's more work, but it will all go a long way to making sure Noah is as optimized as possible for this trip!!

I'll obviously take about a bazillion pictures.  Ideally I'd like to upload some pictures with a short update each night but we'll have to see how it goes.  If I don't update while we're gone, it's because we're just having too much fun and I'll update when we get home.  Of course I'll update if there is a problem.  We'll continue having hospice nursing visits while we're there, and will be receiving at least one large couriered delivery of drugs and IV fluids while we are there (some shelf lives are too short for us to take everything we need all in one go).

You can't imagine how excited I am about this trip, and how thankful we ALL are.  We've been incredibly blessed by some gifts from some of you that will allow us do say "yes" to things we never would have been able to do.  We'll never forget that kindness and never stop being thankful for it!  This promises to the be the trip of a lifetime and I'm very much overcome with gratitude and appreciation for everyone who has in some way worked to make so many dreams come true for Noah.  He even got a package today with alligator sunglasses, an alligator visor, and an alligator beach towel - it cracked Hannah and I up completely to think of him on the beach styling in alligator splendor LOL.  THANK YOU to whoever did this!!

 Noah's doctors and nurses at the hospital, Dr. B here in town, his hospice team, and his infusion company have done an AMAZING job all pulling together to work out what seemed at times like impossible logistics to make this happen.  We'll do our part with gratitude and between us all this promises to be a week filled with joy and precious memories.

Blessings,
Kate