Hey guys! It has been absolutely crazy around here lately.

Chase’s cath appointment has been set for the 15th (of this month.) That’s still all we know as far as that goes; we won’t be able to get more information on what’s wrong or how they plan to fix it until they are actually in there, taking a look. In other news, though, Chase woke with a fever and lethargy Friday morning. We still aren’t sure what caused it (Strep culture came back negative, but his throat was red enough for his pediatrician to suspect it anyways.) Sometimes when it rains, it pours, huh? He’s been put on amoxicillin for the next ten days, in hopes that it will wipe out whatever he had brewing and also inoculate him until the procedure. I’m not a fan of over-medicating (especially with antibiotics) when we didn’t really know what was wrong in the first place, but unfortunately with a hospital visit just around the corner we really can’t take any chances. Better safe than sorry. 

He’s been a little trooper, though, and has been running around fever-free all weekend. (Literally. There is no shortage of energy over here!) The antibiotics have been upsetting his stomach, but we are thinking some immodium ad will help him out, and are hoping for smooth sailing until the 15th. (Fingers crossed.) As always, we’ll let everyone know as soon as we find out more.

         Have a great day, guys! 

This month, we are ten months post-Nikaidoh. (Yesterday was his ten month anniversary, actually.)

Thursday Chase had his first cardiology appointment since October of last year – 6 whole months without a visit to the office! That’s some crazy stuff, folks.

I wish I could say it went exactly as expected (“Hello! Looks great, see you again in six months!”) but that unfortunately wasn’t the case. The echo-cardiogram picked up increased pressure on the left side of Chase’s heart; it seems that his conduit is narrowing. Normally they don’t expect to see this until 5-10 years post-surgery, due to buildup or just because the body is outgrowing the bovine tissue. However, since it’s only been ten months this is pretty obviously not the case. The pressure increase is pretty drastic, and there’s just no way that scar tissue or calcium could build up fast enough to cause it. (Right after surgery, Chase’s pressure was at 7 mm. 0 mm is a “normal” heart, but 7 mm is very good for a heart with a conduit. At his next appointment pressure was at 36 mm, which was sort of a jump up but still within normal ranges. This last echo picked up pressure of 80 mm. Definitely a big jump, and definitely out of “normal” ranges.) We were told that occasionally a kink develops in the conduit, which could be what’s happening here. 

At any rate, an echo-cardiogram is not the most reliable way to measure this particular issue, so it’s been recommended that we head up to Atlanta sometime in the next couple of weeks for a catheter procedure. It would take a look at what’s going on, and say either “Oh, there’s narrowing but the echo was waaay off. No intervention needed right now!” and off we skip. Or they could say “Hmm, yup, this narrowing is severe enough that we really should just go ahead and take care of it now, since we’ve already got you here and everything.” If we’re being realistic, the chances are that we’ll hear option #2. Probably the narrowing won’t be quite as severe as 80 mm because Chase isn’t showing any of the symptoms you would expect (loss of energy and appetite, possible fainting spells, and pressure on the heart wall.) But something definitely changed enough for the echo to pick up on it, so we’re expecting some sort of intervention to happen at the appointment as well.

Of course, since we don’t know how narrow everything is or why, we really don’t know what they will do to fix it. More than likely they will either perform a balloon catheter to expand the conduit, or they will place a mesh stent in the conduit to keep it open. The good news is that these procedures are fairly in-and-out; if they place the stent they will probably keep us overnight for observation but otherwise we can expect to go home that same day. Our cardiologist also assured us that although this is not something they expect or like to see so soon after surgery, since the Nikaidoh is so new it’s not totally unexpected to encounter these sorts of “road bumps”, and he doesn’t expect it to affect the long-term outcome. 

Although hearing all of those things is reassuring, it would be a lie to say that we aren’t worried. We hate to bring Chase back to the hospital soon, and would appreciate any good vibes/prayers you guys could send our way. And of course, we will keep you updated as soon as we know more. 

          xoxo,

                     Sammy 

Yesterday marked one whole year on Earth for Chaseton. To say that we were excited is a huge understatement – the day was filled with messages, phone calls, skype sessions and facebook well-wishers who blew me away with care for Chase.

We had an amazing party with family and friends over Labor Day Weekend, and spent yesterday together as a family enjoying the official start of Fall.

Looking back on his first year is a difficult and wonderful thing. It’s always hard for me to remember the morning after his birth (one year ago today, as a matter of fact,) when his wonderful pediatrician came in, frowned, and mentioned “a murmur.”

After that, a blur of garbled medical updates as they took my fresh baby away to the nursery. A cocktail of drugs, hospital transfers, all culminating in a trip to the Children’s Hospital in Atlanta, two hours away from where I was being kept until I could recover from blood loss during his birth. I look back and wince. I look back and am filled with pride at the amazing progress Chase has made.

That any baby could go through what he (and what many, many others) go through and come out the other side a smiling, friendly child is such a source of amazement to me.

That any child could amass over one million dollars in hospital bills before his first birthday is mind-numbing. And yet, here we are. That story is his.

All I can do is look in wonder at the miracle sitting on my lap. He’s growing, (he jumped into 12-month sizes yesterday! Well played, Chase.) He’s happy (unless the strangers at the supermarket wont wave back,) and he’s filled with life and good-humor. I could not be luckier. This first year has been by turns harrowing, heartbreaking, and awe-inspiring, but it has always been worth it because, at the end of the day, I get to kiss my hero goodnight.

P.S. Check in next month for a cardiology appointment update!

First of all, I’d like to offer my apologies. We didn’t mean to leave the blog at such a bad stopping point! (As a matter of fact, with the whirlwind few days we had following that post, we didn’t even remember. Whoops!)

And so today, seven weeks post-op, I’d like to shine a little light on where we are now.

When we left you, Chase had An Episode (that’s how I refer to it in my mind.) That night, his oxygen saturation levels plummeted. It happened several times, as he began to fall asleep. Brandon and I spent a sleepless night glued to the monitors, watching with our hearts in our throat.

Luckily, after the initial scare it didn’t happen again. The general consensus was that exhaustion coupled with a cocktail of pain medications (especially Lortab) caused Chaseton to fall asleep too quickly, making him unable to regulate his breathing and causing his oxygen levels to drop. Chase spent an extra day in the Step-Down unit being observed closely by his doctors (and his great nurse, John!) before we were released on Friday – exactly one week post Nikaidoh.

From then on out, it’s been smooth sailing. (Knock on wood.) Chase was quickly weaned from his blood-pressure medicine, and then the lasiks (which prevent fluid buildup around his heart.) His post-operative xrays and echocardiagram looked great, and we are now at bi-monthly cardiology appointments. In fact, after this next one we hope to stretch the time to every six months!

He has been cleared for daycare and flag football (if only his coordination would allow it! 😉 ) and we really couldn’t be happier with his progress. He has been gaining weight and getting taller, and we hope that this manifest in his growth chart (as he is still quite small for his age.) Just as exciting, he is fast approaching his first birthday!

Which, of course, will warrant a post all of it’s own.

Until later, I thank you all for your patience waiting for this post! Happiness and good health ❤

I’m going to start this story with something that happened before my last post. I was not sure of the implications or ready to deal with any complications that it may have provided. So I left it out of my last update.

What is left of the circus was packing up and getting ready to head to our hotels for the night. I was standing out in the hospital hallway with a few others when the respiratory therapist walked into Chaseton’s room. Seconds later he ran out calling for a doctor. I ran into the room and noticed Chaseton’s oxygen saturation was at 50%. Reacting without much thought I grabbed him and lifted him in to a sitting position and started patting him on the chest like I had seen the therapist do before. After a second or so of this he sucked in a large lung full of air and his sats started to climb. As this was happening the medical team rushed into the room. His sats quickly climbed into the 90’s and stayed there while he was awake. He had several doctors respond to the call. After checking him over they all agreed to watch his progress closely. They all left and Chase started to settle down. He had been up all day and really needed to get some sleep. As we watched him he started to drift off to sleep. His sats immediately started to drop. When they reached the mid 80’s I woke him up and they climbed back up to 100%. This happened two times before we called the nurse and asked for him to go back on O2. Chase spent the night on a low dose of 02 and had no further problems. Both Sammy and Brandon were with him all night getting very little sleep themselves.

Thursday morning we were able to get to the hospital rather early, knowing that Sammy and Brandon would need some rest. Chase was scheduled to have his last two drains removed at 11 am. Sammy and Brandon decided to stick around until that was done.

Chase came back from that procedure with a completely different view on life in the hospital. We actually got our first smile from him within just a few seconds of his return. Yes, it may have been the drugs. He continued to grace us with that wonderful smile many times during the day.

Sammy and Brandon headed back to the Ronald McDonald house to get some rest. Cyanne (Chaseton’s aunt) and I were the appointed baby sitters. We thought he would get some sleep but soon after he returned from his drain removal the echo tech arrived to give him the once over. We already had a tired, grumpy baby when she put that cold gel on his chest; oh look out. Now we had a tired, grumpy, pissed off baby. Did he ever let us know it. Yes we had our hands full, but it was all in love.

Just after the echo tech left they showed up in a red wagon to take him down to x-ray. I have some video of the trip. He enjoyed the ride. Sue and I helped them perform a chest x-ray and then had a fun walk back to his room.

Chase was able to catch a short nap before the respiratory therapist came in to bother him again. After that Sammy and Brandon came back and we all took him for a walk in the hospital garden.

What’s left of the circus ordered in pizza and we all ate in the hospital cafeteria. Chase included. It was a bit of a sad night because three of the circus members need to leave tomorrow. The crew will now be down to two, plus Sammy and Brandon.

I don’t know how to properly express my thanks to the entire circus. We started out at 14 and every one of you was a valuable member of our crew. You all brought a different perspective to our group and every one of you were a great help. Thank you for being with  us during this very difficult time.

The jury is out on whether Chase will head home on Friday or Saturday. We will find out more in the morning.

Once again my editor is sleeping so I am posting this without her help. I’m sure there will be plenty of mistakes. I hope they will be corrected in the morning.

Chaseton’s Grandpa

No, Chase has not suddenly learned to walk. The pace of his recovery has slowed down to the pace of baby steps. We are not moving backward but our forward progress is slower than what I hoped for. Having no basis for my expectations it is quite possible that his recovery is exactly on schedule.

The last 2 days have given us an overly tired, very grumpy baby. Not that I would expect any thing else after what this child has been through. We have spent long hours in the hospital doing our best to cheer him up.

The doctor is thinking that they may be able to remove his last 2 drain tubes and that should help increase his comfort level quite a bit. Sammy was able to hold him a few times today. It had a great calming effect for both mother and child.

Only time will tell what tomorrow brings. We hope and pray for the best.

Chaseton’s Grandpa

First let me apologize for not updating this blog sooner. I just did not have the drive to write.

When we last left you, Sammy and Brandon had a short chance to visit with Chase about two hours after his surgery was completed. Staff shift-change was about to commence but they let them sneak in for a quick peek, kiss and update. Shift change takes a long time. Each patient is discussed with the incoming staff in detail. So we had a couple of hours to kill and talked Sammy and Brandon in to joining us for dinner.

We picked a small Mexican place not too far from the hospital. Soon after the first round of margaritas were served it was obvious that the circus was ready to blow off a bit of steam. Sammy was wilting quickly and she and Brandon orderd their food to go. When it arrived they headed back to the hospital. That was probably a good thing. I’m not sure they wanted to witness the rest of the night. There are rumors of a video but I’m sure it will never appear.

The following morning (Saturday) we all met up at the hospital. Some were a bit worse for wear. 😉 It was a long day; each member of the circus was able to visit Chase at one point or another. He made steady progress all day. Kidneys started to function, oxygen was reduced, most of the meds were cut in half. It was really strange to see our baby with pink lips for the first time. His O2 saturation was running at 100% vs the +/-80% we were used to.

Saturday night the whole circus was able to sit down and enjoy a very nice meal together. It would be the last for this group on this trip. Some of the key members had to head home in the morning. They will be missed in the days ahead.

Sunday was Father’s Day, Brandon’s first. I’m sure that he never envisioned spending it like he did, but what better place could a father be than supporting his son in a struggle like this one. I’m sure Brandon would agree. I know I would not have traded my place by my daughter’s side for anything in the world. My parents and Chaseton’s grandma’s parents were with us also. I know they feel the same. It will be a day to remember, always.

Sunday morning at the hospital we were greeted by the surprise that his breathing tube had been removed. Over the course of the day Chase made great progress. Sammy and Brandon had a chance to feed him his first meal in three days. Yes, he was a bit hungry :).

We all had a chance to visit and everyone left with a sense of well-being.

Monday morning was filled with more good news. Sammy and Brandon were able to sit in on morning rounds and talk to the doctors. Chase had continued to improve and the staff was ready to move him out from the CICU to the step down unit. It has a bit less care than the CICU, but more than a normal hospital floor. During the course of the day things slowed down a bit. Chase had some fluids building up in his left chest cavity that were compressing his lungs a bit. They had to install a drain to remove the fluids. His lungs were also congested and were not allowing as much O2 to pass as we would have hoped. It was decided, much to my agreement (not that my opinon had any revelance to the decision), that Chase should spend one more day in the CICU just to make sure everything was ok.

What was left of the circus went out to dinner and called it an early night. Except for my self, who finally found his moose (inside joke) and got down to writing again.

I can’t wait to see what tomorrow brings. Every day is an adventure.

Chaseton’s Grandpa.

Today began at 4:00am with a cranky baby who just wanted to eat. Unfortunately that wasn’t in the cards, and sleep was out of the question after that. We got to the hospital around 5:45 and Chase carried back to anesthesiology (totally asleep) at 7:30.

And then we waited.

And waited…

(And waited.)

We got garbled updates every hour/hour and a half, and we remained cautiously optimistic. Our final update was received around 3:30, and we got to meet his surgeon shortly afterwards. Everything went smoothly, and he considered the Nikaidoh procedure to be a success.

It is now 6:18, and we are still waiting to see our baby. He is stable (and his heart is beating on its own!) but his arterial line isn’t working so we are waiting on them to replace/repair it. Shift change begins in ten minutes, and if we don’t get to see him by then we’ll have to wait until 8:30. I may just be rambling at this point (and if so, I apologize) so I’ll leave you now and update when we know more.

As always, we are beyond grateful for your kind words, prayers, and positive vibes. They mean the world and I’m convinced they make all the difference.

Chaseton, Sammy, Brandon and Grandma spent the day in the hospital doing pre op. Chase was his happy self all day, taking all the poking and prodding in stride.

The rest of the circus was busy descending on Atlanta. We were all able to get together for a nice visit and dinner. Remarkably a very strong thunderstorm broke over the area during our meal. The wind blew open the door to the restaurant sending menus and napkins flying all over the place.

Maybe the storm broke early and we will have smooth sailing in the morning. One can hope and pray.

This picture was taken just before the storm broke.

Chase needs to be at the hospital very early in the morning. The surgeons are planning to perform the Nikaidoh procedure on him and expect the operation to take about 6 hours. It is going to be a long stressful day for the circus. I have confidence that we will handle it with aplomb.

The second chapter in the life of Chaseton is quickly coming to a close. This chapter started on Tuesday October 2^nd. Chaseton was 9 days old when he arrived at his home for the first time. It will end on Friday June 14^th as he undergoes surgery to repair his heart. Then the third chapter will begin.

The last 36 weeks have been great! Chaseton has thrived during this time. He is a happy, easy-going baby who NEVER cries. We have been blessed with several visits by Chase and his parents. Also we have taken every opportunity that has presented itself to travel up to Georgia and visit. Grandma more often than the rest of us as is to be expected. 😉 Everyone who has had the opportunity to meet Chase has been amazed at how happy and healthy he is.

During the course of this chapter there has been what I think of as dark storm clouds on the horizon. We have all been aware of them but were able to put it in the back of our minds and enjoy the times we have had. Over the past few weeks the clouds have been growing, getting closer and more ominous.  The surgery is scheduled for later this week and it is now impossible to ignore the coming storm. We can only hope that it will be mild and over quickly with many sunny days in Chaseton’s future.

The Gathering will begin on Monday when Grandma travels up to Georgia to help Sammy and Brandon with the overwhelming task of getting everything ready for the trip to Atlanta. They will make that trip on Wednesday and Chaseton’s pre op is scheduled for early Thursday morning. It is expected to take most of the day. Surgery is scheduled for Friday morning. The rest of the circus (and it has grown) will arrive by car, plane and motorcycle on Thursday. It will include Chaseton’s 4 grandparents, 4 great grandparents, 2 aunts and 1 great-uncle. What a wonderful support group for Sammy and Brandon!

I will be posting updates on this blog as well as on Facebook. If you are friends or family who would like more and faster information you can follow me on twitter @chasetonsstory

The twitter feed is a locked account so please let me know who you are when you ask to follow. I may not recognize your user name.

For all of you who have kept Chaseton in your thoughts and prayers we thank you!

Chaseton’s Grandpa