ENT Does Not Mean Ent

Warning: Lord Of The Rings reference in title.  This post actually has nothing to do with Lord Of The Rings, it is merely the ramblings of a tired parent.

As if on cue, the night we heard from the sleep clinic Asher started gasping in his sleep and waking up crying in fear.  This has happened every night since.  So, when we called to set up our consultation session with the doctor in charge of the sleep clinic and they told us the first opening was in mid-February, we were understandably concerned.  After we explained to them what has been happening, they put us on the top of the 'Cancellation Wait List'.  So far, his appointment has been moved to mid-January.

The nurse at the sleep clinic made sure to tell us that Asher won't die in the night because of these gasping fits.  For some reason this was very reassuring to Adam and served to freak me out.  Not sure why the difference there.  Maybe it has something to do with Adam always being the one to see the worst case scenario right from the start and me being a bit on the optimistic side; he had already seen all the things that could happen in his own imagination while I was tripping blissfully along thinking it'll stop sometime soon.

Anyway, we've learned that if we can get into him as quickly as possible when we start hearing the gasping start, he won't cry and will fall right back to sleep.  It's a little hard to do at 3 or 4 in the morning when we're really groggy but we're getting it down to a science.  He also seems to be getting used to it and has been able, on occasion, to fall back asleep after an episode with little to no help from us.

Last week, when I was sitting in on Asher's speech therapy appointment I talked to the therapist about our concerns and what's been happening.  She recommended a local doc who also works at Children's, an ENT doctor who has seen a lot of the kids connected with the therapy office.  He can see Asher at the end of December.

The ENT appointment will just check the obstructive sleep apnea.  We still will need to get in to the sleep clinic to check his other apnea and the REM sleep he is missing out on.

That is all the update I have for now.  Caedmon continues to chug along and heal. His energy is back and he is as rambunctious as he can be with a full leg cast on. You can't keep that guy down for long.

Sleeping Is Good

Yesterday we learned that Asher has mild forms of two different kinds of sleep apnea.  They are mild enough not to be troubling to the doctor.  What is of greater concern is that he is not able to get into and stay in deep sleep.  Asher seemed to want to confirm this by waking up and staying up for 3 hours last night.  There is some question as to whether the environment and condititions of the sleep study itself played a roll in the lack of REM but we have a consultation scheduled so we can get some questions answered and find out what we can do to help him SLEEP!  It is a really good thing, Asher, if only you would realize it!

Asher continues to make leaps in his development.  He is standing a lot more, signing more, making more varied sounds and curious about everything.  A few days ago he surprised us by climbing up into a kid chair and then standing up on top of it, holding on to the stair rail behind it.  Not safe, but it's nice to see him showing initiative in exploring. :-)

Today, he heard the noise of our neighbor's snow blower.  He got himself right up on that chair and started shouting hello to him and knocking on the window.  He was pretty proud of himself.  Now, how to keep Curious Asher from hurting himself in all his curiosity.

Snow Therapy

Caedmon continues to heal.  He meets with his orthopedist tomorrow to get a hard cast.  His energy improves daily, as well as his appetite.  Each day he's commented less often about pain and last night was his first solid night of sleep.

A few days ago we celebrated Caedmon's birthday.  He wasn't sure he wanted to celebrate but finally decided presents would be okay.  He didn't care for the chocolate cake or the special dinner we made, poor, recovering body, but we scored big on a remote control car that can run into anything and keep going.  God bless the makers of that car, it keeps him happy for large chunks of time and I don't have to chase it down and fix it a million times a day. :-)  He's also been playing with legos, painting, setting up fights between Superman, Sullivan (from the Monsters movies), a babydoll and Christmas mooses and making me lists, mostly of E's, O's and C's, for shopping.

We've been figuring out how to go about our day with a less mobile boy.  It definitely slows our day down a bit and our regular routine has needed to be tweaked.  It has been a good mental stretch, getting creative with life.  One thing we could not miss, playing with snow.  Caedmon loves snow, especially throwing snowballs.  It snowed on his birthday, thank You, God, and this morning we woke up to even more.  So, after breakfast we wrapped his leg up in plastic, laid some towels down and brought the snow to him.  He made a snowman and threw lots of snowballs.  He loved it!

Heading Home

After a night of fitful sleep, snatches here and there that maybe added up to 2 hours total, we are awaiting our discharge papers.

The nurses came in every hour to hour and a half. Caedmon woke up every time. He was always polite but at one point he said to a nurse, 'I keep trying to sleep and you keep waking me up.'

This morning Caedmon said to me in a sad voice, 'Mom, I hate surgery. I don't ever want to do this again!' 

Me too, Buddy, me too.

This morning he had had enough. The nurse tried to get him to take one last dose of medicine. He would not do it. I tried all the tricks that worked through the night, he would have none of it. We tried holding him down and squirting it in his mouth, (yeah, I'm tired too), he spit it out all over. Then, the nurse tried to put one last dose of iv meds through his iv only to find out quickly that it had closed off since they had disconnected it from the main line at 5am. It caused quite a bit of pain, and added insult to injury. 

Poor guy!

He is now sleepily watching a movie while we wait. I'm hoping we are sent home before he falls asleep because I really don't want to have to wake him.

Recovery time upcoming.

Post Surgery

Caedmon's surgery went well! He struggled a little coming out of anesthesia but once he shook off the grogginess and nausea he was his normal, sunny self. 

Adam took Caedmon to the hospital and stayed with him until he woke up and was taken to his room. Adam then drove home and I jumped in the car to head to the hospital. 

When I came into Caedmon's room he greeted me by saying, 'I like surgery, Mom!' as he munched on some broccoli. According to the nurse, the broccoli was his idea. The young man taking his order kept pushing sugary stuff and meat. Caedmon said he needed broccoli and grapes, though he did agree to a chocolate cupcake. :-) He told the nurses he couldn't eat it until he had finished his broccoli. All after Adam left and before I got there. What a kid!

So, now he's resting comfortably, watching Toy Story. I'm encouraged that we are in a different section of the hospital, a very quiet one with our own bathroom, and I am hoping for a chance of sleep tonight. 

Happy Sabbath, everyone! Thank you for your prayers!

Whatcha Gonna Do?

On Tuesday we learned that Asher's kidneys are no worse and no better.  He has not had an infection in quite a while so his doctor is happy to wait and see.  Any infections will mean schedule surgery, any worsening will mean surgery, but we will see what the next 6 months brings.  

A fun side note to Tuesday's urology appointment was that for some portion of time Asher had to be strapped to a table and cathed so they could record how his kidneys responded to a dye they put in his body.  He was not so thrilled with this set up and started signing 'stand up' to Adam, over and over, with the sound 'uh'.  We didn't even know he knew that sign!

Thank you, radiology department, for being the catalyst for Asher to show he knows so much more than we realized.

Tuesday night, Adam took Asher in for the sleep study.  It was going to be me with Asher but since Caedmon's surgery was scheduled and we try to swap hospital overnights, it got to be Adam.  Lucky me.  

Apparently, a children's hospital sleep study lab is filled with people who don't know how to handle children who move in their sleep.  Go figure.  It also employs people who start patting your child's bottom when they start to move in their sleep and are surprised when the child wakes up and cries to see a stranger hanging over them patting them.  

What?!  

So, Asher slept for 3 hours, from 8-11 pm.  The nurse/orderly/medical assistant woke him up at 11 and Adam got the wonderful experience over the next 3 hours of rocking Asher to sleep, lying him down in the huge, industrial crib with sides that squeak terribly when you pull them up into place, having the medical staff rush in (because they had a video camera on and could see when Asher fell asleep) to fix all the wires and reposition things, having Asher wake up because of all the bustle and people touching him, and starting all over again.  At 2 am Adam finally said to one of the staff, 'This is not working.'  She agreed, they unhooked everything from Asher, and Adam and Asher got home around 3.  

We were told it would be two weeks before we heard the results of the test.  We don't have any idea if Asher slept long enough to tell anything.  The funny thing is that one of the reasons we wanted the test done was because he wakes so easily and seems to have trouble getting into a deep sleep.  Don't you think people working in a sleep study lab would be prepared or have experience with that?  So odd.

So, we're not sure where to go from here but await any news.

Caedmon Update

Caedmon and I will be spending Black Friday in or near the operating room.  Please think of us as you decorate for Christmas, go shopping or eat leftovers.  Better yet, bring us some leftovers! Hahahaha!

With all these procedures on top of the other regular items on our plate, I've been feeling myself becoming overwhelmed with all of it.  It's amazing how God shows His all-knowing powers in moving us slowly where we need to be until we are in just the right place at the right time.

For months He's been showing me the importance of stillness and silence in His presence.  He's been speaking to me that busy-ness in ministry is not an excuse for not taking that time away with Him. He's shown me multiple times in the last few weeks that I am human and I need to embrace my human limitations, allowing myself the rest, recuperation, and reflection time I need.

Last night, before bed, He brought to mind one of my favorite passages of scripture, one I had completely forgotten about for years.  It is from Isaiah 30:15:

This is what the Sovereign Lord, the Holy One of Israel, says, "In repentance and rest is your salvation, in quietness and trust is your strength, but you would have none of it." (NIV)

Pretty appropriate for modern life.  He tells us exactly how to be saved from the craziness of this life and exactly how to be strong and yet we don't listen, I don't listen.  The next few verses God goes on to talk about how Israel would get so worked up that many would run in fright from one person, all because they would not rest and be still.  I think of how often I stress out about things that are not worthy of my energy because I have not allowed myself time to take it to God.  The passage ends with this powerful reminder:

 18 And therefore the Lord earnestly waits, expecting, looking, and longing to be gracious to you; and therefore He lifts Himself up, that He may have mercy on you and show loving-kindness to you. For the Lord is a God of justice. Blessed (happy, fortunate, to be envied) are all those who earnestly wait for Him, who expect and look and long for Him; for His victory, His favor, His love, His peace, His joy, and His matchless, unbroken companionship! (AMP)

Wow!  So much in that verse!  You could unpack it for weeks, like the most amazing Christmas present ever.  But right now, I am just clinging to the fact that He doesn't give up.  He just earnestly waits for me because He really wants to show me grace and mercy and love.  So I'm entering this time of medical busy-ness with the heart to be still and the promise of peace in the midst of it all.