One week down and changes galore

We’ve all been home together for a week!  And what a week it has been!

We’ve been doing 4 respiratory treatments per twin per day.  That includes 20 minutes on the vibrating vest, followed by cough assist, and suction.  It has been going well, but it is time consuming.  It takes roughly an hour each time, comprising nearly 4 hours each day.  As of tomorrow, we’re transitioning back to 2 times per day, because they are doing so well.   Twice per day will remain part of our “healthy” daily routine.  I think they will welcome the reduction!

Landon’s PICC line is out!  That wasn’t too hard to handle as a caretaker.  We’re still glad it is gone though, because cuddling is much easier without it!

Other big changes:

Both boys are now on 3.25:1 ratio of ketogenic diet.  That’s slightly “stronger” than the 3:1 ratio we started with.  They have handled it well.  One of the reasons for this increase is it was time to wean them off of Sabril.  We would have loved to have weaned off of it sooner, but we’ve had trouble finding something else that helps control their infantile spasms.  Fortunately, the ketogenic diet is doing its job, and we’re thrilled to be able to reduce meds.

New med plan:

Ketogenic diet at 3.25:1

Onfi

Keppra (Landon only)

I can tell a difference in the boys as they are coming off of Sabril.  Landon has gone from completely silent and agreeable, mostly sleepy, to much more alert, and responsive.  This week we’ve seen him cry when his tummy was hurting, cry to be picked up, smile and coo a lot and loudly, and LOOK at a light up toy that projects on to his ceiling.

Other big changes – we’re running out of room again!  We’re going to work on the boys beds, and make some changes and storage options.  We still have some very important positioning equipment coming, and it is once again time to reorganize.

We’re incredibly thankful to be home, and amazed to think that only two weeks ago, Landon was coming off of a vent and chest tube, still had one looming blood transfusion and I caught a doctor whisper around a corner to a nurse “I’m very worried about Landon”.   

I think if Landon could talk he’d tell us all not to worry.  No matter what happens, he’s in God’s hands.  
   
    

Roommates!

I know I haven’t provided a lot of detailed updates lately, and that is partly because it was hard to describe what was happening with any accuracy since there was a lot of one step forward, one step back action going on.

Overall, these good things have happened:

  • Landon has gotten rid of his chest tube! (After draining 1 liter of fluids!!!)
  • Landon came off of the ventilator!
  • Landon has weaned from 8 liters of oxygen to 4, to 2…all the way down to 1/2 liter!
  • Landon has perked up off after lowering/removing some meds, and is “himself” in terms of alertness, using his soft sweet voice, squeezing fingers, and nuzzling when your face is close.
  • Nolan held steady on 1/2 liter, and as of right now…is on room air and holding.

We have these hurdles remaining:

  • Nolan needs to remain strong overnight and show that he can remain on room air, even in a deep sleep.  If he does this “you know what” might happen tomorrow.  But don’t say it out loud.
  • Nolan has also seen an increase in seizure activity.  We hope it is because his system is down…but that will require further monitoring at home and discussion with neuro.
  • Landon is still having some problems.  His pleural effusion is still present, but hopefully stable, and eventually reabsorbed by his body.  That is being monitored very closely.
  • Landon’s blood is very strange.  His hemoglobin dipped again, resulting in his second blood transfusion.  His albutum protein has dipped.  Hemotology is now also involved, and seems to think this is still all stemming from the initial illness/aspiration/event.  but since he has been sick for so long (3 weeks now) his blood is displaying behavior similar to a chronic illness.  But it can be overcome with time.

Back to the good news:

  • They are roommates!
  • They are happy!
  • Landon, despite still being very sick and mysterious, looks like himself, and loves like my Landon.

Family Reunion

Family Reunion


Big Brother checking in on his buddy

Big Brother checking in on his buddy


"Nolan...are you smiling?"

“Nolan…are you smiling?”


"Yes!"

“Yes!”


Mama's first good Landon cuddle in a while.

Mama’s first good Landon cuddle in a while.


Telling me not to worry about him.

Telling me not to worry about him.


<3 This boy…


Nolan either trying to escape, or telling me he's not leaving without Landon.

Nolan either trying to escape, or telling me he’s not leaving without Landon.


Roommates!

Roommates!

A light

I can see a light at the end of the tunnel.  I have to squint, but it is there.

Landon has had a great 48 hours.  Most importantly, they removed the breathing tube!  12 hours in, he is holding his own beautifully!  I am so proud of him.  I am so amazed by their toughness in these situations.  Landon is on a lot of oxygen via nasal cannula.  So for now a key goal is weaning him down.

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Overall the DR is thrilled with his fight and progress!

 

 

 

 

 

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Nolan continues to soak up the attention with lots of smiles.  He hasn’t weaned off of Oxygen yet.  To be determined if he is just a little sick and needing more time…or if healthy Nolan just needs a little oxygen now, particularly when he is sleeping.

Either way we have been blessed with good medical care, precious boys, and more time.