Saturday, November 30, 2013

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.

Friday, November 29, 2013

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!

Thursday, November 21, 2013

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.  


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.

Tuesday, November 19, 2013

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.

Monday, November 18, 2013

Hospital Time

Tomorrow morning Asher and Daddy will head to Children's Hospital to have imaging done on his kidneys and to have a chat with his urologist.  This is a recurring procedure as his kidneys continue to remain enlarged and our doctor is hoping they will eventually correct themselves as he grows instead of having to resort to a surgical solution.

Tomorrow night Asher and Mommy will head to a different hospital so they can hook Asher up to a million different wires and have a sleep study done.  They are looking for Obstructive Sleep Apnea and hopefully a solution to help him sleep more peacefully at night.

In other Asher news, he has started cruising everywhere and walking holding onto Mommy or Daddy's hands!  This has been totally exciting!  Today in PT he walked in a walker much cooler than the one in the picture all the way around the entire building.  He was pretty tired by the end but it was so awesome to see.  The walker in the picture was sent home from his EI PT.  He enjoys it sometimes.  Like when he gets to chase his brothers or walk to Mommy for a hug.

In Caedmon news, we are waiting for the date for his next surgery.  His ankle has been swelling and bruising for several weeks now, which means he cannot walk or stand.  You can imagine how difficult this can be for an active 4 year old.  While Mom and Dad don't relish the thought of sending him off into the operating room again, at least we will be heading in the direction of returned movement and healing.  It will be so nice to have him on his feet again.  It should be an 8 week healing process after the surgery is completed, if all goes well.  And then, we'll get to see Ms. Carrie again and start building those muscles back.