Saturday, December 9, 2017

A GREAT check-up!

Koal had a great check-up yesterday with Dr. Shah, our amazing cardiologist here in KC!  His pressures and numbers looks great, and doc assured us that Koalton's heart function still looks fantastic. Dr. Shah is so pleased with how the repair from our Boston trip is holding up and looking exactly as it should!  Continual monitoring of his little heart's rhythm, leakage and pressures will continue as he grows, but doc was so pleased with his stability he said we don't need to return for an ENTIRE YEAR! Waaaaaaaahhhhoooooooo!! (This is, of course, the LONGEST we have ever had between appointments, so what a blessing and praise to get such a great report!) 

Being silly as always!

Koalton continues to grow into an incredibly sweet, smart little man.  He won a citizenship award for empathy at school last month, and he's having a great year overall in his classes! First grade: speaking French, winning awards and doing AWESOME!

Love your heart, little guy!

One more pic to share...a Schieber Halloween shot:  Adry (8) as Spiderman, Aily (4) a unicorn, Kade (9) is the Hulk,  Koalton (6) as Ironman (from Ironman 2, or something?!?!) and little Bunny Auvy (22-ish months) in front. 

Thank you for your continued prayers and support for our little man (and all of us)! We are SO grateful for such a fantastic check-up and continue to thank God every day for His abundant blessings.  Each day that passes is such a gift with Koalton doing so well and thriving in ways we weren't sure we'd ever see. Thank you, as always, for praying with us and standing along side us through the ups and downs of this journey. 

We proclaim how great you are 
and tell of the wonderful things you have done.

Psalm 75:1

Monday, July 4, 2016

We're out!

Koal was discharged from the hospital earlier today! Waaahhhhooooooo! He's doing great and everything looked good after his chest x-ray this morning, so they sent us on our way! We are so thankful to be out, and Koal is excited to be headed home soon. It's still so amazing that his surgery was less than a week ago, and here he is feeling great and stable enough to be released from the hospital and fly thousands of miles home in the next day or two!

Yesterday, July 3rd, this little nugget turned 6 months old!  Half a stinkin' year!! And what a JOY she is to us!

She's been AMAZING on this trip and most days completely upstaged the patient Koal at the hospital! Haha! Those doctors and nurses love little monkeys like her and she ate up all that attention!!  At one point in the hospital after Koal had his vitals taken and had to take some medicine, he was pretty sad, and in a quiet, sweet little voice, he said to me, "I just want Auvy to come and make me smile." was adorable...and she REALLY did make him so happy SO many times on this trip. Thank God for little sisters who make us smile.

Your continued prayers are so very appreciated! We will follow up with both Koal's pediatrician and cardiologist in the next couple of weeks once we are back in Kansas City.  His recovery has gone so well thus far and we continue to pray that his scar will heal well will no infections, his chest bone will heal completely with little pain and that he continues to regain energy back as he heals. We will continue to update as he recovers!

Sunday, July 3, 2016

Day 5 Post-Op

I don't even have a picture for today but rest assured there was lots of bike riding through the hospital and multiple trips to the garden! Koal is still doing fantastic (good lab values and fluid on chest almost completely gone), and we are still on track for discharge tomorrow! He will have another chest x-ray in the morning and possibly more blood work, and hopefully we'll be cleared to blow this pop stand! No word on follow up yet, but it is INCREDIBLE to think Koal had open heart surgery less than a week ago and we may be out of the hospital tomorrow!!

Thank you for your continued prayers through all of this. God has blessed us in incredible ways!

Saturday, July 2, 2016

Day 4 Post-Op

So thankful to say it was another GREAT day for Koal today! This morning he got his pacing wires out, had a IV removed and had an echo. All of his chest bandages were removed when they took out the wires, and his incision site and sutures from the chest tubes all look great.

Koalton was such a trooper for all the procedures, and he earned himself a mini Rubik's Cube and another afternoon of riding the bike around the hospital halls and out in the garden. His appetite continues to increase and he's even becoming better and better at taking all those pain meds they give him.  He and the nurses have quite a system down to get a quick drink of water between every little sip of the meds.

Tomorrow will be another chest x-ray to check the fluid around his lungs, and probably more blood work to make sure all levels are stable there. Our nurse practitioner actually talked about possible discharge for us Monday!!! YAAAAAHOOOOOO!! It just doesn't seem possible that less than a week after open heart surgery out little guy could be ready to go home!! We know any little tiny single thing could throw us off, and we trust that God's timing is perfect for Koal's discharge (and EVERYTHING through this journey), but we are hopeful and excited that the time could be near!

THANK YOU, again, for your continued thoughts and prayers. Pray that Koalton has another great day tomorrow, feeling better and better as the time passes, and that all tests would show great results so that nothing would slow us down from bidding farewell to this lovely medical establishment!

Throwing pennies in the fountain!

Friday, July 1, 2016

Day 3 Post-Op

Another great day for sweet Koal today!  We played in the playroom, rode a bike around the hall and even went outside for a bit. He's also had a big increase in appetite and used the restroom A LOT! The Miralax finally paid off! Haha!

Koal had a morning x-ray that showed a small amount of fluid around his lungs that is thankfully slowly decreasing. He also had a lung scan that showed blood flow is back to being equal to both the right and left lung. What a praise! Because of the fluid, Koalton has been on a large dose of diuretic, causing him to need to use the bathroom ALL THE TIME.  It will help decrease the fluid around his lungs, but sadly keeps us up at night with so many bathroom breaks. Koal's potassium was also a bit low after labs today, so he's been put on a supplement dose of that as well. By the afternoon labs, things looked better with that level, so tomorrow the plan is to take out the pacing wires and do another echo if all levels remain normal.

X-ray time!

Our little buddy seems to be feeling better and better every day. While still sore and sometimes apprehensive of getting on and off his bed, his transitions have become easier and less painful, and we know that will continue. THANK YOU for your continued prayers for his recovery.  God has wrapped his arms around us and we feel and see his work in Koal's recovery every day.

Thursday, June 30, 2016

Day 2 Post-Op

Koalton had a really good (and very busy!) 2nd day post-op!  We had some tears (still so hard to transition out of and into bed!) but MORE laughs and smiles, so that's the best! We started the day with a chest x-ray, which he walked to the elevators for, and then strolled down stairs with dad. When they returned, Koal got on the bike from the play room and rode and rode and rode!! He rode laps around the floor, then we got to go out to the hospital garden and ride some more!  He rested after lunch for a few hours (yes, he rode and played for hours this morning!), and then got up to ride more and have some fun in the playroom.  We played Cootie and bowled and played with cars and their race track...we even played with a kitty keyboard for a bit.  Then, he rode some more! By evening he was exhausted, and I think the day was beginning to catch up with him.  He watched some cartoons and was pretty weepy about "feeling itchy" (probably from Fruit Loop crumbs from earlier in the day!) and a bit agitated and wanting to go home.  Poor little buddy.  Please pray that tonight is an incredibly RESTFUL night for him, so that tomorrow's tests and activities go well.  Another x-ray and lung scan are scheduled, and he'll also have an echo to make sure all is well with his heart after the surgery. Pray that those results are excellent and insightful for our team here.  Please pray also that Koalton's pain will resolve itself and that his fear of moving in and out of bed and trying to use the bathroom would subside. He is being SO strong and so brave, and I just want him to be able to feel safe and content and patient as he continues to heal.

Let them give thanks to the Lord for his unfailing love and his wonderful deeds for mankind

Psalm 107:15

Wednesday, June 29, 2016

Day 1 Post-Op #2

Not much new to report tonight...which is great! We got all settled in to 8 East the cardiac floor here at Boston Children's Hospital. Koal rested well most of the afternoon and got up a couple times to go to the bathroom. Pain management is still a top priority for our little guy and for the most part he's had a really good day. Getting up to get out of bed is pretty hard on him (think broken sternum and chest tube holes!) and he has gotten quite worked up leading into that a couple times. Please pray that God would calm his fears and give him strength to do the hard stuff we know can hurt a little bit. Pray for wisdom for the doctors, nurses and me and Adam as we help him with his pain and meds that combat that for him. Pray that tomorrow could be a great day of rest and fun, being able to easily get up and walk around the floor to the playroom and the outside garden.

It's hard to watch our sweet baby hurt...we are SO thankful for such an amazing medical team here that knows just what to do to ease his pain and promote steady recovery. I thank God every day for modern medicine and how He miraculously uses that to give Koalton a future with us. We pray that He is glorified through all of this.