The "Devil" Is in the Details

Today started out pretty rough, increased oxygen need, more puffiness, and the IV didn't allow for the blood draw. Turns out Mason's fluid level got too high again, but after a scheduled dose of lasix, Mason peed off between 10 and 11 ounces (yes, ounces) of fluid and started to do much better. Then, for the afternoon blood draw, the IV was willing to give up the blood so we avoided another poke. Hallelujah!! The doctors tweaked his medications (potassium and chloride most notably) a little bit based on his lab results, but no major changes for the day. Mason is doing well right now on 4.5L of oxygen and may be able to get turned down a little more before the night is through. It's looking like we're getting closer to the right recipe for his diuretics and supplements.

We did have to spend Mason's 2nd Halloween in the hospital, but on the bright side, he got a lot more "He's so cute" comments than he would have sitting at home. Mason dressed up this year in a costume that was befitting of his mood today - a little devil. Cutting teeth while being cooped up in a hospital bed for 5 days is probably not the best for a toddler's mood (despite what the pictures may indicate...)

Finally, we've got the devil behind bars!

Mason's mastered the art of waving "Bye Bye" while in the hospital (lots of practice with the number of people coming in/out). Of note, the "cast" on his arm is just keeping the IV safe from little hands getting ahold of the tubing.

Did you know devil's have bat wings? I sure didn't, but man they were cute!

And now back to reality: Tomorrow will probably be a day without major changes. We've asked the doctors to give Mason a break from chasing his labs for a day to see how he does. We know that he typically needs a couple of days to accommodate to a change. Since no major changes today, tomorrow will be his 2nd day. Then, on Monday, we'll start to explore what to do with the food issue.

The only piggies around Mason are his toes...

We made it out of the PICU today! Mason continued to do better throughout the day and was stable on 5-6L of oxygen. He had no coughing all day long. And best of all, his H1N1 (Swine Flu) test came back negative - NO FLU!!! Though we were pretty sure the test would come back negative, we were very relieved to hear the results . With the help of a little tylenol, he was even able to take a little nappy poo (wish I could say the same for me...).

So, the current theory of why things went so badly yesterday is that we did not keep up with his fluid levels. In other words, we did a great job of making sure his labs improved, but in doing so, he did not get enough diuretics. So, the inflammation in his lungs increased and he couldn't move air as much. The coughing, as anyone with asthma could tell us, was related to trying to move air through his lungs. The tighter they are, the less he can breathe, the more he coughs. Thankfully, after a huge dose of steroids, a huge dose of lasix, and a few nebulizer treatments, he was doing much better.

They have not ruled out aspiration (in fact, the lung doctor is still sounding like a broken record), so we are going to continue to keep Mason on IV fluids instead of food for a few more days. One less variable while we are trying to get his diuretics under control. Once the diuretics are under control, we'll talk to the GI folks about whether or not we should try feeding him straight into his intestine like we did last fall so that we can avoid any possible reflux. We need to find out a bunch of information about the ways to do it, but this type of feeding does sound like a definite possibility - either through a nose tube, putting a longer tube through his stomach (where he already has a feeding tube), or placing a new tube straight through is right side into his intestine. The feeding schedule would still be challenging, but if it's what we have to do, it's what we have to do. But like Scarlett O'Hara said, "I can't think about that now. I'll go crazy if I do. I'll think about it tomorrow."

Thanks to everyone for their continued thoughts and prayers. We appreciate them!

Improvement noted...

Just a quick update to let folks know that Mason is doing better. He's back down to 5L and saturating better. He has stopped coughing and is no longer wheezy. He didn't sleep much last night, so is still a little crabby.

We are still awaiting the H1N1 test results, but by the fact that he is better, they don't think he has it, thankfully!!!! We are still in the PICU, but will hopefully be transferred back to the medical floor later today or tomorrow.

Thank you for all of your prayers!

A Really Bad Day

Today didn't go as expected. In fact, it was much worse than expected. I did make it into work for several hours, but then returned to find Mason needing much more oxygen (up to 7L) and coughing a lot. After another chest xray, another set of blood tests, and one giant booger, things didn't get better. There isn't a good explanation from the doctors as to why Mason got worse -- his chest xray didn't show any changes, his chloride level was better, his potassium level was better, but his retained carbon dioxide was much worse. The only change from yesterday to today was the continuous drip feed. Our theory is that since he constantly had food in his stomach, he never got a break to allow the food to move through his system fully. So, either he had continuous aspiration (to build on the pulmonologist's theory) or he never got a chance to rest his system. We can control the aspiration when he gets periodic feeding, but when it's continuous, the medications aren't allowed to work as well and his stomach is never allowed to empty. Doesn't work well for Mason. Unfortunately, it meant things went from bad to worse for him.

The doctors really are very worried about his coughing, the onset of wheezing in his lungs, and his really bad carbon dioxide reading. So, they've done a flu culture (which is where the giant booger comes in) to rule out H1N1 (swine flu). It is possible that all of this could be caused by the flu. We don't believe he has it, but the doctors are being extemely cautious. They have also sent us down to the PICU where we will likely stay until the flu culture comes back negative (we're assuming it will) or until he does much better. It will be at least until Saturday before the flu culture comes back, so we'll just be camping out.

This most recent worsening has been hard to take. If this does turn out to be H1N1, Mason is at a very high risk for the complications related to it. Please send all of your positive energy and say a ton of prayers to help us get through this and help Mason get better.

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.

"Double, Double Toil and Trouble"

Either Mason has turned into a chemistry set, the doctors are making a really good stew, or its Halloween and the witches are mixing their brew.

Mason has been doing well today, with a decrease in oxygen to 4L (down from 5) yesterday. His energy continues improve as well. We spent much of the day trying to understand all of the moving pieces of Mason's electrolytes and his diuretics. His labs came back this morning with a decrease in potassium and chloride, but an increase in the amount of carbon dioxide he is holding in. Basically, this means that the diuretics are working extremely well, and now we need to bring his body back into balance.

So, the doctors are adding more potassium chloride and more lasix, but stopping the other diuretic. The hope is that between all of the changes, we'll find the right balance and get Mason's lab values back to normal.

We will continue our discussion with the doctor about what caused all of this, but once again may not get a clear answer. There are still more blood draws to be done, more tests that can help paint the picture of how we got here, and more decisions to be made.

Thanks for all of your thoughts and prayers. Mason's improvement is evidence of all of those efforts!

Seeing the Lytes

Day 2 brought Mason some improvement and a bunch of "hurry up and wait" -- well at least for us; the doctors have been very busy. The doctors have been busy talking to each other and trying to figure out what to do next. The theory is that his diuretics are not keeping up with his need and we can't increase the diuretics because they are causing his electrolytes to be out of whack. So, the attending pediatrician has talked with the lung doctor and the kidney doctor who has talked with another kidney doctor and a heart doctor. Did you follow that? Basically, everyone is talking which is always a good thing for Mason.

So, here's the plan (brace yourselves, we're going technical):

Switch from sodium chloride to potassium chloride (done last night)
Decrease the diuril and start a regular dose of lasix with the intent of replacing diuril with lasix (switching 1 diuretic for another).
Monitor electrolytes daily to make sure that all of these changes are safe - to do this we either have to have daily blood draws or hopefully they can start and IV from which they can draw blood.

While this may not seem like it's that big of a change (basically switching medications that do the same thing), it is actually kinda scary for us. Mason has always been very reactive to minor changes in his medications and changing from 1 diuretic to another is actually a very big change. We are nervous that it might be too big of a change, but hopeful that it will help him get better. The doctors and nurses are monitoring him constantly and we are always with him. We know he will be safe during these changes, just need to have faith that it is the right answer.

Please pray that this transition will be "easy" for Mason and that it is the right answer.

Groundhog's Day

It feels like we're in the movie. You know, the one with Bill Murray - the one in which he relives the same day over and over and over again. Well, that's where it seems we are.

Sorry I haven't posted in such a long time. We've been struggling with Mason's breathing since the last post on his 18 month birthday.

Lungs:
When last I wrote, we had just started a course of antibiotics for Mason's 2nd aspiration pneumonia. Unfortunately, that only worked while he was on the antiobiotic; a couple of days after the last dose, he was on his way to needing more oxygen again. So, we started a steroid burst (a huge increase in his normal dose with a drastic, quick decrease back to his normal dose). Again, it was effective while he was on the burst, but unfortunately, a couple of days after his last dose, his oxygen need went up again. We repeated the burst, with the same effect. Then, last week we tried a lasix injection (high powered diuretic to help decrease the amount of fluid on his lungs). Unfortunately, once again, this only helped temporarily. So, after a very rough night last night on a whole lot more oxygen (4.5L vs. his normal 1.5L while sleeping), we are back in the hospital hoping that the medical minds that have helped in the past can do it once again and help Mason get back to being "healthy."

Eating:
The good news of the last month is that we have a handle on Mason's spitting up (for now, anyway). We had a visit with the GI doctor at the end of September and ended up changing Mason's medications. With a significant increase in one and the addition of another, Mason has all but stopped spitting up. We are very thankful for this improvement as the aspiration from spitting up was what got us into this mess to begin with! Mason is tolerating his food much better and we're cleaning up fewer messes (can't beat that!).

Kidneys:
We had our first visit with Mason's nephrologist (kidney doctor) last week. We have known all along that Mason has needed to be on diuretics so that his lungs don't fill with fluid, and have known that long term use of diuretics is not without risk. Apparently, the doctors just wanted to do a little more looking at whether or not now was the right time to make changes because his chloride levels (one of the electrolytes in the body) have consistently been low over the last year and his carbon dioxide level has consistently been high -- 2 bad things for the kidneys. We want to make sure he gets what he needs, but not permanently damage the kidneys in the process. Always weighing the pros and the cons of everything we do for Mason.

Anyway, I'm pretty sure our appointment was only supposed to last 30 minutes at most, but we ended up spending 2 hours with the doctor. She gave us a ton of information that took quite a while to think through and we still have a lot of questions about what is the right thing to do and when.

We are hoping that during this hospital stay we can get a care conference together so that all of Mason's specialists can work together to come up with a plan that is safe and effective for him. It seems that they don't want to increase steroids, they don't want to increase diuretics, but he needs both of them (and in larger quantities as he gets bigger), so they just need to figure out what is the right thing to do (i.e. the one that will have the fewest consequences and the biggest benefit!!)

Hospitalization:
So, bringing us back to today -- it sure does feel like we were in the same place last year -- troubles with spitting up, reflux causing increased breathing problems, weighing the pros and cons of medications, wondering if Mason's going to need surgery again (at this point, hopefully not). We're either living out Groundhog's day or living like broken records...

Mason's set to have blood drawn and a chest xray today. Hopefully we will be closer to answers about how to help him by later this evening or tomorrow. I'll keep you posted.