We hear hooves...couldn't it be zebras?

Well, today started kinda rough and ended just the same. In between was some frustration, some of the usual suspects, and more change.

Mason and I awoke to the folks coming in to draw more blood. Thankfully, this time, they were able to get a bunch on the first poke so they were able to do all of the labs they couldn't get done last night and the ones that were ordered this morning. The electrolyte levels weren't improved as we had hoped, instead, some of the key indicators were still not good (chloride was still low, retained carbon dioxide was higher, and kidney function was worse). Basically, it means that the diuretics are still drying Mason out, but they aren't helping like they should. On a positive note, Mason has a ton of blood (not anemic) and his sodium and potassium levels looked good.

We did not see improvement with Mason's breathing today, unfortunately. It seems that the improvement from the changes over the last couple of days leveled out and without more change, we probably wouldn't see more improvement. So, we added a medication called arginine chloride which should help to "reset" Mason's electrolytes and hopefully enable us to begin making progress again. Apparently, with a low chloride level, the diuretics aren't as effective, so one has to take higher doses, resulting in even lower chloride, and the downward spiral begins. The low chloride and high carbon dioxide retention also mean that Mason's kidneys have to work extra hard and are at risk for damage if the situation doesn't get better. So, hopefully the arginine chloride will help things get better so that we can avoid damage to the kidneys. Mason just finished his day with yet another blood draw to see whether or not the arginine chloride worked. We will know more in the morning.

We continued our conversation with the doctors today about how/why all of this happened after a really good few months. We had several theories, but the pulmonologist has settled on the same as before - aspiration. He thinks that in all likelihood, despite the surgery last December, Mason's lungs are still getting damaged by food slipping into his lungs by reflux. He's still of the mindset "if you hear hooves, think horses, not zebras." We're not convinced it's the same "horses" and want to keep looking for the "zebras," but need to go through the steps to rule out that Mason has "silent aspirations" in which a little bit of food might be slipping into his lungs without any of us really knowing for sure. The running idea is that some of the food goes back up his esophagus when his stomach gets too full. To test this theory, we have been advised to change to continuous drip feedings. This means that Mason will be hooked up to a feeding tube and feeding pump 22 hours per day. With smaller amounts in his stomach at all times, hopefully there won't be that overflow reflux into his esophagus. The pulmonologist has asked us to do this for at least a week to see if it makes a difference. So, we started tonight.

To say continuous drip feedings will be a challenge is an understatement. As a developing toddler, Mason is just learning that he is able to explore his environment. He has learned to cruise and crawl around his oxygen tube for the most part, but we need to keep fairly constant watch to make sure that it doesn't get caught up on something and he gets hung up by his nose (I gotta say it's kinda funny at times...I know, bad Mama!!). He is a little more challenged by the oxygen sensor since it's a shorter wire, but most of the time we disconnect it while he's up and walking since it doesn't read right while he's standing anyway. Now, with the addition of the feeding tube, we'll have a bigger challenge making sure nothing gets pulled. We have learned the hard way that if the feeding tube gets pulled hard enough, the "button" (the tube that actually goes into his stomach) can get pulled out - and that's no fun for anyone. As with everything we have gone through, this will be a challenge we will meet. We will figure out how to make it work. As always, we will do whatever it takes to keep Mason safe while his little lungs have a chance to grow.

For those of you who are the praying sort, please say an extra prayer for Bill and I to have patience when we feel like we're hearing a broken record and to have the creativity to figure out how to make the continuous drip feeding work. Please also say a prayer for Mason to have the flexibility to learn how to play and explore his environment with 1 more tube.