Monday, October 8, 2018

Today is NOT the Day...But That's OK!

Today is October 8th - the day we could have been going home.

But we're not, and that's OK!

Discharge has been pushed off a week, and is tentatively (it's always tentative!) scheduled for the 15th now. We just need a bit more time here to figure out the balance of diuretics and electrolytes. Samuel's body is showing that it needs high doses of diuretics, but giving those high doses makes his body get rid of electrolytes - mainly sodium and potassium. Those levels have remained low for a while now despite significant increases in the supplements that he is getting. If his diuretics are weaned then he has increased work of breathing and his sats drop, but if his diuretics are increased his electrolytes suffer even more. So it's been a non-stop balancing act that we still haven't quite figured out.

But truthfully? It didn't even faze us when we were presented with the idea of staying another week. What's one more week after 8 months away from home? We know that God had this in the plan all along. We know there must be some reason we are here for an additional week.
If nothing else, we have learned along this journey that God's timing is always perfect! Even when we can't see it in the moment, we have been shown over and over again that each moment, each decision, each holdup - they all have a purpose.

Remember back at the beginning of June when Samuel had surgery to get his trach and central port? We were supposed to be sent back to Arkansas Children's Hospital 2 weeks later! We were SO excited! But then Samuel started getting persistent mystery fevers. And we had some of the hardest days...We still don't know the cause of those fevers. But what we do know? What we do know is that without those fevers we would have been on a plane back to ACH before the end of June. Without those fevers we would have been gone from Delaware before anyone realized just how bad Samuel's GI issues were, and that he had been misdiagnosed with a pseudo obstruction. Without those fevers we would have been sent back with Samuel still on TPN, unable to eat, and an obstruction in his intestines that no one knew existed!
It was only because of those fevers that our timeline was pushed back, and because of that the GI surgeon was able to offer us another last-ditch surgery to relieve some pressure from his ever-growing belly. But instead of just relieving pressure, he found the one thing that everyone said wasn't there! And here we are 3 months later and Samuel is being fed milk through his g-tube! Not only that, but if they hadn't found the obstruction at that time? Possibly if it had been even a few more days...Samuel's intestines could have easily ruptured, and then this would really be a different story.

The point is that we never know what is best. Only God does. We have seen that over and over again, so we will continue to trust in Him. We are not about to let another week of hospital life get us down!

My first time wearing Samuel! I think you can tell that we both enjoyed it!

Child life bought by an exersaucer for Samuel to try out! With a few modifications, he enjoyed being able to sit up and play with some new toys!

Prayer Requests:

  • Pray for Samuel's fluid balance to remain stable. They did an x-ray today and his lungs are looking very clear! Which is great.
  • Pray that Samuel's electrolytes will stay in a good range.
  • Pray that the doctors can figure out why Samuel's body is requiring such high doses of multiple diuretics. The current state of his heart requires diuretics, but not this much. It is reasonable that he also needs some diuretics due to the state of his lungs, but (again) not this much. And while babies with EVC do often require more diuretics than most other babies with cardiac or pulmonary issues, the amount Samuel is on is even higher than what would be expected by that reasoning. Maybe it's the combination of those 3 things? Or maybe there's something else that we're missing...please pray that if something is being missed - if there is another cardiac or pulmonary issue that hasn't been diagnosed - that God will reveal it this week!
  • Samuel will be having another echo on Wednesday, but this time they are going to sedate him. They are trying to get very clear pictures of certain parts of his heart that are often difficult to see on babies with trachs. The reason they are wanting this is to make sure there are no other complications that they are missing - any other reason that he might be requiring so many diuretics. Please pray that Samuel does well for this, and that they are able to see everything that they need to.
  • Pray that Samuel will continue to remain healthy! No viruses or infections!
  • Pray that God will continue to prepare our way home! Especially pray for God to hand pick the perfect home nurses for Samuel - that they will be loving, trustworthy, and skilled.

  • We are closer to going home than ever before!
  • Today was the first day in several weeks that Samuel's sodium and potassium have both been within the normal range!
  • After almost 2 months of no growth, Samuel is starting to gain some weight! He is currently 12 pounds, 9 ounces!
  • Samuel is tolerating longer periods of time in his car seat! He requires a LOT of distraction, but I think we will be able to make it work for the 3-hour ambulance ride!
  • From the pictures you can see that we tried a few new things over the past week, and Samuel enjoyed each one!
This is His story, and it is all for His glory!

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