Life Starts Now.

Living each day to the fullest, because we know first-hand just how fragile life can be.

Thursday, March 31, 2011

Update

Yes, the trach is out.  We're home now, and we're on day three with no trach, no suction, and no emergency bag.  The expensive diaper bag that never got to hold diapers, now does.  We're transitioning well.  Very well actually....although when I got home it was something short of frantic to start reorganizing Joel's room.  The respiratory stuff I'm holding for another family and missions trips, and after nursing is gone (Sunday) we'll move the couch downstairs. 

It's weird.  I thought I'd be a crazy freak watching Joel every second, but I actually have to remind myself to.  The moment I took the trach out, breathing for him normally seemed so easy.  And natural.  His sats actually jumped from 92 to 96 upon capping his trach, and they've stayed high since taking it out completely.  Some things will take a while to adjust to, however.  Sneezing.  Sneezing isn't as fun as it used to be....it now ends up a cough/sneeze/gag.  He's used the the gag-routine so he gets over it quickly, but I can't even imagine what that must feel like for him.  Hiccups are different too.  His throat wasn't able to close before, so it made a much different sound.  He has a panicked look when he gets them, which is often, so there's lots of applauding going on for each hiccup. :)  Coughing has gotten easier, but I think he expects us to just suction him if he doesn't do it?  He doesn't want to cough when he doesn't have to, so that may take training, but his cough is strong, and I'm thankful for that right now. 

Joel's new favorite things:
-Blabbering about everything and anything.
-Grabbing at his bandage.  I'm sure it bothers him, but it might also just be habit from taking of his HME's
-Talking himself to sleep
-Whispering
-Shaking his head no.  Didn't think about this until yesterday, but that giant wad of scar tissue could have been from the trach rubbing on the back of his throat from this very gesture.
-Attempting to crawl.  He took two "hand steps" today.  Given that he's exerting less energy to breathe, I think his physical mobility is a lot easier now.

And my new favorite things.
-Hearing him breathe from his mouth and nose.
-Watching him discover his new sounds
-Being able to sleep next to him
-Getting to hold him up to me, with his head nuzzled in my neck....this is my very favorite. I haven't been able to do that without a piece of plastic in the way....since Joel was 4 days old. It was the first thing I loved when I took his trach out. I got to have our bodies close to each other, for the first time in almost a year. I get to feel my baby breathing on my neck.

I'm overflowing with thanks. And emotion. And love for this past year, and all that this next year holds. I'm overflowing.

Trach Removal

video


Thank you, Trina for getting this on video for us!!!  I will cherish it forever.

Friday, March 25, 2011

Worried. Moms worry.

-Is he ready for this?
-Am I pushing him too hard?
-Am I setting him up for failure by doing this in Spring?
-Is Logan going to get us sick?
-Is he going to catch something just by being in the hospital during cold/flu season
-Are they going to give him a fair shot?

Joel's sats are hangin' out at 92 tonight.  Logan was here for Spring Break (Oregon's was this week,) and this afternoon- starts throwing up.  So we drove him (Adam drove him) back to Oregon.  Two days early.  And I feel awful, because Adam didn't seem to think it was that big of a deal?  So I pushed it.  I don't want this surgery to go awry because of me knowingly exposing him to something...and why am I the only person that seems to get what happens when a respiratory baby gets sick?  It's inconvenient.  Living in different states from a child is difficult.  I hate it.  It's not fair to Logan, and it's not fair to Hannah and Dave, and it's not fair to us, and it's not fair to Connor because he's constantly crying over missing his brother.  I feel like a crappy step-mom making him leave.  But what else was I supposed to do?  *Please pay no attention to run-on sentences, or thoughts that don't quite run into another thought.*  I'm tired.  And stressed.  And emotional.

What if this doesn't work out....I keep telling myself that I want this in God's timing, but I just keep getting flashbacks of getting my hopes up 9 months ago, sitting by his bedside, thinking all would be well when it actually wasn't...is that what I'm doing now?  I don't want to come home with an emergency bag, and a suction machine, and nursing.....I don't want to.  I want to come home and plan out how we're going to re-arrange my family room, because I've done it a hundred times in my head.

And what's with these low sats lately?

Thursday, March 24, 2011

Calling super cute blond IV therapy/sedation girl!

Hey Angie, (hoping you read this :)

Joel had an allergic reaction to one of the products used for his IV placement last week.  I need the name of the product similar to rubber cement that you rubbed onto his skin to make the tape stick to him?  It was stinky?  Want to make sure to get the name before he gets an IV next Tues.  Thanks!  If you're around next week, come say hi!

Wednesday, March 23, 2011

6 days

It's 6 days.  My son's trach is coming out in 6 days.  I'm so nervous and in knots that I can't even think straight.  It's hard for me to imagine things being ok and working out like they're supposed to.

Tuesday, March 22, 2011

Just the Six of Us

It's Logan's spring break, and Tuesday/Wednesdays are Adam's days off.  Since it's the only two days that we get to spend as a family during his week vacation, and it wasn't raining....I let Connor skip school today. :)  It was worth it for us to get out together and make some memories.  Even if it was 20 minutes away.

The morning started out very similar to a Sunday morning.  Me, struggling to get everyone ready, while Adam plays around with the kids...  My husband has a billion great attributes.  Helping me get kids out the door is not one of his best talents. :)  It was a nightmare.  Mia's doing this new whining thing that drives me up the walls.  Joel's cutting 2 teeth, (cut 3 already in the last week, are we done yet with teething??!)  Connor fought with me over every little thing I picked out for him to wear, and Logan was in la-la land, "forgetting" to bring his hat and jacket- for the 9,000,000th time.  Somehow, we made it on the freeway.  Somehow.  And I'm so glad that we did.  Because there's something about physically getting on the freeway that calms me down....."It's ok, we're on the road.  We're on our way..."

We trekked around Tumwater Falls for the first time as a family.  It was so much fun.  A little scary for a minute, we decided not to take the emergency bag with us, and then Joel lost his HME halfway through, and I had to race back to the car to get the bag.  Bad choice.  Note to self: Just man-up and carry the extra bag next time. 

(SIDE NOTE:  We carry an emergency bag with us everywhere we go.  It has things like an extra trach, HME's, suction catheters, an Ambu-bag...  And an HME is the filter that hooks onto the end of Joel's trach.  It traps moisture and dust particles, which he needs because his air goes directly to his lungs instead of being filtered by a nose or mouth.  Outdoor air, and cold air at that, could be dangerous to his respiratory health without an HME.)

We made memories today.  For free.  We ate a sack lunch at the park, and some nice trail walking ladies took a few pics of us. Enjoy!




Waitin' on a Call

Last Saturday we had our "pre-opish" appointment with Boseley, the ENT doc who put in Joel's trach.  The plan was to meet with him to discuss exactly what was to be done with Joel's scar tissue, and when.  The DVD of Joel's broncoscopy didn't play in the computer, or his office, so we still don't know exactly what will be done during surgery.  This is what we DO know:

-Joel will be having some sort of surgery, and soon.  We told him our goal was April 15th, but he's busy during the middle of the month and will be out of state.  He gave us the option of having surgery the first week in April, or the first week in May.  After lots of prayer, consideration, and advice, we've decided to go with April.  Joel has to be on antibiotics until his trach is out, and at this point, we feel that the trach is doing more harm than good.  He's been off the ventilator for months, and never needed oxygen even when he was sick.  I think one month isn't going to make a difference.
-If things go as planned, Joel will get his trach out during the surgery, and extubated the following day.
-There are most likely 2 options for surgery.  Option #1 involves going in through Joel's mouth.  Cutting out the scar tissue, and closing the stoma with a bandage.  This is the option we're hoping for.  In the case that Joel has major complications or gets seriously ill, re-traching him won't be a big issue.  It takes about a month for the stoma to close by itself.  Option #2 is more complicated...and scary for me, but apparently it's described worse than it actually is.  Going through the stoma after cutting around it, they cut the trachea to open it up, and if it's bad in there...they take a sliver of cartilage from the (esophagus?) and hold the trachea open, stabilizing it with sutures.  Details on this are a little sketchy, because I think I was too freaked to actually absorb all the info tossed my way.  The end of surgery 2 has the stoma being sutured shut.  Re-traching would be more difficult.
-Dr. Boseley's office should be calling us today or tomorrow to set up the appointment for the first week in April.  (We hope.)


Waiting areas are SO fun!
 So there it is.  There's still a lot we don't know.  We don't know what is on that video, or how bad the scar tissue is.  We don't know which surgery Joel will be having, or if there are any additional airway problems that he's seen.  Please keep Joel in your prayers, and I'll be sure to keep you updated when we get that phone call!

Thursday, March 17, 2011

Lucky Mama

I will never forget St. Patrick's Day 2010 as long as I live.  We prepared as best as we could for Joel's surgery.  We prayed for speedy recovery, we prayed for the doctors, we prayed for the 95% success rate to belong to us too.  The night before, I slept in Joel's fish bowl room with him...and as I held him nuzzled in my neck his heart stopped beating.  Bonnie rushed in, quickly swooped him into her arms, while she "woke" him back up....I didn't dare hold him again after that. If I had known I wouldn't be holding him for another three weeks, I would have picked him right back up.

During Joel's six hours in the OR, Adam and I went back to the Treehouse.  We went for walks, we laid in bed.  Showered.  Fiddled with my makeup, staring blankly into the mirror, wondering how I'd make myself look normal.  We attempted to put together a puzzle in the common area.  I remember the two of us....a thousand puzzle pieces scattered in front of our faces, and we just looked at the table, eyes glazed over.  How could we possibly manage to match puzzle pieces together?  It was hard enough to just BE.

Dr. Woods called us on my cell at every check point, giving us updates, and when he wasn't, I was checking my phone.  Looking.  Waiting.  And then we got the call.  He was finished; surgery went "like clockwork."  We prepared as best as we could to see our son like he was, and we had all faith that we would be back home in just a short week. 

We went out for dinner that night at the Engine House #9, not remembering that it would be St. Patrick's Day....at a pub.  We split a pint, and I had fish and chips, and we were surrounded by the celebrating public.  Green as far as our eyes could see.  Adam and I looked at each other, and smiled, knowing that we had more reason to celebrate than anyone in that whole restaurant.  And countless surgeries later, we still do. <3

Tuesday, March 15, 2011

...and then there's one from today.

The bronch came and went as scheduled.  And as expected, Joel's trach did not come out this morning.  Which was fine by me.  It's March.  I had 6 people unable to come to Joel's birthday party because they were sick....obviously it's not optimal timing to remove a trach.  Originally back in September, I don't think I understood completely what happens when Joel gets sick, because until that time he hadn't...but it really sets him back in all areas of developmental progress, and his respiratory status gets dramatically affected with any sign of any kind of sickness.  Let's play it smart. 

Joel had another bronch in early January, because of some blood in his secretions.  It was just to look around and see how things were going, fairly routine to do one after 6 months anyway.  Dr. Ricker had found a small amount of scar tissue right above his trach at that time.  He said he was fairly confident that Joel wouldn't need surgery to get his trach removed, (meaning that the scar tissue was small enough that it wouldn't be occluding his airway without the trach in place.) 

But somehow, within just two months, Joel's scar tissue has increased to a size that blocks his airway.  Today, his trach was removed for a short period of time, just to see how he could breathe with it out.  His sats immediately dropped to 92 with an oxygen blow-by, and work of breathing was pretty rough.  I'm stumped.  We're so careful about how we suction him and his care in general.  We have a good team here.  I micro-manage every detail of his rehabilitation towards normal.  Even in my sleep.  (For real.)  So how did this happen?  Why?  I'm all-for having Joel's trach out in God's timing, and not mine.  I do.  I just wish it didn't involve my son being messed with again.  I think he's had enough for a lifetime.

Thanks to a certain super-cool someone who got us surgery as soon as this Saturday, we will be getting started on Joel's occluded airway.  Once that heals, I guess we start with plan #2.  Until then, here are a few prayer requests....'cause we SO need prayer.

-Joel's surgery needs to go smoothly, with no damage done to his vocal cords or airway.
-Quick recovery
-For our family to stay healthy
-A continued strong bond between Adam and I.

Thanks for reading, and praying, and thinking of our little man and his family.  Goodnight.  XO

A few from J's Birthday :)










Sunday, March 13, 2011

One year ago today, I was sitting in a hospital bed.  Alone and scared.  Our child had been transported in the middle of the night to Tacoma.  The last moments spent with him were in prayer, when Adam and I laid hands on him.  We had no idea what was wrong with him, whether he'd be ok, whether we'd ever see him alive again.  Sitting in a birthing ward without a baby is a pretty terrible place to be.

And now, a year later.  Celebrating victory.
We had a great time.  There was cotton candy, and enough circus themed goodies to feed the entire town.  We laughed and joked, and smashed the crap out of a creepy clown pinata!  I've tried uploading a few pics, but my uploader isn't cooperating.  Use your imagination, or check facebook. :)  We have so many reasons to celebrate.  So many amazing things have happened in the last year for us to be thankful for.  Joel, you are the definition of a fighter.  And you are ONE!

Tuesday, March 8, 2011

Baxtrom Appt, 3/8

Saw Dr. Baxtrom today for Joel's vision appt.  Looks like things are still progressing in a positive direction.  The dark room idea isn't working how we'd like it to, and I was afraid we had reached somewhat of a plateau.  It's hard to see improvement when you're watching as close as I am, but I was a little worried this morning.  We increased the bi-nasals a bit so that he can't "cheat" so much, and immediately saw results.  We changed the exercises to include slow snake-like movements, allowing each eye to switch from one to the other to focus on something in front of him.  Plus, he got a new pair of glasses.  Gray.  And so cute. :)

Monday, March 7, 2011

Wonderful Women

Our family has been abundantly blessed with great health care workers for Joel.  We couldn't have come as far as we have if it weren't for special individuals with a heart for children.  Joel gets three in-home therapies a week, and two that we see once a month.  The beautiful ladies you see above, I love with all of my guts.  They come every week, rain or shine, and help Joel build strength and coordination.  They have made a point to built lasting relationships with our entire family.  They mourn with us when things don't go as planned, and they celebrate in our victories with us too.  They have given me their shoulders to cry on, and hugs when I need them most.  I can't imagine our lives without these magnificent women.  God has qualified the called, and these women are no exception.  I am so thankful for your never ending encouragement and support.  Suzanne, Dee, and Cathy, I LOVE YOU.  You make a positive difference in the lives of others.

Thursday, March 3, 2011

"CLEAN IT UUUUUUPPPPPPP!"



I'm a terrible housekeeper.  I'm not very tidy, and even if I'm trying to clean house, I am leaving messes behind me the entire time...what should take me a half hour, takes me close to 2....  I desperately want to get better about this, and there's no doubt that my kids are following in my footsteps.  It doesn't help that having a nurse around is very similar to having a friend over....every day....for 8 hours a day....FOR 9 MONTHS.  So, with day nursing being cut, I've made it a goal to spend more time upstairs.  I have a couch that has collected all of our clean laundry.  It sits in the upstairs common area, and my laundry time is now going to be kid-clean-up time.  Two of the things I neglect the most will hopefully be resolved here soon, if I can stay disciplined enough.  TIME TO CLEAN UP!

Wednesday, March 2, 2011

You can shove Chuck-E-Cheese up your butt.

I will never forget an encounter that I had with a nurse while we were staying in the hospital oh-so-long-ago.  Joel was about 2 months old, and we were working on his wean off of the ventilator.  Now, I knew this night nurse was a Christian because of previous conversations I'd had with her.  She wasn't one of my favorites, but she was competent, and it's always nice to feel comfortable talking with someone about our situation from a Christian perspective and not feel like I'm "preaching" to them.  I hate feeling preached at.

During this chat, I shared with her our financial experience, and told her something I tell lots of people.  "My son is going to be fully healed and normal."  And her reply was something along the lines of: "My brother is really social, but slow.  He can't add 2 plus 2, but he works at Chuck-E-Cheese, and is very happy."

Now if I could have slapped that woman and gotten away with it, I probably would have.  But I didn't.  I gritted my teeth, and told myself that one day, Joel WOULD be healed, and he WOULD be normal....(and that she was an idiot for saying something like that do a worn-down mother.)

And here we are people, it's less than 2 weeks until my little pumpkin turns ONE, and would you like some proof that I was right????  Of course you do.

-Joel claps when he does something good, or he's proud of himself.
-He can hold a toy in each hand independently
-He acts shy when someone new says hi to him.
-He has separation anxiety when I leave the room, or during shift change...which is VERY normal for our family if you happened to know Mia as a baby
-He can sit up
-He can say da-da.....(working on mama, or is that just me? ;)
-He shakes his head NO.  For lots of things, and especially if you tell him to cough or "go ni-nite"
-He has recall-recognition.  If he knows he got hurt the last time he attempted it, he has hesitation to do it again.
-He cries the second his OT, PT's walk in our front door.  He knows they're going to make him do work!
-He has a great sense of humor, and does things to make us laugh, purposefully
-He wants to eat everything on our plates, even though he isn't ready to be eating like a big kid yet.
-He's walking with support.

Is that enough proof for you that my son is doing things that other normal babies are doing?  I think so.  I just have one more thing to say.  Nurse Winona, you can shove Chuck-E-Cheese up your butt.

Tuesday, March 1, 2011

Best Case Scenario.

Ok, so if one were to judge the entire day by the first two hours of my day, it would be terrible.  I didn't sleep well last night, as always, we were late leaving the house (I HATE BEING LATE!), and then our car got stuck in 4-wheel drive.

The day didn't go like the morning did.  Dr. Ricker was very pleased at Joel's weight gain (19lbs, 15oz!!), sats were decent, and he then he plugged Joel's trach with his thumb to see how he could take breaths in through his mouth.  And he did wonderful. :)  He wasn't happy about having his trach plugged, but I don't think I would be either!  So, plans have been made to prepare for Joel's trach removal.  On March 15th, Joel will have his second broncoscopy.  They will look again at his airway for scar tissue, remove the trach, and see how he breathes without it.  There is a possibility on that day...........that he could get his trach out.  Now, it's only March.  Which was my original goal.  But it's only March.  Cold/flu season is definitely in it's "element" right now, and I'm getting a little nervous.  I know Dr. Ricker plays it safe.  But the thought...the possibility, has me getting my hopes up.

This is what I ask of you.  If you are the praying-type, these are the things we need prayer for right now:

-Wisdom for Joel's doctors.

-Continued good health for Joel and our family

-That if Joel's trach is taken out on March 15th, that it is because it is ready to come out.  We don't want to re-trach.

-Strength, endurance and peace for our family in this time of transition, especially for Logan, Connor, and Mia.  They feel our stress more than we do.

-Jobs for our nurses when our case ends.

Thank you for all of your continued support, good thoughts, and prayers.  I love you.