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Thursday, May 27, 2010

Mikey Update 5/27/10

Caution for young eyes: Brief mentions of male anatomy, though I tried to code it a little.

We went to the pediatrician Tuesday and Wednesday.  I thought Mikey might have an infection somewhere on or in his man parts because they forcibly retracted him to put in a catheter (not necessary, but many American health professionals don't know what to do with an intact peeper).  Other than some bruising and a probably yeast infection, he's fine.  The doctor doesn't think there is any permanent damage.  For more information on circumcision, please visit the following sites:

http://www.drmomma.org/
http://www.doctorsopposingcircumcision.org/

We managed to get into a cancelled spot for our modified barium swallow today (to check for aspiration, which we suspect was caused by the vascular ring).  Thank God for small favors; the next opening was in July.  I'll give you the abridged version here.  Mikey cried and fought and wouldn't take the barium willingly.  After some really ridiculous generalizations from the speech pathologist and a big fight on my end, they found a workaround, and Mikey passed with flying colors.  With yet more ridiculous reasoning, the speech pathologist refused to sign off on feeding Mikey by mouth.  She said it was up to the pediatrician.  She recommended we wait for guidance from the speech pathologist who does our evaluation for feeding therapy, and the pediatrician agreed.  It will likely be days before we can even schedule the evaluation, and I have no idea what kind of availability they'll have.  So now we wait again...

Saturday, May 22, 2010

Mikey Update 5/22/10

Mikey went into surgery at 8:30am on Tuesday.  He was done by 9:30.  The surgeon said everything went perfectly, and everything was exactly as they expected.  (They told us one new piece of information that could potentially affect Mikey in the future.  A branch off the trachea (called a "bronchus") comes off the trachea a little higher than normal.  If surgery is being done in the area, he has a higher chance of experiencing a partial collapse of that lung.  It's nothing to be concerned about outside the operating room, however.  They had seen this anomaly in the 3D image of his CT scan and confirmed it during surgery, but they'd never mentioned it to us before.)  They tried to extubate him at the end of the surgery, but he had a few small issues, so they reintubated him.  Aside from a chest tube, which is frequently required, everything was perfect.

I had been well-prepped for what I'd see after surgery (thank you, Sarah!), so I wasn't shocked by his appearance.  In fact, he looked far better than I'd anticipated.  The tube was small and to the side, and he had great color.  The only thing that surprised me was the pulse/ox meter on his forehead.  It looked a little abducted-by-aliens to me.  :o)

They wanted him to tell us when he was ready to be extubated, and boy did he ever!  At 2pm, like flipping a switch, he suddenly started breathing - or gasping, really - over the vent and trying to swallow the tube.  Thankfully the alarms were all madly going off because I didn't really want to leave him to go find a nurse to tell her he was *very subtly* telling us he was ready.  They tried to put off pulling the tube, but thankfully I put up enough of a fight that they called in the extubation team.  (I have no idea why they'd rather attempt to sedate him with morphine and therefore REALLY delay the process than just get it out.)  The respiratory therapist and crew arrived promptly and got the tube out so fast I totally missed it.  He was much happier after that, however a little hoarse.

He needed morphine for the pain for the first day and night, but he only had it for a couple of procedures after that (an x-ray and the removal of his chest tube).  He's doing well on a regimen of Tylenol with codeine and ibuprofen, as long as we give it within a half hour of the minimum time between doses.  If we don't, he lets us know!

By Thursday he was acting like himself and ready to play.  He was still very sore, though, and didn't want to cough up the junk in his throat because it hurt his back, where the thoracotomy was.  Also, I'm sure the chest tube hurt, since he freaked anytime anyone went near it.  He was a completely different boy after the chest tube was out Thursday at 11am.  The nurse practitioner who removed it said older kids report pain for about an hour after the removal and nothing after that.  It took Mikey 5-10 minutes to act like he'd never had a chest tube.  He was laughing again!

Friday he had physical and occupational therapists come by for an evaluation.  That was playtime!  He had a blast rolling around on blankets on the floor with the two women.  They said they didn't see anything about the surgery that needed attention, but they still recommended a regimen of therapy sessions because of his neck and back issues.  The physical therapist wanted to make sure we follow through with our already-scheduled physical therapy (PT) that starts June 1st, and the occupational therapist wanted to add weekly occupational therapy (OT).  The speech pathologist came by later.  After we straightened out the reflux (which he does not have) versus aspiration (which he does) issue, she went about arguing with me about pacifiers and breastfeeding and scheduling the modified barium swallow (MBS) and whatnot.  In the end we were on the same page, and she realized we already do everything she wants us to do, we determined she is pro-breastfeeding, and we decided that the MBS will be the first week of June, and speech therapy (ST) will follow.  Thankfully, our PT office also does OT and ST.  Whew.

We were discharged yesterday (Friday) afternoon.  Mikey was actually happy to be in his carseat!  When we got home, he smiled bigger than I've ever seen.  The awareness of babies never ceases to amaze me.  We didn't let him really play until today, and he didn't want to quit.

We did have a bit of a situation today.  His chest tube site had been leaking more than it should, and when we went to change the dressing today, it spurted like a fountain.  Yesterday a call to the surgeon's office left us with directions to go to an ER if it got worse.  So that's what we did today.  We went to the hospital by our house.  They did a chest x-ray, put us in the first available room, and made us wait a year and a day in that room (well, curtain).  First the physician's assistant (PA) came in to tell me he saw the x-ray but didn't know what he was looking for; he didn't see anything.  I told him he was looking for a tension pneumothorax (because that's what the doctor in triage told me she was looking for on the x-ray). He said "Oh, good!  That wasn't there.  I thought I was going crazy!"  (Seriously?  Did this guy get his diploma in a back alley somewhere?)  Then they came in to tell us they couldn't treat us; we have to return to the hospital (across town) where the surgery was done.  They said the person who told us to go to any ER was "an idiot" and they only take care of well kids.  Yes, it made no sense.  They attempted to call the other hospital, and I called the surgeon's office to talk to whoever was on call.  The nurse practitioner (when she called back 5 minutes later) told me she'd received a page from the hospital, but they listed my number as the call-back number.  (Now who's the idiot, eh?)  It took some fighting, but after threatening to walk out or sign us out (against medical advice, as the PA pointed out) and convincing him that waiting for a call back was futile (and they need to try again), they finally agreed to page the nurse practitioner again.  The doctor came back in rather quickly and anxiously and asked if I had a number they could call to page the NP.  At this point, I was all but laughing at the general incompetence and gave her the number.  After another inexplicably-long wait, they came in and told me exactly what the NP had told me, and they insisted I wait for those instructions in writing before they'd discharge us.  Whatever... At this point, I had over three hours invested in this process.  (Incidentally, they did look at the site, and by this time it had stopped leaking.)  The NP suspected there had been a pocket of fluid at the site, and we opened the floodgates when we removed the dressing.  Since the leaking had stopped, we took the NP's advice and went home.  We haven't had a problem since.  I wish we'd called her this morning before going to the hospital!

Because I always end these novelas with a God-is-good statement, I have to share a short story here.  Tuesday or Wednesday, Mikey was really hurting, so I got really close and started saying, "Jesus take the pain away," over and over.  It only took a minute or two before he suddenly calmed down.  I thought that perhaps the words had been soothing, but it was highly suspicious.  Today, in triage, there was a man moaning in pain, thinking he was having a heart attack.  I started saying, inaudibly, "Jesus take his pain away," over and over.  After a couple of minutes, I stopped.  As quickly as I stopped, he stopped moaning.  There was no way he knew.  God IS good.  Maybe that's why He sent us to the ER this morning...

Wednesday, May 19, 2010

Mikey Quicky 5/19/10

Surgery went perfectly and quickly! He was taken off the respirator yesterday afternoon. He had his first food (breastmilk) today. They won't take his chest tube out until tomorrow, and he's been on oxygen a few times, but otherwise he's doing great. We'll probably go home Friday (would've been tomorrow if not for the chest tube).

Saturday, May 8, 2010

How can God let bad things happen?

A friend inspired me to raise a question: do you see any conflict in this reasoning?

God is all powerful, but He doesn't ALLOW bad things to happen to us; they just do.
 
This friend is one of many people in my life who feel this way.  A minister, in fact, reprimanded me in front of the entire women's ministry for believing God allows bad things to happen.  I was alone in my beliefs that night, with 15-20 church ladies staring at me in horror and disbelief.
 
I get uncomfortable when Christians argue that God isn't responsible for bad things because that means they don't believe He is in complete control, regardless of how much they argue they do.  The problem is people don't want to believe God would allow bad things to happen.  I understand that; it's in conflict with the idea of a loving God.  However, I feel much better knowing He allowed something to happen to me than thinking bad things just come along.  At least I know he preselected my bad thing knowing I could handle it.  What's more, how could we possibly appreciate God's mercy and grace or even acknowledge that we need God if nothing bad ever happened?
 
I speak nowhere near as eloquently on this topic as my friend, Jen, so I encourage you to visit her blog and read her take on the matter.
 
Itsy Bitsy Family: How can God let bad things happen?
 
Life: God dishes it out, so I have to trust Him with my portion.

Thursday, May 6, 2010

Maybe I'm doing something right?

Three times this year I have been blatantly attacked by demons.  (I know you're thinking I'm nuts right about now, but bear with me.)  They grip my body when I'm not fully awake and hold it hostage.  I cannot move nor speak, and since I'm not fully awake, I'm limited in what I can try to do outside my mind.  All I can do is pray once it's over.

On February 20, I thought I heard Ellie over the monitor, but I immediately realized what it was: a demon.  I braced myself, pushing back in my chair, right as it slammed me back into the chair.  (I don't know how I knew to sit back, but I'm glad I did!)  By this time, the sound was like deafening static.  I was conscious of Mikey sleeping in my arms and grateful that the attack targeted only me.  I previously have tried to call out to Mike, hoping he can rouse me, but I'm unable to get sound to come out of my mouth, even once I can open my mouth.  (I can't move at all at first.)  Then I try to hit myself or something, anything, to break free.  I'm never really moving, and I come to just as I regain movement in my somewhat-unconscious mind.  The "thing" leaves me as quickly as it comes, and all is peaceful again.

I didn't try to call out to Mike this morning because he'd just left.  The attack happened literally as soon as the bedroom door latched behind him.  I came to moments before he left the house.  Knowing Mike was not there, I called to Jesus.  (At least that doesn't require the ability to speak!)  The "thing" left me more quickly, like being sucked into a vacuum.  I don't think that's a coincidence.

That night I was musing about how it only happens in partial consciousness.  I figure that's how they get in - through dreams.  I remember a pastor on the radio recounting a time when it happened to him - same thing, no ability to move or speak or breathe freely.  His story helps me to know I'm not crazy.  I can't fear it happening again, though, or it certainly will, this peculiar type of enemy attack.

(If you don't already think I'm nuts, keep reading...I'm sure you'll get there.)

My most recent attack was actually a waking attack.  I was in my closet going through my journal, recounting my experiences in my head, and just as I was about to put two Godspeaks together, I heard a very freaky noise.  It sounded like a cat crying in our bathroom.  I couldn't make out what it was, and it was so weird I got up to check it out.  As I got to the doorway between the bathroom and bedroom, the sound suddenly became Ellie's crying through the monitor.  Now, I KNOW that wasn't the sound I heard.  Had it been Ellie crying, I would have finished my thought first, because the type of cry was that of a lost pacifier, not that of an emergency.  I knew right then that something had lured me away from my journal to keep me from finishing my thought.  I was a little scared, though, because I didn't know if Ellie really had cried or if the "thing" had imitated her crying to try to throw me off its path.  Then it occurred to me that if it was Ellie crying, the "thing" had probably made her cry.  Mama bear mode kicked in.  These "things" have never gone after my children before!  I went into her room to check on her, and she was sleeping like a log...no sign whatsoever of having been awake and crying just moments before.  I will always wonder if that "thing" really made her cry or just imitated her, and I don't know what is more disturbing to me.

I went back into my bedroom and almost crawled into bed, but then I remembered that I'd been about to discover something.  I thought that I really needed to go to bed, but then my brain shot back, "That's what it wanted!"  I went back to my closet and finished what I'd started, feeling a little powerful because I hadn't let the "thing" beat me.

Most of these attacks happen the nights I write one of these posts in my journal and plan to post it the next day.  Incidentally, my computer also breaks whenever I'm about to post this particular article (so I'm using Mike's computer...I hope these "things" don't go after Mike's computer now!).  Also, our dishwasher was having issues for weeks while I was trying to write this post, and the air conditioner broke in my car.  Sure, you could argue that these are coincidences.  I feel safer assuming they're not.  You know, staying aware and all that...

Even as I type this post, there is a strange noise in my house that steals my attention and, as I suspected, is not coming from anyone or anything that belongs in my house.

Since these attacks, I've done a little Internet research and found the semi-wakeful attacks to be not uncommon.  They describe my experiences perfectly.  My research led me to how demons are invited in and how to get them out.  For weeks after the attack on February 20, I felt a presence on the ottoman of my chair, sitting there in wait.  I decided to try out a statement suggested on one of the sites, demanding the demon leave:

"I now command you to leave me right now, and you are to never, ever come back on me again. GO NOW – in the name of Jesus Christ! I repeat – GO NOW in the name of Jesus Christ!”
(from Battle Command Against Demonic Spirits, also a great site that relates well to my experiences)


I felt a little silly, but I meant it just the same.

I didn't feel anything right away, but, again, I was feeling silly.  Over the next few days, the presence I felt started to more closely resemble a memory; I still feel emotions when I walk by the ottoman, but I don't feel the ominousness that I did.

I know nobody likes to talk about demonic attacks for many reasons.  I think it's important, though, especially for evangelical Christians who might be discouraged if they don't understand what's happening.  There is no reason to fear these demons because we have Jesus to protect us.  I just think I must be doing something right to be a target...and of such a specific, obvious attack.

[Just in case you were curious, here's the discovery I was in the process of making (it's insignificant to anyone but me, but to me it's huge): My sadness about not nursing doesn't linger now after my wrestling match with God.  I was still sad after that conversation, but I wasn't angry or confused or any of the other negative emotions I felt.  At this point, I thought the sadness was still there because I expected it to be there.  I just realized that it had gone; God had replaced it with peace and acceptance.]

Wednesday, May 5, 2010

Let God Work

Last night I felt God put it on my heart to send out a call to action on facebook: 40 Days of Prayer for Illegal Immigration.  I had visions of a snowball effect, hundreds of people agreeing to join in.  I thought this just might be the unifying event necessary to effect change, on however small a level.

Sure, I expected many of my invitees to decline, but I was surprised by a few of the first to do so.  These are people who I know pray at least daily; yet they can't commit to saying a prayer a day for 40 days?  Then my self-consciousness trigger was pulled: Do they think I'm asking them to support or oppose the new immigration law?  Certainly not, since I negated that in the description, but what if they didn't read the description?  My mind started going all sorts of bad places, from anger to paranoia to disappointment.  I even began to question whether God's hand was in this at all.

Suddenly I felt the aforementioned peace wash over me.  I knew right then that God would do with it what He'll do with it.  He did put the idea in my head, but the "snowball effect" was all my creation.  Let God work.  I have to remind myself of this often.

The devil definitely knows how to push my buttons.  This out-of-control negativity spiral of doubt and judgment started not two hours after I'd posted the event.  It's a good thing I keep in constant touch with God so He can set me straight.

Let God work.  Let God work.  Let God work.

I think I found a new watchword.

Too busy to be happy?


Why is it we often make the choice to ignore what makes us happy?  Sometimes we overfill our schedules.  Sometimes we feel obligated to do extra chores or favors for other people.  Sometimes we just choose to stay where we are.  We do all this while our happy buttons blink desperately to be pressed.

I love to read.  I'm happy if the only chance I have to read is while I'm on the potty; at least I'm getting some reading in.  Lately, though, I've been choosing to play Sudoku during these rare moments.  I tell myself that I like Sudoku, too, and it requires less concentration, and I'm really tired and don't want to engage my brain, and...

...and then my library books are due with no more renewals and I sadly drop them into the box.

I also love to write.  Sometimes I write a couple of words, other times I write pages and pages of stories or revelations or freewriting.  (Most of my writing is really freewriting.)  At the very least, I write down the daily happenings with the kids I want never to forget.  The latter is quite important to me, yet I haven't done that in over a month.  What do I do instead?  I watch TV and play on the internet.  I tell myself that I like TV and the internet, too, and they require less concentration, and I'm really tired and don't want to engage my brain, and...

...and I don't remember any of the cute things my children have done or firsts they've had in the last month, and I didn't write them down.

My writing really picked up when my computer was at the doctor instead of distractingly sitting next to me all evening.  I told myself that when I got it back I wouldn't fall into the same bad habits (read: addictions).  I hoped that when my computer had to go back to the doctor I'd take the second chance to change bad habits.  Instead I use the internet on my cell phone.

I feel like I'm stuck in a vicious cyclone of uselessness.  I want to get rid of the TV and all my online memberships.  Well, except for my blog... and email... oh, and I keep touch with people on facebook... and Mike and I don't watch that much TV... wait, I know that's a lie... but he'd never agree to it... but... but... but...

I hate the word "but."

There's one more thing that makes me happy: reading God's word.  Actually, it's the only thing I really need.  It's as important as eating and breathing and exercising and sleeping.  But I don't do it because... because... I DON'T KNOW!  I have no reason!

Why do we do this to ourselves?  I know some people think, "It's too late to become a professional [fill in the blank], so why bother doing it at all?"  Um, hello?!  Because it makes you happy!  Others think, "I don't have time to do something just for me."  (Mothers, do you see yourselves here?)  Duh!  You can't take care of others if you don't take care of yourself!  I often think, "I need to sleep, and if I start I'll be at it for a while."  Why the all-or-nothing attitude?

One friend listens to audio books while she goes for a walk with her kids.  Other friends have Bible study playdates.  (I've done that, too, but we have yet to find our momentum.)  I won't tell you what to do, but I am going to hide the Sudoku, turn off the TV, invest in some more journals and pens and make a commitment to myself to do the things I love, 1 minute at a time or hours, should I get so lucky an opportunity.

Monday, May 3, 2010

Saturday, May 1, 2010

Mikey Update 5/1/10

Okay, okay.  I know this is sorely overdue.

We finally got to meet the surgeon, and the surgery is scheduled for Tuesday, May 18th.  The surgeon said that he isn't completely sure this will fix the aspiration, and Mikey may have swallowing issues his whole life.  The surgery is still necessary, though, to prevent breathing problems as Mikey grows.  The vascular ring could potentially compress the trachea, even though it's not now.  The surgery is very invasive (left thoracotomy), and there are possible complications including hitting the laryngeal and vagus nerves (causing lifelong speech problems) and a potential chest tube.  The surgery is only 1-2 hours, according to the surgeon, so at least the anesthesiology risks are low.

We also went to a physical therapist for his neck and back issues.  She said all I've been doing is perfect, and she gave me another stretch to do.  Also, she suggested I do that stretch and another I've been doing 10-12 times a day.  That's a lot of crying...for both of us...  We start seeing her twice a week after the surgery and recovery, June 1st to be precise.  I think she's great, and Mikey seems to like her, so I'm optimistic.  All the kids at the practice think their therapy is playtime!

We have a long road ahead of us, relative to Mikey's little life so far, but at least we're moving forward toward recovery!

Thanks for all your prayers and notes and kind words.  Nothing goes unnoticed, even if I'm too spacey to acknowledge them formally!  (I should add here that Mikey has decided 4:30 is a good time to wake up...no matter when he went to sleep...lucky me...)

God is good, and He takes care of us.  He put a great surgeon in our path (thanks, Sarah!), another great surgeon at our disposal for any and all questions (including getting the scoop on the aforementioned surgeon), wonderful friends and family, some of whom have been through this in some form and others who just selflessly give us support and stress relief, and, most importantly, His Son who gives us hope in all circumstances.  God is good.

What a friend we have in Jesus,
All our sins and griefs to bear!
What a privilege to carry
Everything to God in prayer!
Oh, what peace we often forfeit,
Oh, what needless pain we bear,
All because we do not carry
Everything to God in prayer!

Have we trials and temptations?
Is there trouble anywhere?
We should never be discouraged—
Take it to the Lord in prayer.
Can we find a friend so faithful,
Who will all our sorrows share?
Jesus knows our every weakness;
Take it to the Lord in prayer.

Are we weak and heavy-laden,
Cumbered with a load of care?
Precious Savior, still our refuge—
Take it to the Lord in prayer.
Do thy friends despise, forsake thee?
Take it to the Lord in prayer!
In His arms He’ll take and shield thee,
Thou wilt find a solace there.

Blessed Savior, Thou hast promised
Thou wilt all our burdens bear;
May we ever, Lord, be bringing
All to Thee in earnest prayer.
Soon in glory bright, unclouded,
There will be no need for prayer—
Rapture, praise, and endless worship
Will be our sweet portion there.