Red Sox fan?

After many prayers, long discussions and a fantastic phone conference with a world renowned surgeon, we have made the decision that Koal will have his next surgery in Boston in about a month. We spoke with Dr. del Nido last week, and we were so impressed with him and all the information he gave us, we had such peace to make the decision to travel to Boston for Koal’s continuing care. The man is AMAZING and seems very confident that the concerns the team has here are not going to be difficult to work through there. He is an expert at the type of surgery our little man needs, and he assured us that he would not recommend something he didn’t believe was for the best, and that he will make decisions as needed during surgery if something is not as we expect once he begins.  I got a call from the scheduler at Children’s Hospital Boston yesterday, and we were hoping to set dates in place, but she said she will call this next week to determine dates for all procedures. Unfortunately she also said it is probably that the earliest we could get in is early December. After speaking with the cardiologist and surgeon we were expecting sometime mid-November for a surgery date, but it seems that may not be the case.  This process for setting the dates for surgery is so bittersweet, as we are thrilled to begin planning for a trip that will save little Koal’s life, and yet my heart aches knowing we will most likely be gone for both Kade’s 4^th birthday AND Christmas. I am so devastated to even think about having to spend those special times away from Kade and Adry. The approximate time for staying in Boston is 3 weeks.  This includes a few days prior to surgery to have an MRI and echocardiogram done, then about 2 weeks in the hospital having and recovering from surgery, followed by 3-4 days in the Boston area before we return home, so doctors can evaluate Koal’s progress and check medication levels, etc. a few days post hospital release. We will have much more information soon about dates and details, but for now we pray for God’s perfect timing with all of it.

Quick update on Koal and the crying and reflux:  Unfortunately, not much better. L  I do think there is some improvement…the crying doesn’t usually go all night, and the daytime drama has decreased some as well, BUT, we are still up nightly, sometimes only for a ½ hour or so, but other times for an hour or more once to twice a night. Poor little dude…and poor tired us! No, we are hanging in there, but we do long for a good night’s rest, and for our sweet little man to feel good enough to sleep peacefully as well.

Again, thank you so much for your continued thoughts and prayers for us.  Here are some specific ways we need prayer at this time:

*For the timing of Koal’s surgery in Boston. Perhaps it is selfish, but I want SO VERY MUCH to be able to be home with Kade and Adry for Christmas, so please pray that the timing will be absolutely perfect and that God will work things out in His perfect plan.

*For insurance approval for the surgery to come through quickly and without issues.

*For the details and planning surrounding the trip to Boston as well. Once we know dates we will have quite a few things to pull together in a few week’s time – plane tickets, housing, transportation issues, kids schedules, finances, and so much more.  Pray for God to go before us and work all things out – every detail – and that He would give us wisdom and peace as we enter into this stage of planning and preparing.

*For Koal’s reflux and crying. Pray that as he grows and develops that his tummy would become less of an issue and that he would return to his great sleeping patterns soon. Pray that he would not be in any pain, and that Adam and I could get some much needed sleep as well. 

Decisions, decisions...

It’s been a bit of a rollercoaster ride of emotions the past week for the Schieber family. After Koal’s heart catheterization last week, the Children’s Mercy cardiac team, as well as teams from Michigan and Boston reviewed the findings and have made recommendations for the next steps of Koal’s care. Unfortunately, not all of the recommendations are the same and we are faced with a choice on how to proceed.  The results of the cath show that Koal’s right ventricle is much smaller than they’d once thought and hoped. It appears as though his tricuspid valve is “straddling,” which basically means it is in an awkward position when it comes to the surgical procedures we were hoping he would be able to have next.  He also has a narrowing in his left pulmonary branch. This is not a huge issue, but just one more thing they will have to correct when they do the next surgery.  Children’s Mercy, as well as the team in Michigan recommend our next step be a Glenn procedure here in the next few weeks. It is a fairly easy procedure (as heart surgeries go) that takes the Superior Vena Cava that brings the blood from the head, arms and upper body back to the heart, and connects it to the Pulmonary artery so it will all go straight to the lungs and not pass through the heart. This helps blood become oxygenated since Koal’s little heart can’t pump blood to the lungs due to the Pulmonary atresia.  The likely next step would be something called a Fontan anatomy, a surgical step in about two years. When CM and then Michigan told us this, we were quite disappointed, as this option was the least desired and optimal of the three we were originally given. Our cardiologist had even said he would not recommend this option unless Koal was not a good candidate for the others (which he may not be), as it is a single ventricle repair and the complications are extensive and quality of life often inferior. Hope, mixed with confusion and turmoil followed a few days later as we spoke to Boston who recommended something more like the options we were hoping for before Koal’s cath. They feel a modified double switch surgery, which is a bi-ventricular repair called a Hemi-Mustard/Bidirectional Glenn/Rastelli procedure would be the best option. (Say THAT three times fast!!  HA!) If you’re a science nerd like us, you might like this link that explains a bit more about this procedure:  http://www.aats.org/annualmeeting/Abstracts/2010/21.html

Basically, this option would be much closer to an anatomically correct repair, and if all goes well initially, long term complications tend to be far fewer and patients generally go much longer before needing a heart transplant. This procedure, however, is an 8 to 9 hour, extremely technically difficult surgery. So, not the “easy” choice either.  We are thrilled this more complete repair is possibly still an option, but know it will be a tough decision either way. We have a phone conference scheduled with the surgeon from Boston to discuss the surgery and what things would look like if we choose to proceed with this. Please pray for clarity and wisdom as we speak with him.  Pray that God would open and close doors as needed and that we would know with complete confidence which option to choose and how to continue with Koal’s care. 

But now, this is what the LORD says…”Do not fear, for I have redeemed you; I have summoned you by name; you are mine.”   Isaiah 43:1

I’ve spent the past couple days chewing on this verse and others like it that command us to not fear. Aside from the expected (though probably not godly) concern that comes with having an extremely sick child, we have found ourselves filled with peace and hope and very little fear throughout this entire journey with Koalton. Our greatest fear is of course losing him, but somehow, amidst that terrible reality we’re faced with daily, we do know that God is good, ALL the time, and that He could be glorified even in something so tragic.  I was challenged by this when we received an anonymous note with this encouragement a few days ago, along with an incredible financial gift. We are extremely humbled and so very grateful…what an amazing blessing!! Thank you, whoever you are, you have richly blessed us.

We continue to ask you to pray for Koal and his crying.  I mentioned last week in a post that things have been getting worse with Koal’s tendency to cry more than ever before lately.  We’ve had over a week of nights where we’re up for hours with him screaming, and days filled with crying for an hour or more at a time, multiple times a day – all with nothing that seems to console him or help him settle.  After another terrible night last night, I took him to see our pediatrician this morning and while thankfully (I think?) she found nothing wrong (no ear infection or strep or anything of that nature), she did prescribe  a new reflux med that we’re hoping will do the trick if it’s his tummy that is making him so upset. Please continue to pray that our little Koal would not be in any pain and that we would be able to return to good nights of rest and peace very soon.  Both Adam and I are exhausted and our hearts ache seeing Koal this way.  Our concern is mostly that he may become more ill or have more severe issues with his tiny heart if he continues to put strain on it with all the crying. Pray for strength and patience for us as well, and that God would heal his little body and give him (and us) rest.

Koal: 5 months...and Adry is TWO!

Little man Koal is 5 months old today…still so hard to believe how fast the time goes! He is laughing like crazy (mostly at his daddy!) and rolls across the room in the blink of an eye.

Koalton is still quite colicky at times, which is no fun – especially at night! It just breaks our heart to see him arch his back and scream and there be nothing we can do to calm him or help him feel better. Talk about tricky and draining when you’re colicky baby is the heart baby that is not supposed to cry. We are praying that within the next month or two (when colic usually clears up in kiddos) things will start to feel better for him reflux wise, and hopefully that will make a difference in the amount of crying.

Along with a 5 month mark for Koal, big sis Adry just turned TWO!

A little blurry...but she sure is cute!

We had a fun little family party and our princess had a great time. Her stats are:

Weight:   27lbs   -- 50^th %

Height:   35 inches – 80^th % (Tall?? Weird!)

Please continue to pray for us as we wait to hear from Boston and process through the recommendations from all hospitals and surgeons concerning the next steps for Koal.