Update on Easton Rush's surgery

[pro reel]

This is a series of updates from the last 2 days combined into one.

Yesterday, Easton spent a total of 15 hours in the OR. He finally arrived back into his room at 11:15pm last night. The doctors warned us that he would be hooked up to an ECMO machine that has two clear tubes that pull blood out of his body, send it through this machine that filters it and oxygenates the blood, then the second tube puts the new oxygenated blood back into your body.
After sitting in a tiny waiting room for 15 hours, the Surgeon finally came out to discuss what had been done. During the first update call, the nurse mentioned something about Easton having some difficulties with the breathing tube and they had to perform CPR. This was the first thing Dr. E addressed. What had happened was after Easton was incubated, a physician from Ear, Nose, and Throat took a tiny scope down Eastons mouth that would give a better viewing of the valve on the backside of the heart. When the scope was being removed, without anyone consciously knowing, the breathing tube had been moved and was not in place. A few minutes later when Easton went into respiratory distress and all the alarms started buzzing, they figured out what was wrong and he quickly recovered.

Once they opened his chest, it took three hours to actually be able to visualize the heart. There was an abundance amount of scar tissue layering over the heart from the original open heart surgery back in September. After the extensive three hours of cutting through this tissue, it took another hour to two to cut away the muscle around his heart. Since Eastons heart was working three times as hard as a normal heart since he was born, his heart muscle was very very thick, approximately five times thicker than a normal heart. So keep in mind, it took about five hours total of cutting before Dr. E could even begin the valve repair.

On a normal truncal valve, and the posterior end there are four leaflets that open and close which assist with the blood flow going through the valve. One of the several issues with Easton's valve is that his four leaflets which should be skinny and come together in fact did nothing of that sorts. His were very bulky and did not combine. Imagine four balls that come together, but since they are circular they can not trap liquid, the liquid would just flow through there. This is the leakage problem with his truncal valve. Dr. E was able to shave away some of the extra material, and in fact recreate the leaflets. They also took down the central shunt that was placed during his first open heart surgery, and placed a new shunt that connects from the Pulmonary arteries and closed the VSD. Keep in mind, during this 6 hours of "repair," Easton was on a heart lung bypass machine. Typically, when you undergo a heart operation, you are on bypass no more that two hours, so six hours is a large amount of time.

When the operation was done, they took him off of the bypass and he had a few complications. First off, his heart function was low, and his nears numbers look terrible. These tell you how well the body is being oxygenated. Also, the chest tube from the left side of the heart was loosing a good amount of blood. Dr. E decided it was best to put Easton on ECMO, a machine that is considered life support. This machine does all the work of the heart. He was put on this to give his heart a few days of rest after the very traumatic surgery. Also, some of his labs post surgery showed that his heart was under a great amount of stress, so giving his heart a chance to rest just made since.

Throughout the day, the bleeding has continued to get better and is almost in the "normal" range. The major issue today is his comfort level. They have had a difficult time keeping Easton completely sedated. It actually is very difficult to watch, occasionally Easton will move around and I can see in his face he is crying. He clamps down and his blood pressures go crazy. The doctors say he is having this issue since Easton has been in the hospital who whole life and has always been on pain killers, he has build up a tolerance for them. In the last hour, he looks MUCH more comfortable and I have not seen him twitch once. The next step is to start Heparin here soon, which is a blood thinner. When you are on ECMO, you need to be on a blood thinner to prevent clotting of the tubes.

Little bit of a change of plan for today now. Since the echo showed that Eastons heart still needs a tad bit more rest, they decided to hold off on removing the packing until tomorrow. Since there is no pertinent hurry to remove it, the doctors would just rather wait.

Overnight the bleeding from Eason's left chest tube has almost subsided, and any blood that is draining now is a very light watery blood which is what the doctors like to see! Yesterday evening Easton was moving around more frequently and was not looking comfortable, so they decided to give him a muscle relaxer. The problem with him moving is the two cannula's that are taking blood out and back into his body which are very critical to Easton need to be very secured. The fear was that accidentally one of them would come loose with the movement.

This morning they started Easton on Epinephrine which is a medication that helps the heart contract. So far he has responded fabulously to this! His systolic and diastolic blood pressures are now starting to have a little higher of gap between them which is great, it means in a sense his heart is beginning to "wake up." After starting the medication, they did an echo on him. Overall, the results were great. The echo showed that in fact, Eastons heart looks ten times better than it did right out of the OR. His ventricles are contracting, but not quite "snappy" enough if that makes sense. From what the nurse explained to me this morning, when you are on bypass for as long as Easton was, your heart becomes very stiff. Since his ventricles are still a tad tight, it means he just needs a little bit more rest. We are still waiting on the final results, but based on what the echo showed they will most likely keep him on ECMO for just another day or so.


Dr. Canter (the head of the cardiology dept.) just came in and said he is very pleased with how E is doing. Currently his systolic and diastolic blood pressures have a difference of 10ish. So for example, currently his blood pressure is 67/55. That is a great improvement from right after surgery when the difference in the two numbers was only 3-5. Dr. Canter said he would like to see the numbers have a difference of 20, then we will be in fantastic shape.

[nofearengineer]

The poor little guy sure has been through a lot.

I'll pray for someone to cut him some slack already.

He's already proven he's up to the challenge of living.

On another note, while we all complain about doctors from time to time, it's good to have a great one around when you really need them. It sounds like they are really working wonders with Easton.

[joedog]

pro reel, thanks for update. Easton's fought hard and will continue. What a strong young man. He's been through more than most go through in a lifrtime.
Prayers always, and I hope your family is doing well too. I know this is tuff for all of you.

[MississippiBoy]

Man, it's windy in here....I think some dust must've blown into my eyes.
We're still praying for the little guy. I'm with Bryce....ease up, he's already shown how tough he is, leave him alone.
I've mentioned it before, but I'll bring it up again. My wife is a nurse in the largest and best NICU in the state. In case you have any questions about anything, let me know and I'll ask her to see if she can clear anything up for you.

[MIbasser]

Wow, I can't imagine what you and your family are going through. Thoughts and prayers sent you way.

[bcklash]

Little man Easton--ONE TOUGH KID--PRAYERS STILL ON GOING

[nobass]

thats is really good news to hear your going have to give e a nickname like rocky he is really a fighter.

[mike234]

Kevin.
This is really good post-op report. Your physician's decision to let heart rest was a good one I think. Aganist all odds he and his phyisicans are slowly gaining some ground. Easton is a fighter and believe me that is the most important thing. Will to live and the fight he has in him gives him a better chance than most. God be with him and keep prayers coming I know they help critically ill patients. About surgery time just remember how small his body is. It is a nightmare as you can imagine and takes great eye and steady trained hand.
Mike

[MallenManson]

That's some great news, Pro!
Praying for a full recovery.
Easton is gonna be one special kid, for sure

[bluebasser86]

Anxiously awaiting the update when you say that the Dr's say he's good and come home and live a healthy life! Praying for him and your whole family as always!

[WatterBoy]

Praying, praying, praying Kevin. Thanks for the update.

[woody]

Kevin,

Thanks for letting us know about Easton's recent surgery.

Still hoping and praying for all of you.


-Mark

[keithdog]

Thanks for the update Kevin. I know we are all watching every day for any new news you have for us. My pastor wants kept up with Eastons statice too. I have no doubt that God has something special in mind for Easton. His progress is truly an answer to prayer.

[Jrob78]

Praying for Little E every day. He is a fighter and will fight his way through this! I can tell you one thing, when he gets to come home, he's going to be one spoiled little man, and deservedly so!!

[bamabassman]

once again i say loud and clear, GLORY TO GOD and big bad to the bone EASTON AND HIS DOCTORS AND NURSES. kevin, HTANK YOU SO VERY MUCH FOR THE UPDATE. sounds like easton has like everyone else pointed out a fighter and a WINNER. i agree with letting hm rest a bit. he has EARNED it. we will continue to pray fo this big man in a little body (for now) til he is smiling up at all ya'll who didn't give up on him. GOD BLESS !!



now keep the updates coming buddy.

[mike234]

Kevin,
How about a update for today. Want to see if epinephrine(adrenalin) is still helping the ventricles contract fully. Also to see if sys & dia pressures are still coming apart and have reached 20 units apart yet. Should be that much difference if adrenalin is working.
Thanks
Mike

[pro reel]

They took him off ecmo today and he is doing very good. The ventricles are still a little stiff so they put him back on milrinone. They removed the packing from his chect cavity and just covered the open heart with a guaze pad. I have not heard what todays numbers are. I'm at home now and relying on an ocasional update myself.
Thanks

[joedog]

With you pro. Thanks for update.

[WTL]

This is all sounding like pretty good news to me. I'll keep the prayers up for the little guy.

[bamabassman]

yes it does sound good. like i know what is good, not. but it sounds good anyway kevin. still praying buddy.

[1/4 stick]

Praying for his health and long life. Also praying for his mom, dad, and family to have strength, faith, and courage.

[MallenManson]

Glad to hear he's doing better and better!
Try and get a lil rest Pro

[mike234]

Kevin,
MM is right. Get some rest. Can not do best job on reels if overly tired and is to cold to fish for most of us.
Thanks
Mike

[pro reel]

new updates from Brittney for this week.
Monday
Today has been nothing but good news! When I arrived in lil mans room this morning, he was wide awake and in a good mood. I instantly noticed there were a few less medications attached to his IV pole, hooray! Overnight, they turned off his Epinephrine to assist with his heart function, and another medication that helps lower your blood pressure. It feels so nice to walk in the room and be able to visualize the progress Easton is making!

After rounds this morning, they decided it was time to give Easton his feeds back!!! Since his belly has been "asleep" since surgery last Monday, they started out a very low rate of 2 ML an hour. When Easton was a few weeks old, he started having bloody stools and the doctors at CMH blamed it on having a milk protein allergy, although honestly I never quite believed the diagnosis. Instead of starting back on his pharmacy created milk protein free formula called Nutramigin AA, they started Easton on same basic Similac advanced to see how he handles it. This is very exciting to me because I can get Similar at Walmart, instead of having to go to a pharmacy and pick up a prescription of formula when we get to go home! As the day has progressed, they have slowly increased his feeds. Around 8:30 tonight when I left his room, they were up to 7 Ml/ hr and were going to continue to increase them by 2 ML every two hours.

Over the last 48 hours, they have also slowly been weaning the ventilator and the Nitride oxygen that is assisting with fully opening the lungs. We are now on a very low amount of Nitride, and that will continued to be weaned throughout the night and should be turned off around 4am! We can check that off the list. Right after surgery Eastons ventilator settings were 100% oxygen (room air that we breath is 21% oxygen), and a ventilator setting of 60 which is a very high amount of support. When I left tonight, the ventilator was on a rate of 24, and a oxygen amount of 60! Again, we are making tremendous progress with weaning the vent. Now keep in mind, about 1 month ago Easton had a trache put in because we originally thought we were going to be going home on a ventilator until the next surgery which was supposed to be performed around age 1. That surgery is what we had last week. So now the question is, does Easton need a ventilator, a trache, or neither! Easton has something called tracheal and bronchial malation, which is something a child outgrows around age 2-3. The ENT doctors who have scoped him have said that it is only mild, but this alone could be something that will keep us on the vent until he outgrows it. We will just have to see over the next few weeks as we continue to wean things.

I hope tomorrow goes just as well as today, and each day we continue to mark things off of our to-do-before-going-home list quickly!!
Tuesday
Today has been a big day for Easton! We have checked two more things off of our list. This morning they removed the pace maker wires that were put in during the surgery, and removed both of the chest tubes that were draining blood after the operation. As you can imagine, that did not feel so good coming out and Easton cried and was pretty fussy afterwards, but with an extra PO does of Adavan, he quickly fell asleep and has been asleep ever since.

This morning we removed the Nitric breathing machine and now are continuing to wean his ventilator. We have weaned down to a rate of 16 and pressure control of 18. Dr. Canter stoped in the room today and said as long as everything continues to go well, and we successfully come of Milrinone, we will be transfer ed back to CMH next week to work on weaning the vent in preparation to go home!

The IV pole this morning has one less medication, "cya later calcium." Since E has now been getting feeds for 24 hours, they switched back over to his PO doses of calcium through his G-tube. Also, our Dopamine has been weaned from a dose of 6 to a 2, and we are going to continue to wean that throughout the day. Hopefully tonight, or early tomorrow we can say, "see ya later Dopamine."

Unfortunately, yesterday when I mentioned that the doctors here did not believe he had a milk protein allergy.... well we were wrong. Easton did have his first stool this morning, but unfortunately did test positive with having some blood. But hey, at least we can say we tried the new formula! The plan now is to stop his feeds for the rest of the day, let his belly rest, then tomorrow restart his feeds back on his special formula of Nutramigin AA.

I can not say this enought time, thank you so much for everyone who has supported us through our journey. Our journey is not over, but as each day we get closer to arriving home for the first time, my excitement rises each second!

Wednesday
I now have my right hand ONLY thumb sucker back in action! Yes, that is right...get lost ET tube! Easton now has his trache back in and couldn't be happier to have that thumb back, although it took him about two hours to remember how much he loves his thumb. When they took the tube out of his mouth, I tried giving him his pacifier, but he said, "no way get that out of my mouth" I then periodically would take his thumb and place it in his mouth in hopes he would latch on, and slowly it began working! In the last thirty minutes, he has realized how much he loved his right thumb before surgery!

Today we have had a minor set back. The x-ray this morning done before restarting his feeds due to the bloody stools showed that is colon is a little inflamed. Now the question is, what exactly do we do? Currently, the physicians here are having CMH fax over his paperwork that includes the Upper GI that was done on Easton when he was two months old. The next step is to consult a Gastro doctor and get his opinion on the x-ray . Since he is no longer getting fed, we had to stop all of his medicines that are PO (going into his stomach instead of through an IV) and cannot start any new PO meds like Captipril, which was supposed to be started today.

Hopefully, they can make sure everything is alright in his colon and we can start feeds up again this afternoon! I will keep everyone updated.

Thursday
This afternoon we had Eastons first trial off of the ventilator. Unfortunately, this two hour long trial lasted about two minutes. Seconds after removing the ventilator, Easton began going into respiratory distress and having a difficult time breathing. As he got more upset, he began to hold his breath and clamp down, and turned purple. After about ten minutes of letting him calm down once they reconnected the ventilator, he was back to his normal self. Now the question is, why did he have such a difficult time?

Tomorrow they are going to take E to IR and do a ultrasound of his nerves in his diaphragm. One worry the doctors have is that these nerves may have been accidental snipped during his heart surgery, which is something that happens sometimes when there is an abundant amount of scar tissue to dig through. If these nerves were damaged, in fact it paralyzes a portion of the diaphragm, making it difficult to breathe without a ventilator. This possibly could have been why we had such a hard time, or it could be as simple as Easton needs a little bit more time. If in fact, the nerves need repaired, Easton will have yet again another surgery soon. Thankfully, it is a minimal risk and quick operation, with only a few days of recovery time.

So far today Easton has had a great morning. They re-started his feeds this morning at a small rate of 5ML an hour. Due to the bloody stools the last few days, they are going to go very slow with increasing the feeds. Every other day we will increase 5 more ML, so Friday he will be at 10ML an hour. Slow and steady wins the race

Another change today was they took his peep on his ventilator from 6 to 5 which I believe is the lowest your peep level can be, but I could be wrong about that. As long as he continues to tolerate that well, they will be doing some trials off the ventilator this afternoon like I explained in the post from yesterday!!

The biggest change we have to overcome will begin tomorrow... coming off of Milrinone. Since they just began feeding Easton again today, then decided to give him 24 hours of tolerating feeds before they begin to do this, simply because they do not want to give him any meds in his belly quite yet. The plan for tomorrow is to start him on some Catripil (which goes into the stomach), and then wean his Milrinone from .5 to .25. Then Saturday turn the Milrinone off! Unlike all the other medications we have turned off, Milrinone is a big deal to Easton. It is a medication that helps the heart beat a good healthy strong beat, but unfortunately you can not go home on this medication. Before surgery, every time we took Easton off of Milrinone, his heart would suffer greatly. Being off the medication will be the final determining factor if the surgery was a success! If all goes well with the Milrinone, we should be transferring to CMH late next week.

[bcklash]

Thanks Kevin, my rough day is now totally forgotten. Still praying for the little man, but things are looking up. AWESOME.