Decisions

Koalton’s cardiology appointment Wednesday morning went very well. We are so thankful to God that He continues to sustain and protect our little man! Koal’s O2 saturation levels are perfect, and his EKG and echocardiogram looked wonderful. His stats from yesterday were:      

Length: 24 ½  inches  -- 35-40%

Weight: 12 lbs  7 oz  -- 15%

EKG time!

  

The doc was a bit concerned about Koal’s slow weight gain (he’s slowly going down percentile wise), but seems to fully understand the genetic factors he has playing against him with rather “small” parents father.  I assured him that Kade was the same was as a baby – by 4 or 6 months had completely dropped off the charts to 0%, but was a fantastic eater (as is Koal)! We also made sure he knew I eat plenty red meat, carbs and fatty foods – especially while nursing!  Dr. Shah told me he knew a surgeon who always tells his nursing mothers, “Your baby has a heart defect…have an ice cream sundae every day!”  J Everyone seems to understand Koal is probably just slowing down in his weight gain due to genetics, not his heart problems or other issues, but pray that he of course grows as he needs to for upcoming surgeries and procedures.

The other major thing we talked about with the doctors Wednesday morning was information they received from other surgeons and hospitals around the country about Koal’s case concerning what they think the best possible management would entail. Surgeons and cardiac teams from Boston and Michigan both seem to agree that a surgery called a “double switch,” or the Senning-Rastelli procedure, would be one of the top options for Koal. Another team from California suggested another “temporary” type fix called the Glenn procedure first, here in the next few months, followed by a more complete repair surgically when Koal is 2 or 3 years old.  This Glenn surgery would not prevent the Senning-Rastelli fix in the future, it just complicates it a bit, and is ANOTHER heart surgery. So, if possible, it would be better to do the “double switch” while Koal is 6-9 months old and save him a surgery and possible complications on a future surgery, if he is a good candidate for the procedure at that time.  Our cardiologist will meet with the surgical team here at Children’s Mercy in the next month to confirm they agree with these management proposals and we will make more decisions after that. This complicated, technical surgery is not offered here at CMH, so unfortunately we will need to travel to Michigan or Boston for this and any other future surgeries (usually between 7-10 years old and then again during late adolescence surgery is needed to replace conduit, as it will not grow with Koal).

We received a lot of information and are very encouraged to hear similar reports and suggestions for future treatments, but we are of course, a bit overwhelmed and heavy-hearted with numerous questions and unknowns as well as so many decisions before us. God continues to give us an overwhelming sense of peace as we walk through this, and we continue to pray, best or worst case scenario, that HE would be glorified in all we do.

For the LORD gives wisdom; from his mouth come knowledge and understanding.

Proverbs 2:6

Here are some specific ways you can be praying for us:

*for comfort and clarity as we process through our options and work with cardiac teams to learn more while seeking God’s leading in what’s next.

*for wisdom and peace as we continue to make specific decisions: who, what, where, how, etc.

*for Koal to remain healthy and growing as he should

3 months

Thank you for your continued prayers and support. We cannot possibly begin to tell you how much we appreciate all of it, and how thankful we are God has blessed us with all of you.