Progress, slowly but surely

I have had requests from several of Elliott's fans to update the blog more frequently, even if it is just to say that he is stable or doing well.

While we can't quite categorize him as "stable," per se, he is where we want him to be at this point. He is becoming increasingly negative, in terms of fluid. This is a good thing. He is tolerating the latest vent changes, which lowered the pressure and tidal volume. This is very good. He has had to have the pacer turned back to 120 from 115 due to a drop in his heart rate, this is fine and within the realm of expected.

I'll post another update in a few hours. Thank you so much for keeping up with our little guy. He's pretty dang precious to us, and we are so fortunate that he is pretty dang precious to so many others, too! Thank you all!


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Abre su ojos

He's awake! Last night was a good night. Elliott tolerated the tiny tweaks of the ventilator very well, without issue. He became negative, which means they pulled more fluid off with the peritoneal dialysis Than the amount that went in. This morning they paced him down to 115, and it has remained on the sense mode for the past 20 minutes. This means that the pacer is sensing Elliott's heart beating at around 120 +/- and not having to pace for him. So, arrhythmia may be resolving and pacer may be a thing of the past! They are expecting to remove chest tubes on Tuesday or Wednesday and maybe start talking about extubation around that same time.

Our little guy is making some headway!




It's so good to see his sweet blue eyes.


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Recovery Day 2 pictures

Here are some pictures. Eventually, I will label everything.

















They are increasing the concentration of the dialysis solution to pull more fluid off of his poor swollen body.





He has so many tubes an wires. I like to think Elliott is on an adventure as an astronaut, on a special mission to Mars. All of the tubes and such are just life supporting measures for his Martian expedition!





Here is a picture of pretty sats. 97 is excellent. Moments ago, he was in the mid 70s. A bit of ventilator tweaking and bag induced hyperventilation to breathe off CO2 seems to have improved our numbers.












The ventilator, Elliott's best friend/worst enemy? I think today's attending, Dr. B, has a darn good handle on this beast. He made a few changes after Elliott's last desatting episode that seem to be agreeing with him. Perhaps it was just the ticket for Elliott and the vent to sign a treaty, or at least a truce.











He started out with 13 of these pumps post op, he is down to 11!





Nitric oxide for relief of pulmonary hypertension.





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A million times, thank you

I would like to take a moment to thank our friends and family for their support.

Thank you, Gregg, for taking care of the Lubbock house and our kitty cats (whom I miss so terribly much!).

Thank you, Munah Vadgama, for providing a close, comfortable place to stay, and keeping us well stocked with the delicious pastries from Croissant-Brioche.

Thank you, Mike Griggs, for taking us for dinner and fro-yo both pre- and post- delivering Elliott.

Thank you, Terri Thurman, for decorating the house, looking after the critters, and providing a wonderful lasagna meal.

Thank you, Jennifer Cagara, for the delicious lasagna dinner.

Thank you, Jan and Phil Taylor, for looking after the critters, dinners, quiche (which is so delightful!), decorating the house, washing Elliott's diapers, caledula cream, what am I forgetting?

Thank you, Mandy Olson, for iron on labels so Elliott can "pimp his bassinet" with the lovely hats, socks, and blankets all of his admirers have provided.

Thank you, Rachel Sparks, for your doctor appointment taxi service, parking fee forgiveness, lunches, love, lifelong friendship, and a million other things that I cannot even begin to list.

Thank you, Vicki Wright, for your love, support, and spiritual strength while we awaited news of Elliott's surgeries.

Thank you, Michelle Franklin, for lunch, donations to the parking fund, and your constant support.

Thank you, Amanda Meckel, my littlest sister, for photo documenting this journey and being so strong for us.

Thank you, Lauren Meckel, my middlest sister, for being so strong for us and giving your love every step of the way.

Thank you, Mom, daddy, and Sharon, for committing to this journey with us and being there to guide us along the way, as you have always guided us. We are infinitely grateful for your love and support throughout the pregnancy and Elliott's adventure.

There are so many people out there who have touched Elliott's life, through positive thought and prayer. A million times, thank you. Please continue to keep him in your hearts as we traverse this tumultuous path.

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Recovery day 2

I apologize for the lack of updates yesterday. It seemed every time I started an update, something would change. I cannot begin to convey how difficult it is to watch your son's life hang on the balance of a few numbers and graphs on a monitor. Throughout the day yesterday, Elliott had moments of desaturation and a couple of episodes of arrhythmia. Thankfully, the spells of desat were only into the 70s before his team was able to get a handle on what Elliott needed. He is a challenging case because his surgery was so complicated and he is such a little guy.

This morning, Elliott looks good. The term "looks good" now means that his numbers and graphs and blood gases "look good." They added nitric oxide to his oxygen mix to help dilate the pulmonary artery, as pulmonary hypertension explains the desatting episodes. I will ask the docs during rounds whether they anticipate this to be a chronic issue or part of his recovery.

We look forward to being able to touch Elliott again and hold his little hands and toes. He has made some progress that helps me feel closer to that point.
1. The pacer is down to 129 from 140. This means arrhythmia may be diminishing. Okay. Just had rounds. Arrhythmia is still present, so they are continuing to pace the atria above the ventricles. So, it's still a waiting game.

2. After adding the nitric oxide, they were able to reduce oxygen level to 70%. This is good.

3. His sats are currently at 92. While you and I are likely at 98-100, high 80s to low 90s are decent for Elliott. We are hoping that his sats increase as he heals. At this point, I am happy for anything above 80.

4. His meds have been reduced. It is a good thing to walk in and see fewer pumps on his bed.

Okay that is all for now. Please keep us in your thoughts and prayers, as we are still critical and sweet Elliott needs your strength and support. Thank you all so much, as it is really comforting knowing we are not in this alone. Love to you all.



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15 hours post op

Here's some more detailed info on Elliott's condition:
1. Surgery went well. Dr. M is pleased with the outcome in terms of structure.
2. In terms of function, Elliott has develop a very dangerous complication- an arrhythmia that has been periodically popping up. Basically, the atria should pump, to load the blood, then the ventricle pumps to deliver the blood to the lungs or body. During this arrhythmia, Elliott's ventricles are pumping first. Essentially, the ventricles are pumping faster than the atria. So the ventricles are squeezing without having received the blood- like a well pump in a dry well. To mitigate this, they are keeping him cool, closely monitoring blood pressure, and the have pacing wires and a pacer that is set to pace the atria faster than the ventricles. As long as his junctional rate stays low, this is relatively easily managed with the pacer. So far the pacer has been adjusted quite a bit, in search of that sweet spot. It has gone from 155 to 145, back up to 165, and it is currently down to 140. Now, it is not suspected that this is due to any damage, per se, to the conductivity hub of the heart per Dr.M and the electrophysiology consult. It is more likely related to the trauma of major surgery and resultant edema. Therefore, we expect that the pacing wires will be removed sometime in the next few days.

3. Dr. M was in to check on Elliott this morning. He was pleased with his current status. He said that the next few hours to the 24 hour and then to the 36 hour mark are critical. Blood pressures tend to drop, as the effects of having been on bypass begin to appear. During this critical period, Elliott's blood gases, cerebral profusion, kidney function, etc will be very closely watched. He is also expected to remain on peritoneal dialysis to help out his kidneys and flush toxins from his blood as a preventive measure for the next 24 hours or so. The team will be continually monitoring his condition and adjusting his medications accordingly. This is an expected part of pediatric cv surgery.

4. I will try to be sure to update when I have news. Thank you all for your continued support. I am adding pics below. While it is really difficult to see our little man like this, please know that he is not in any pain and take comfort knowing that he will have no memory of this adventure. Of course, we will share these posts with him when it is appropriate- as Dr. M says "to help him understand why mom and dad are so crazy protective."





















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An update from Mark

Thanks to everyone for keeping my family in your thoughts and prayers. It's so nice to know that we can count on all of you for support when we need it most. The last two days have been the most stressful of our lives. Though we are far from things being perfect, tonight Elliott sleeps peacefully and most importantly medically stable. The doctor has warned that things can still go wrong, but at least he finally had the confidence to let the surgical team go. We feel fortunate and know that several small miracles and a few big ones have made it so that Elliott continues to be with us. We also feel that it is in large part due to the overwhelming support you all have given us over the last few months, especially days. Please continue to think of and pray for Elliott. He will likely be in cardiovascular intensive care for a while and he can use all the positive energy, so can we! We love you all!


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