T+2:Pushing the Needle



A benadryl enhanced nap.
 Hiya,

Ethan is taking a benadryl enhanced nap while he receives a unit of red blood cells.  I'm going to try to squeeze in an update while he's sleeping.

Ethan's doing very well for T+2.  What that really means is he's in very good shape for what's in store the next couple of weeks.

Most notably, he's still eating moderately well, and his energy and mood are still decent.

His blood pressure has been hovering in the one-teens to low one-twenties over 70 or so and his resting heart rate has been in the 140s to low 150s.  So they've upped the dose of his stage one BP medication.  He's been running a temp in the 99s for the last couple of days.

O Neg blood.  Thanks blood donors!!
Overnight, he's been having some problems sleeping.  The night before last he woke up during midnight vitals and didn't get back to sleep until 4a.  Then the silly bear figured he didn't need a nap yesterday.  At bedtime the goofball passed out less than 30 seconds after he settled down.

Unfortunately, he had some discomfort that looked like mild gut cramps early in the evening.  That's not too surprising and will probably get a lot worse before it gets better.  Fortunately, with a dose of benadryl at 1230, he was able to get to sleep about 1a and had a good rest of the night.

All of that is completely normal.

Specifically, looking at his blood work.  His hemoglobin is down, which is completely normal since we've destroyed his blood making factory, hence the red cells today. His platelets are still really good, but we're not really sure why.  It wouldn't be surprising for him to need platelets by this point or in the next couple of days.  But his platelets spiked back into the high normal range on Tuesday or Wednesday, and while they're declining, he doesn't need more yet.

The white board that Sarah started to help
us keep track of meds, questions and
the plan for the day.  (Her's is the
legible handwriting.)
His liver function numbers (AST & ALT) hit the 120s a couple of days ago (normal is 40s-60).  This is a normal reaction to the toxicity of the chemo regime.  When the numbers hit the 200s, the docs start adjusting his medications to reduce the toxicity load, and they don't really start to worry until the numbers reach 400-500.  Ethan's numbers came down in to the sixties within a couple of days.

The medicos are thrilled that he's still eating anything.  They say a lot of kids would have stopped a week ago at about T-4.  I'd say his overall caloric intake is about 1/2 - 2/3 of normal.  The folks here are much more agressive about putting kids on IV TPN feeding.  It makes sense, because you want to make sure that the kids are getting enough nutrition to fight and heal.  But TPN has its own complications and running a 16 hour IV feeding outpatient is a drag, so everyday he doesn't need TPN is a little victory.

Diaper rash will be a big pain for him and a big worry for us over the next couple of weeks.  The toxicity in his urine and stool damage the skin and his body isn't making white cells to repair the damage.  Not only will it cause him a fair amount of pain, the skin may well crack which could lead to an infection that his body can't fight off.We're starting to see a little diaper rash appear on his groin We're going to see if we can get ahead of that.  Fortunately, his butt still looks great!

 The medical staff are doing their thing and they're doing a good job of it.  For Sarah and I, our job at this point is to try to focus on his rest, his eating, his skin and mouth care.  On most of these items, I think we're bringing in our understanding and in some cases our own supplies to push the needle a bit and help keep Ethan as strong as possible.

On food.  Like many Hurler's toddlers, Ethan still eats jar baby food.  (I'm sure there's a reason for it, but don't ask me to explain it.)  At various points he varies between 1/2  - 3/4 table food and the rest jar food, but he never finished with it completely.  Since he's been inpatient, he's hardly touched solid foods.  Sarah and I have moved him over, almost completely, to jar foods.  And since the chemo has screwed with his taste buds, we're buying and bringing the same brand of baby food he's used to, even focusing more on the savory selections--e.g. pureed chicken stuff--versus sweeter selections.  Sarah's been great and made a number of runs mid week to pick up more of his brand and bring it in.

Over the last day or so, his jar food intake has dropped off, so I tried him on Cliff Bars.Ethan has eaten them at home and likes them.  Cliff bars are nice because their soft and chewy and pack in a ton of calories with somewhat better nutrition than a candy bar.  So far that's working okay, and we're supplementing that with other salty and savory things like Sun chips and pretzels.

We won't be able to keep him off of TPN forever.  But every day he keeps eating is one less day he's on it and hopefully a shorter time to ween him off it.

The pharmacy sent up a 1 oz tube of Desitin.  As Ethan's
grandfather once said, "That's like throwing a brick
in the Grand Canyon."
Desitin (the same stuff you get in the store).  The pharmacy sent us up a couple of 1 oz tubes of the stuff before starting to send us generic stuff that just isn't as good.

Sarah's taking over after work today for her Friday evening to Sunday morning shift.  She's taking her lunch hour to run out and pick up some more Cliff bars and a couple of big tubs of maximum strength Desitin.

Meanwhile, Ethan's getting red blood cells and enzyme today.  To reduce the risk of a histamine response, they give benadryl as a pre-med for both of those infusions. What the hospital staff don't stop to think about is the fact that if we give him two doses of benadryl during the day, he's going to sleep all day long and then will probably be awake all night. So we negotiated with the staff to move his enzyme infusion and start it closer to his normal bed time.  That way the benadryl will help him sleep more comfortably and hopefully he and mom will both get a good night's sleep.

Well that's it for now.  Here's a smattering of pictures from the last week or so.
Bath time

Sarah and Ethan had fun with a
playmat - bed tent.

All of Ethan's IV lines are different lengths, which make's
line management something more of a pain.  Fortunately,
Ethan is a little more aware of his lines and of the IV
pole than he was during his first transplant.

The current IV pole.  It lives, it grows.

Ethan propped himself up on the blankets to watch
something on the iPad.  Notice the extra plastic
"puke shield" on the iPad!




Comments

Erica J. Thiel said…
Keep up the awesome work Ethan - you are my hero of late! Hugs - healthy, germ free ones at that!

Grow Cells Grow!

Erica
www.rarelydefined.blogspot.com
Karla in MN said…
It is really good to hear that Ethan is doing so well! We think of him often and wonder what is happening to all of the others we knew while we were there with Sanjay. I am happy to hear that the " Hurlers " Doc is working his shift at this point in Ethan's Transplant...it is great when you are able to have a rapport with your child's Docs!
We hope that we are able to get together with you before Ethatn is cured and you head back home. Maybe sometime we can meet at the Mall Of America or something. Grow cells Grow!

God bless,
Karla and the Gang
Cheryl Garris (Mom to Andrew MPS II) said…
It is such a blessing to hear he is doing so well. Amazing what prayers can do! GOD IS GOOD!

Cheryl
Gordon said…
Go you blood cells go.God bless all of you. We know this is going to be a great success.
Eric said…
Come on little white cells!!! You can do it!!!
Lynda said…
Love the tent pic. That IV pole looks like it could become self-aware though. Thanks for the update Todd. Thoughts and prayers.
Brooke said…
Happy to hear that Ethan is doing well!! ((Hugs))