Category: Isaac Update

To sleep—perchance to dream. Ay, there’s the rub!

by ObtainingMercy, posted in Isaac Update, Prayer Request

I feel like I'm consumed with the subject of sleep lately.  Although, thankfully, I'm only concerned with a few hours of it each night, not obsessed with the eternal sleep, as was Hamlet!

Batman2

(Hmmm…aren't bats nocturnal?  We may have to scrap these pjs for a while!!!)

Isaac visited with his neurologist yesterday, then went to have his blood levels checked, too.  We won't have those levels in for a bit; but we do have some changes to put into place for him.

  • We are weaning him off his sleep medication, since it doesn't seem to be working anyway.
  • We are starting him on Melatonin.  His first does was last night.
  • We are increasing one of his seizure meds by one-third.  So his morning dose is doubled, starting today.

Isaac did sleep the night through last night.  We are SO grateful for that.  We don't know if it was the Melatonin that did the trick, or if his internal clock has somehow reset itself, because he has slept the night through for the past 4 nights in a row.  That is a record for the past 7 weeks!

Today, however, we have a quiet, subdued little man.  The double dose of meds will keep him that way for a while, until his body adjusts to that amount.  The neurologist did say that she hopes this will be a temporary adjustment, and we certainly hope that too.

My back is doing some better.  I was able to go to church on Sunday night, and only had minimal pain toward the end of the service.  It was so good to be able to sit in the service and enjoy the music and preaching.

I started a walking DVD today.  The instructor does a mile in about 18 minutes.  I was only able to go for about 11 minutes (before my right hip started complaining), and was not able to keep up with her pace for the last 5 minutes.  But I was up and moving and getting my heart beating and warming up my muscles…I'll take that as a successful workout for today. 

And, I'm pretty sure the exercise will benefit my sleep patterns, as well!

I'm praying for my friend, Laura, that she and Josh will get to sleep a little, too, while they're in "Club Med" (the hospital, for those of you who aren't current with Special-Needs-Kiddo-speak.)  Josh's blood labs are off a bit, and they are trying to find out exactly what is going on with him.  I know Laura would appreciate your prayers.

Blessings to you,

Alesha

How Great is Our God!!!

by ObtainingMercy, posted in Isaac Update, Thankful on Tuesday, What's Happening

 

 

No surgery needed for Isaac!!!

The shunt was actually drawing too much fluid from his brain, which causes the same symptoms as if it were not working well. They adjusted it with a magnet and sent them on their way!

THANK YOU for your prayers! God certainly showed up and answered them!!

 So very grateful,

Alesha

 

Praying for Isaac

by ObtainingMercy, posted in Isaac Update, What's Happening

 

  KeplernIke

Isaac has been having symptoms of shunt failure for about 3 weeks now.  We had to rule out ear infections, sinus infection, etc. to know what was going on.  I talked with the neurosurgeon PA yesterday, and she feels his shunt needs to be tapped to see what is going on.  (They have a tiny needle hooked to a tube that they literally "tap" into his shunt line, right through his skin on his head.)  If they get fluid there, they know the shunt is not working properly.

Doug is taking Ike to the children's hospital ER at 2 p.m today.  They will tap the shunt.  If it is not working, they will do emergency brain surgery.  If you recall the 03/10 surgery was to replace the tubing of the shunt.  This will be to replace the shunt itself – a much more serious surgery. 

Due to his previous surgeries, there could be complications.  His first shunt could not be removed due to the skull's calcifying around it.  It had been in place for 5 years.  They laid the 2nd shunt right beside that one.  That was 5 years ago.  If the same thing has happened to the 2nd shunt, I believe they would have to remove one or both of them to put in a new one.  That means lots of blood loss and much more extensive surgery.

Of course, I cannot go.  (I cannot sit up long enough yet for the ride there, much less all the walking, etc. that would be required.)  That is almost more than I can bear.

Thanks for praying.

Alesha

Thankful on Tuesday

by ObtainingMercy, posted in How Great is Our God, Isaac Update, Thankful on Tuesday, What's Happening

 

I am thankful…

  • That Isaac has not had fever since Sunday.  (That is after Friday's trip to the ER, his diagnoses of pneumonia, I.V. antibiotics and lots of acetominaphen and ibuprofen.)
  • That Doug only has bronchitis and sinusitis, and NOT pneumonia, although the doctor said he was on the verge of it.  (He is now on 2 rounds on heavy antibiotics, cough meds and acetominaphen.)
  • That I was feeling just well enough from my bout of sickness to take care of them both over the weekend.
  • For my wonderful family who fed us and brought us groceries.
  • For my wonderful friends who kept in close touch, in case I needed anything.
  • That my mom's washing machine is right next door, since ours died last week.
  • That our truck keeps running, even though the "check engine" light has been coming on since Friday, but there hasn't been time or energy to get it to the shop.
  • That God meets every need, in His time, before the load becomes more than we can bear.

What are you thankful for today???

 

Foto Friday

by ObtainingMercy, posted in Blessings, Foto Friday, Isaac Update, What's Happening

How do you keep your blog readers interested, after indulging in a political rant?

By posting pictures of puppies, of course!

~~~~~

Meet Kepler.

Kepler1

Or alternatively, at 2:30 a.m.,

Remington, Kestrel,

Kepler9

Lucy, Keebler,

Kepler6

Rupert, PeePot,

Kepler

Daffodil…

  Kepler8

It's hard for my 40-something brain to remember names of famous scientists that early in the morning!

As you can see, though, no matter her name…she is bringing us great joy!

KeplerC

In case you can't tell…he adores her…

and would eat her up, if we let him…sorry for the blurry action shot.  My brother had to move quickly to catch this almost-puppy-paw munch – with his Blackberry, no less!

KeplerD

Many thanks to Mr. Mark and Mrs. Sonja for Isaac's new friend!

~~~~~

I hope y'all have a restful weekend.

We probably won't, but it will all be worth it when this potty/kennel training is behind us.  And even if we aren't well rested, we will be more health-ful due to the laughter!!!

🙂

Blessings,

Alesha

Surgery for Isaac and Prayer Around the World

by ObtainingMercy, posted in How Great is Our God, Isaac Update, Thankful on Tuesday, What's Happening

Whew!  What a whirlwind 20 hours it has been!  Not even a full day – it's hard to believe.

Last night, Isaac would not go to sleep and we could tell that he was in pain.  Eventually we saw some swelling in his groin area.

We got him into the children's hospital as quickly as we could (around 1 a.m. this morning) and after sonagrams and x-rays, it was determined that Isaac had this condition.

They took him into surgery immediately.  Unfortunately, the condition had damaged the left side and it could not be saved.  Fortunately, the surgery was short and he had no complications.

We were sent home within 5 hours of his surgery.  He has been resting easy, with no complaining about pain or discomfort, since we arrived home.

I was so grateful for the many prayer warriors who stormed the throne of the Father on Isaac's behalf. 

  • It was amazing to have friends in the mid-west pick up the prayers as soon as we put it up on Facebook. 
  • They were soon joined by my west coast friends. 
  • It wasn't long after that before I heard from my friend in Japan who joined the prayer chain. 
  • Then my early rising east coast friends completed the circle, as they read and prayed for Isaac,
  • Followed quickly by another set of folks from the mid-west!

Isn't that just the most incredible thing?  We were amazed and awed to know that Isaac was being lifted in prayer all around the world.

We are – truly – so thankful for each of you who prayed for us!

Thank you!

Alesha

 

Who Needs Caffeine When You Have Adrenaline?

by ObtainingMercy, posted in How Great is Our God, Isaac Update, What's Happening

By way of review:

Isaac has this inserted into his abdomen. 

button

That little hole in the top goes down through the ballooned part, directly into his stomach, which is attached to the wall of his abdomen. 

Think of it as the earring hole in your ear.  The button fits through the hole.  (We call this hole a stoma.)  After the button is through, we use a syringe filled with distilled water to inflate the balloon.

We attach this tube into the top of the button.

Right angle feeding tube

We insert this syringe into the wide end of the tube (without the plunger),

Syringe

and pour his formula into his tummy. 

This morning, we found this laying at the foot of Isaac's bed!

button

He had pulled it out completely inflated!!!

Lest you think it was no big deal for us, let me tell you, this has NEVER happened before.  It has come out before, during feeding, but not inflated.  Usually, it is because the stomach acids have eroded the material and the water filling the balloon has leaked out, leaving nothing holding it in.  Since we were right there, we could replace it quickly.

If the stoma closes, and you can't get the button in, it mean emergency abdominal surgery.  We have no other way to get medication or nourishment to him.  If we try to give these things by mouth, he can choke or aspirate, leading to pneumonia.

So, you see, it was a true medical emergency.

God has created our bodies to be incredible healing machines.  Isaac's body knows that it isn't supposed to have a button in his stomach.  We have been told the stoma will immediately begin to close up when the button is removed.

We had NO idea how long it had been out. We had no idea how much the stoma had already closed.

We grabbed all of our supplies. (We keep the replacement kit right beside his bed.)  I cleaned off the area and could still see the top of the opening.

I said to Doug, "Pray!"  And he did!  Out loud! That was totally for my own personal benefit, let me tell you!

Praise be to God, that button slid right in…just a little resistence at the end…Isaac jumped, but didn't holler or cry.  I inflated the balloon and we were finished – just like that!

Whew!

And Thank You, Lord!!!

It all took about 2 minutes.

Afterwards, I thought "Who needs caffeine to wake up?  That jolt of adrenaline did just fine!!!"