Thursday, July 23, 2015

Where Do We Go From Here?

My mind is overwhelmed, so bear with me while my fingers melt into the keys as I update on the latest.

June 6th-ish: Local ER. Told respiratory virus. Told fluid in lungs on Xray. Sent home to wait virus out.

June 13th. One point five weeks later landed in KC at the hospital. Fluid wasn't from a virus of any kind. It was fluid from her heart. In other words, showing signs she NEEDS this next heart surgery.

Admitted on the 13th, sent home on 1/2-liter oxygen and new meds, new GJ tube, and with the knowledge {finally} that there's no trach ring. Busted out on the 17th of July. Goal to rest until open heart surgery on the 13th of August. Holidays while in hospital totaled two: Father's day and Fourth of July. Sometimes we measure stays in terms of how many holidays we hit. Her NICU stay included May Day, Mother's Day, Memorial Day, Father's Day, Flag Day, Fourth of July, First Day of School, Labor Day and all this started less than one week after Easter.

We were home 5 days. Almost. Not quite. Flew back (literally, Chloe was air transported again. She loves that transport team) again to KC, this time for low sats. No other reason-just randomly low sats. Went from half liter to 3 liters of oxygen in less than 3 hours. More than 1 L is high for her. Took her to local ER again and waited on CMH transport team. Followed the ambulance on the route back to our house and had that amazingly awkward gut wrenching moment when you turn your car toward home to finish packing up and get to KC while your child goes off with trained strangers, heading up the hill and around the curve and on their way to the plane. This never gets easy. Or normal. Or routine. And yet...we knew the routine down flat. 

Got to KC and tested positive for...


Seriously folks, when we say we gotta keep her healthy, this is why. When we say we gotta hunker down during cold and flu season and we post article after statistic after breaking news on the above-mentioned diagnosis and possibly even offend people at the heightened state of alert for germs, this is why.  A common cold can land her in the PICU. That's Pediatric Intensive Care Unit. That's intense. From a cold.

So now where do we go from here?
...She needs this Glenn {{heart surgery}}. She was scheduled for 3 weeks from now and needed to be healthy for 2 weeks prior.
          >>Forget that idea!!<<

...She now needs to wait 4-6 weeks from the moment she's symptom-free before surgery.

But the question is where?
Where do we wait this out??

Anyone a fan of the infamous Pro//Con list? Here we go:

PROS to STAYING              //            CONS to STAYING
Pro: We're on top of everything. Any meds, any cough, any rashed bum, any change in secretions, any questions asked. Answered. Taken care of. She'd be 100% watched until surgery.
Con: Risk of infection just from being here alone, much less if she has to have lab pokes. 
Pro: We don't stress her out with back and forth travel. Rested up for surgery.
Con: Risk of picking up another bug. 
Pro: We get some rest before the big surgery. 
Con: If we're here that long, they might do another PICC line. 

PROS to HOME           //          CONS to HOME
Pro: We're home, she rests in her own environment. 
Cons: We're her nurses for 3+ night and day shifts and exhaustion has hit. 
Pro: No pokes. No PICC lines. No stressful sedated procedures. 
Cons: Risk of germ bugs at home and thus pushing back surgery even more. 
Pros: We're home as a family. We're together and not cooped up in a 10x10 room. 
Con: We're not getting sleep at home. 
Pro: She relaxes better at home.
Con: Stress of travel to and from. Possibly fly her back if she suddenly gets sick. Really watching for the shunt to make sure it doesn't clot off or stop working since it's so small. 

There's simply so many things to weigh into consideration. We've been here 5 weeks now, with the exception of that long weekend we went home then turned around and flew back. Surgery will be 4-6 weeks out from the day she's symptom-free of this cold. In other words, could be 4-6 weeks until surgery followed by another 4 weeks recovery. A.K. A. a LONG time to be in the hospital. 

So we pray. We wait for her to get back to her baseline 1/2 liter. We ask questions of the team to gain the best understanding of plan and direction. We remember that Jesus didn't have anywhere to lay His head, and His Father provided for Him, and we trust He'll grant us wisdom to know where to lay our head at night. We trust that although we cannot see, touch, breathe in, know His plan in all of this that He does have a plan in all of this. 

Please pray with us and for us while we wait and see where we go from here and how soon we can get her surgery rescheduled for, that she'd heal up from this cold and stay healthy here on out.

Saturday, July 11, 2015

Another Chloe Update

{ This chic can rock a hospital gown.}

Last week we attempted to take out Chloe's G-tube called a Mic-Key, and put in a GJ tube {aka goes into intestine}. The idea being that since Chloe's fundo is blown//no longer exists, that we'd bypass stomach and feed into her intestine to lower puking episodes {...sorry, gross post warning...might want to finish eating first...}. We took her down to have it placed, and unfortunately it didn't take because the guide wire wouldn't go into her intestine. One of the nurses that helped said it was like they were hitting a brick wall. It didn't make sense though considering that when dye//contrast was shown on imaging it going through intestines, and she's still making diapers, so there's no real blockage. Chloe continues to throw us curve balls. She likes baseball season. We need to get her some KC Royals clothes.

That was Thursday.

On Friday, we tried again. No such luck. Same as before.

We all decided that either going back to original Mic-Key button was best idea, and get her eating again this way even if it meant going down on feeds. But then they said, "You know, if there's something going on though, we really need to know what's up with the intestines and do an upper GI scope." We were at first stressed about stressing her out with more sedation, but it's no more invasive than what they did last week, so we agreed, but it'd have to wait till Monday. After phone calls half way home where they almost had us turn around and come back so they could do it on Friday, we decided it's best to wait till this coming week and not stress her out anymore. She already threw up blood on Thursday during the procedure and on Friday, and got pretty upset during those episodes. She needed to rest, and as her parents, we pushed for this.

So we head back tomorrow, and hope that early this week we can get that GI scope done, that they do not find narrowing of the intestine, no blockage, and they can advance the J portion of the tube into the intestine. We pray they can get feeds going again and that she'll FINALLY feel better tummy-wise.

It's been a whirlwind of a week, and an emotional roller coaster.

The good news of the week is that her heart surgeon thinks Sildenafil {drug used to relax heart and lungs} is working. The good news is that for healthy child, this surgeon gives 5% risk of complication. For Chloe, he's giving 10% chance, not 40-50% like we thought he meant. We've feeling more confident to bring her home this week since she's almost back to baseline, and soak up the snuggles and let her rest until August 10th, surgery date.

Thank you all for reading, encouraging, prayer, and helping us through this crazy last month. Please pray in coming days that she can get this test, and that she comes off sedation well without requiring another PICU stay.
Friday, July 3, 2015

Summer in the City

Our summer home. KC. Kansas City. I'm not a city girl. We're not a city family. But this place is growing in our hearts because it's home to the amazing Children's Mercy Hospital & Clinics. Our beacon of hope and healing for Chloe. 

She got a PICC line place a few days ago. That was kind of our weight that tipped the scale towards stay here. That, and needing close to two liters of oxygen nearly all the time, means for now, we're staying put and waiting to get on the heart surgery schedule. Current plan is to continue to work on increasing feeds s l o w l y  but   s u r e l y  as tolerated. To hope to stay low on oxygen, but of course give what is needed. At times she's needed more oxygen, other times can wean to room air for a couple of hours. She's stopped throwing us as many curve balls these last few days, and is feeling much better. She's on a new medicine that's {hopefully} relaxing her heart and lungs because her heart is so tight//tense//won't relax, and this drug is mainly used after the heart surgery for kiddos whose hearts won't relax during healing. For Chloe we're trying this up front before the surgery, and so far so good. We're keeping a VERY close eye on her blood pressure as this drug can lower it, and she's already on a bp med to keep bp lower, so watching this like a hawk. The tentative plan is for the heart surgeon to swing by and take a look at her sometime next week and then decide how soon {or later?} she needs this shunt replaced and can get scheduled...or another question is how long do we let her relax on this drug before replacing the shunt. 

In other words: We wait. 

We be still. {Psalm 46:10}
We stay put and let Him lead. {Proverbs 3:5-6}
We watch and pray. {1 Thessalonians 5:16-18}
We trust that God has a plan in this and we learn to wait for His precious and perfect timing. {Isaiah 55:8}

Oh, and we snuggle. She's feeling good enough to hold again, and I got to rock and cuddle last night for over two hours straight! {Though there was a lot of suctioning while in Mama's arms}. 

What does waiting look like?

It looks like Daddy working by her bedside during the day, helping to suction, talk with docs during rounds, and giving input on things like if we think she could benefit from an albuterol treatment or help decide if she's in any pain, or to talk through game plans. 

It looks like me and the kiddos spending daytimes with friends in the city who used to live in our hometown and are loving the opportunity for our kiddos to play together and to catch up on life. It's a brief escape for fresh air and stress free living, though Chloe is a heartbeat and thought away at all times. 

It's family dinners in the Ronald McDonald house, then bedtimes with Daddy while I take night shift with Chloe, helping to give bath and do trach care and tuck her in for the night. 

It's learning to balance time by Chloe with family time as the four of us. It's learning to parent, to balance work and lives and bedside. It's homeschooling from the hospital room and a few family outings. 

Like this one. 

He leads us beside still waters. Not the Lord in this case, well, kind of...but our son. We went off the beaten path today and found a nature walk/hike out from the city a bit. We parked, hopped out, started on our trek down to the nature center so Mommy could use the restroom first, only to find that it was closed for the Fourth. If only I hadn't had that Diet Coke on the way!! We found the restrooms just outside...but they were locked. And the lizard that scurried under the door made me not exactly excited to go waters in that particular restroom, but it didn't matter...because it was locked. 

At the beginning of our walk. As you can tell, those are thrilled kids there. And my thumbs down was because the Daddy was making us go walk and yet I STILL hadn't found a restroom. Held some high hopes for an out house...

Our fearless leader. Seriously. He was awesome. We learned about maps, legends, what a compass is. He was great! {Note to self: Check off today as school day: science and social studies}. For real though, part of this crazy summer is all about parenting these littles through so much that not many littles experience by this age. Poor dude has been in a funk the last few days, cranky, learning his world is not the only one and us having to have many heart to hearts. But today was different. He was awesome. He was fun and happy and led us and was not scared of anything. We were proud of the leader that came out in him today. 

"OK guys. Now. This map says there are wolves, spiders, snakes, and mountain lions. It's OK though. They'll just jump out and scare us. Then bite us. Then eat us. Then roar." 

Other fun one liners:

"Don't look guys, Mommy's going waters in the woods."

"Spider web!"

"Tree! Duck!!"

"Isaac, slow down!"

"I can hear civilization." {The highway was just around the river bend and we could hear the cars rushing by}. 

"I'm going to my happy place and getting a frappucino after this. And Icee's. You guys want Icee's? I need air." {Normally I love nature more than anyone in the family, but something about the mud and the spider webs and the glistening on my skin and the fact that I didn't wear the right shoes because I didn't know we'd end up on the Oregon Trail today...when I had in mind a nice WWI Memorial the whole family would enjoy...}

"Oh look, another creek to cross."

"Slow up there, Clark!"
"My name isn't Clark, it's Isaac!"
"Yes, but today you're an explorer, so you'll be known as Clark." {Explains what explorers are and who Lewis and Clark are}. 
"No. It's ISAAC."
"OK, Lewis."

"You guys enjoy your snack. I'll just stand here on the path where I can see the snakes coming."

"Isaac, SLOW DOWN!"

"I miss Chloe."
"Me too."
"I can't wail till the day we can bring her along on these adventures."

"Isn't this fun!!!"--the Daddy
"Spider web!!"--the Mommy

"OK buddy, you have a choice to make. The trail can either end here, and we can go get fresh, cold, delicious Icee's. Icee. Icee. Icee. Think Icees. Or we can go that way for another mile."
"We can be done. Let's go get Icee's."
"Good choice, son."

I think Abi was the least amused by the day. And we were covered in mud by this point. So we went to Target to buy $2 flip flops for the whole family so we wouldn't track in fresh mud all over the beautiful new Ronald McDonald House. As payment for leading us all astray into the woods, Alan will be scraping all the mud off our shoes this weekend. 

I think the heat got to him. He seemed to think this hat looked good. 

We took a pic in our flip flops when we got done. We added Chloe's shoes so she could be in the picture with us, even though she was in her room at CMH napping and harassing her nurses. She's a part of this family every single moment. We think of her Every. Single. Moment. when we're away. She can't get rid of us that easily ;). We're in this as a family. And one day, we hope she can join us on another fun hiking adventure. We're patiently waiting for heart surgery, and the hope that it will enable our baby girl to thrive. 

Oh, and the little girl in the pic above, she was doing the need to go waters!!! dance. We had one shot for this pic before she bolted for the restroom before she watered nature like her mama had to do. 

Will be getting this memory on a canvas to put above our mantel each summer season. 

{"Hun, can you look at my neck? It feels weird..."}
{"Oh yeah, you have like fifteen bug bites all in one little area. It's like a bug got stuck in your shirt today."}
Seriously. Next time I'm not letting him choose the place unless we're fully prepared with bug spray, old shoes, and a few flares. 

Prayer Requests:
--Alan goes home this weekend through next weekend. Please pray for safe travels for him and wisdom for me as I navigate taking care of the kiddos plus time by Chloe. 
--Wisdom for Chloe's doctors as we try to narrow in on a surgery date. 
--For this new heart med to continue to help her feel better and her heart to relax. 
--For His will to be our will. 
--For wisdom and patience in parenting on these long days.