Super-Hero

Ethan is hanging in there. This surgery was a lot HARDER on him than we expected. I talked with a few people who have had these procedures and they said it was rough. But most did not have ALL the procedures at once. The staff keeps reminding me that he will be much better soon, but that he was not in the best "place" going into the surgery. He was looking a lot better the morning of surgery, but he has been fighting for his life the past few weeks. Although he has made many improvements, he was not out of the woods going into it. Thus the recovery is going to be harder on him.

Don't worry, he is doing well. Ethan just came back from the OR in TONS OF PAIN and looking like he had been in the ring with Rocky. He is so tolerant of his sedation and pain meds that they had to majorly increase them after surgery. So today they decided they are not making any changes. They want to keep him sedated and comfortable. If all goes well they will start feeding him tomorrow and trying to wean the sedation and ventilator. I am not in a hurry though. I want his pain to be under control before we push him too much. He has been through too much, and he is still fighting. . . what can I say. . . He is my super-hero!

Much love-
Heidi

Surgery Went Well

Ethan got back from surgery around 4pm. It started late and took twice as long as planned, but went well. Ethan did great, it just took longer to perform the procedures than planned. Since they were working on two sides of his chest and his back, there was a lot of moving involved. They have to re-prep and sterilize him every time they move him. He had scar tissue cleaned out of his pleural spaces, new chest tubes placed, a thoracic duct ligation, chemical pleuraldesis, and a new central line placed. (You can google any of those procedures listed above if you would like more details :) It will take up to 48 hours to really tell if the procedures are helping.

This surgery is nothing in comparison to his heart surgeries, but he sure looked banged up when they brought him back. It is never easy to see. But the funniest part about seeing him after ALL his surgeries is Greg. Daddy asks the same question EVERY time, "When can he get his foley catheter out?" (for those fortunate enough to not have experienced one, it is the catheter put into his pee-pee to collect his urine AND is the LAST thing anybody is concerned about. . .except daddy of course).

Thank you for your words of encouragement!

HMMMMM

I am so torn. Ethan's drainage has picked up a little more today. His right chest tube is not draining, but is now showing signs of fluid build up compressing his right lung. The doctors have given us two options. Since he is definately slowing, we could just place new chest tubes to allow for better drainage and wait it out. He will still not get real food during this period and it could take AWHILE!

Or we can go to surgery as planned before. It will take his body a few days to recover, and it will be a bit painful for him. . . but they won't leave the Operating room until they have all the fluid build up out of his lungs. That means his lungs will be able to fully expand and hopefully after about a 48 hour recovery he should be able get off the ventilator and start getting fed. (Hopefully)

We don't want to put him through anything too invasive again, but we have decided on surgery. He has had this leaky lung problem in some way or another since he was 27 weeks in utero! We are so over it. Not that it is a sure thing, but we are willing to try it.
Thanks for the continued love and prayers-
Heidi

Drainage Has Slowed. . . Again!

We are very hopeful right now. Ethan decreased his chest tube output to an average of 10mL an hour starting at 1am. They are doing chest x-rays every 6 hours. The most recent one at noon shows no new build up in the pleural spaces. The surgeries tomorrow have been put on HOLD. We are hoping Ethan is truly getting his "leaky lungs" under control all by himself! Since they are not having to give Ethan so much fluid to make up for the drainage, we are hoping his body will now be in a position to heal and move forward. Greg and I are overwhelmed with gratitude right now. If the output picks back up they may still do the surgery Monday.

Greg has become EXTREMELY protective of his little baby boy these past two weeks. Greg asked me not to post pictures of Ethan in his current condition. He has hardly left his side and has continued to pray, fast, and be optimistic. His attitude has carried Ethan and me through this time, as well as the prayers and faith of all of you.
Thank you-
Heidi

Contemplating

Ethan had another stable day. No real progress forward, but stable. We are grateful. Ethan's chest tube output continued to pick up. He is at 440 mL right now with two hours to go for the day. That is 200 less than yesterday though! The surgeon talked to us tonight about the procedures. He wants Greg and I to sleep (and pray) on what we talked about and make a final decision tomorrow. Ethan has struggled with pleural space effusions since he was in utero. The feeling the surgeon is having is to do BOTH procedures: chemical pleuraldesis and a thoracic duct ligation on Sunday morning. Poor little guy! But we feel it is time. It is going to be hard for him to progress if we don't get this problem under control. We just hope his body and heart can handle another surgery.
Love and Thanks-
Greg and Heidi

NO NEW TUBES

Ethan had a steady night. The drainage from his tubes picked up
a little bit! That is great. That means the tubes are not clogged
and that his production is slowing down. It's been a rough 10 days
for Ethan, so no one is getting too excited yet. We are holding are
breath and hoping he doesn't start dumping fluid again. But
yesterday was the first day in 10 days that he didn't get WORSE!
Keep the prayers coming.

Much love-
Heidi

Holding Steady

Chest tube has only drained 30mL since 3pm. We are shocked and worried and hopeful all at the same time. The x-ray at 6pm showed some fluid build up on the left side, but nothing like we were expecting. Ethan had dumped over 600mL up until 3pm. Since the x-ray his vital signs are steady. So we go into the night praying his body is really slowing down production and he can tolerate these changes and hoping the fluid doesn't continue to build up and cause problems. I will post in the morning and let you know how the night went. I hope it doesn't involve new chest tubes!

Update

I have been told I need to post twice a day while Ethan is in this condition. Thank you for your love and concern dear friends. For those of you who don't need that much info you don't have to read every update!
Ethan has been about the same as yesterday afternoon. Still on lots of sedation meds and still getting blood products and fluid to keep his Blood Pressure up. They also added dopamine back to the tree of life (our medicine tree)! Unfortunately he was still dumping a ton of fluid out his chest tubes until 2 hours ago. So now a new chest x-ray has been ordered to determine if the tube is clogged and he needs new ones (which would not be easy on him in his state) or a MIRACLE has happened and he is slowing down his output! I will post later tonight the outcomes of the evening.
Think Positive!

Roller coaster ride

Ethan gave us another roller coaster ride during the night. He was not in a good place from about 3am to 10am this morning. But he is much better now. His blood pressure was dangerously low and his extremities were not getting perfused well. Not to mention his oxygen saturations were down again. His sats always drop when his BP is low. They have been giving Ethan blood products and fluids to help balance out all the fluid loss from his chest tube. But by midnight last night he had almost 700mL out for the day. And the chase began. They could not give him fluids fast enough to keep his blood pressure up, and his body started shutting down.

We really appreciate our nurse and docs today. They kept focused on Ethan's core problems even though I was stressing about ALL sorts of stuff. They stayed the course and he is doing much better. But definately not out of the woods yet. I mentioned they stopped feeding him yesterday. His chylous fluid seems to have decreased. However he still is having a LOT of output from his chest tube today. This is because Ethan did his usual. The more blood products/fluid they gave him. . .The more fluid he sent to his lungs (& the rest of his body. He is Puffy!). So alot of the fluid they have been giving him has shifted to his lungs and poured out his chest tube. So we feel once the blood pressure problem is under control then his chest tube output will decrease drastically.

Also, Ethan was given the tPA today (clot buster). It ran over six hours. The venous ultrasound afterward show a patent and open vein (NO CLOT that they could see). I am so grateful! I ran around giving high fives when I got that news. One sweet doctor replied to my celebration by simply saying "It is just good to see a smile on your face mom". It was a good feeling.

We have had soooo much support today. Thank you for all the love and prayers. And thank you my heart friends. I cherish and admire you beyond words!
Love-
Heidi

Busy Bee

Ethan continues to keep the staff busy. At least they have been really good about giving Ethan nurses that know him and adore him. They are great to Greg and I also. So it was another day, another new chest tube, another new art line, and even more chylous output. We passed the 600mL mark in this 24 hours!
Greg and I had a "team" meeting with the docs and nurse practitioners this afternoon. We wanted to make sure everyone was on the same page and going in a direction Greg and I were comfortable with. It was a good meeting.

They decided to put in a chest tube on his right side. He has had fluid on that side for over a week, but not a lot. They finally decided it wasn't going away and it wouldn't hurt to get rid of it. They have stopped feeding him through his abdomen and are only going to feed him via his IV's. Trying to eliminate ALL the fat he is getting. He is also getting constant blood products. They are to help replace everything he is dumping out in his chest tube. If stopping the feeds doesn't decrease his chest tube output drastically with in the next few days, then he will get a procedure this weekend or Monday to try and stop it.

Ethan is also going to get a big dose of tPA tomorrow. It is a potent blood thinner/clot dissolver. They are hoping to rid his clots. It has potential to cause internal bleeding and or bleeding from all his incisions. Please pray it works and doesn't cause more problems.

The good news is they are going to start trying to wean him off the ventilator tomorrow if he stays stable tonight. Oh how bad Greg and I want to see that tube out of his mouth and hold him again.
Thanks for the love-
Heidi

Stressed Out!

I should not be posting right now because I am a stress case. It seems everytime you dig deeper to find an answer to a problem, you discover other problems. Ethan went to cath lab today. It was pretty successful, but didn't answer ALL the questions. Our cardiologists is always so good to take us back in the cath lab and show us all the films from the procedures.

First, there was a LARGE collateral vein. The doctor put in two coils to collapse it. Done deal (unless new collaterals grow). Collaterals are kind of like varicose veins off the heart. Ethan had this collateral before surgery, but it was tiny. The pressure changes from the new circulation made it grow 4 times larger. Second, they did an angioplasty (balloon) to his left pulmonary artery (PA). The PA had scar tissue narrowing and a kink where the sano shunt had been attached to it from the first surgery. The balloon opened the artery wider, but didn't totally get rid of the kink/angle. But it definately looked better. Hopefully we won't have to go in later for a stent. The third issue (and one currently stressing me out) is blood clots. He has one large and two small clots in major veins going into his glenn circulation. The doc was able to do a thrombectomy on the largest one, and it is GONE. He could not get the two smaller ones though. The positioning wasn't working. Saturday they suspected one small clot and started blood thinners. So Ethan will stay on the blood thinners until they (hopefully) go away.

Removal of the large clot, opening the PA, and closing off the collateral should help oxygen saturations, and may help a little with the effusions. But there was no smoking gun for the large increase in his effusions this past week. The things they found were definately issues that needed to be resolved. But they were not causing really high pressures like one might think. And really high pressures would be a cause for large effusions. So he will remain intubated for a day or two more until we decide if we need to go to surgery to try a procedure to resolve his effusion. UGH! I feel so bad for him. I just wish he could be a BABY!

Is There Such Thing as Textbook?

Ethan likes to be snuggled by all his beanie babies (stuffed animals) when he sleeps, and he loves to grab anyones fingers! That is the Respiratory techs hand.

Ethan is not following the rules. . . What's new! He is still intubated. His vent settings are quite low, and his oxygenation has gotten progressively better. He is in a safe range, but not as high as he was after the surgery. Also, his chylous output is up to 400 ml in a 24 hour period. Yes, that is quadruple what he was 10 days ago, before he had all the setbacks.

Ethan had a lung CT on Saturday (he was not able to get a cardiac one). There was a few things on there that they were expecting to see, but nothing to explain his setbacks. So we are on to cath tomorrow around noon. They will go in through his groin, up to his heart and measure the pressures and look for collateral veins that could be causing his O2 to be down and chylous effusions to be up. If they find collaterals (which they think they will) they will put coils in the veins and collapse them.

So as of right now, the thoughts are that the infection mixed with pressure/oxygen changes related to collateral vein growth off the heart, are what has caused Ethan's struggles. The infection seems to have resolved, now we are hoping for a successful experience in cath lab tomorrow.

On another note, I want to say HAPPY FATHER'S DAY to my dad, Greg's dad, and to Greg. I have seen the pain and frustration in Greg's face this week as he has watched Ethan suffer. He has been so tender toward Ethan. I know this week has just killed Greg inside, yet all that comes out of his mouth is positive words of gratitude and praise. His attitude is one in a million, and exactly what our family needs during this time of trials. I love and appreciate you immensely!

Much love-
Heidi

A little more progress

After waiting all day to go for the CT scan, they decided not to do it. His surgeon feels he is heading in the right direction now. Ethan will still get a scan in the next couple of days, but he thought it will give us a better picture of how his heart and lungs are doing if things don't looked obscured from the infection. If his infection was still causing trouble the CT could give insight to that, but since its not they will wait and then get a scan that will be able to focus more on his pleural spaces and help them make some decisions on how to move forward with his "original" lung issues(effusions) and collaterals. I am extremely tired and have no idea if that makes sense. . . but thats the plan.

Ethan is OFF the nitric! They want to wean him off the vent by tomorrow. However we have a small problemo. . . his effusion on his right side is growing. Bummer. So they will try to wean the settings, but he may need a right chest tube tomorrow if his diuretics don't reduce it soon. Thus he may not tolerate being weaned all the way off til that problem is better. The other bummer is the ouput/chylous from his left chest tube has DOUBLED today. Where is this stuff coming from?!#*?

But overall one thing is for certain, Greg and I have been graced with Ethan's presence for another day. . . for that our family is grateful. I am learning to enjoy life a day at a time!

One last note-
I am so blessed to have an amazing husband/father at my side every step of the way. . . Happy 10th babe!

Progress

Ethan had a great night and morning. Other than the fact that he wakes up through his sedation and wants to rip the breathing tube out of his mouth. . .At least he is fisty! We like that. His ventilator support is half of what it was yesterday morning and the nitric is on 3. He should be off the nitric by this afternoon and the plan is to go to CT this afternoon. Also his white blood cell count is down to 16,000. All great news. He is heading in the right direction. I will post when we have results of the CT scan. That will tell us more how his lungs are doing.
LOL-
Heidi

10+ steps back

I am not quite sure where to start. It has been an extremely rough 36 hours. Since I posted last, Ethan went downhill. I will give details, but I want to state first the he is stable now and his white blood cell count is going down! Thanks for the extra prayers.

The docs were working all day yesterday trying to find the source of infection. Ethan's left chest tube abruptly stopped draining yesterday morning and the site was looking red. They decided to pull it out. They knew it probably wasn't the main problem, but it was definately not looking good. His lung collapsed upon removal. He was already teetering on the verge of respiratory distress, but this made it official. He was intubated and his lung reflated. However, he was needing FULL ventilator support and his sats weren't good. The chest x-ray showed what was looking like pneumonia (most likely THE INFECTION).

So between pneumonia, pleural effusions, and being on the ventilator his lungs were having very high "resistence" or high pressures. And as previously mentioned, the new glenn circulation they created in surgery is based on low resistence in the lungs. Thus, his new circulation was not working. So after still having very low oxygenation after being intubated, they had to also put him on nitric gas. This helps lower the resistance in the lungs so blood can get in there to be oxygenated.

He finally stablized around 9pm. By 4am the party was over. He went downhill again. Ethan had low blood pressure during the night and they gave him fluids. And as Ethan always does, he soaked it up in his lungs
and his effusions got really bad. His oxygenation was in the 50's off and on all morning. And they couldn't get it up. He was not looking good. That is when I finally lost it! Greg came in and we were preparing for the worst.
The whole team went to work on him after they got him somewhat stable. They put in central and arterial lines again, ran lots of tests, started a whole lot of meds, and put in a chest tube. He is now very stable. They wanted to take him for a CT scan of his lungs, but that will wait til tomorrow. Right now they want to slowly wean him off the nitric and high ventilator settings They don't want to rock the boat any more today. Sorry for all the details, but I have had many texts requesting to know.
The most amazing thing happened though. They checked his arterial blood gases during all of this. This shows how his core system is doing. The docs expected it to be bad. . . and it was GOOD! His guardian angels were over him today!
Unfortunately, he looks like he just came out of surgery again. YUK!

I was hoping by today to post no news or good news, but unfortunately
Ethan has been struggling for the last two days. Monday his oxygenation started decreasing and he was struggling with what appeared to be abdominal pain. His white blood cell count was also elevated (sign of infection), but he had no fever. All the tests were coming back fine. Today he is continuing to struggle. His oxygens sats are even lower and his white blood cell count is really HIGH! He spiked a fever last night. They have tested everything they can think of. About half the results have comeback so far and they are negative.

Ethan has been on antibiotics since last night but has continued to struggle with breathing. His chest and abdonminal x-rays look good. They also looked at his heart today. The function looks good, but there is a little bit of concern over a small collateral vessel that might be decreasing the amount of blood flowing to his lungs. But they say that is not the main problem. They will watch it closely though. They think the supposed infection is the true cause of his respiratory distress and lower oxygenation. I guess what all this means is PRAYERS PLEASE!

Slow and Steady

First things first. . . I HATE head IV's. . .but other than that there is
nothing too exciting to post. . . which is good news in and of itself! Ethan had no major setbacks after his last big day of progression. He is still on oxygen, but it is slowly getting weaned down. His left chest tube is still in. The output from the chest tube was getting lower by the day. As soon as they started talking about pulling it out, the output picked up. I guess Ethan is not quite ready to part with it yet. Not worried about it. The time will come. He has been struggling with withdrawls (narcotics were used to keep him sedated post-op and while he was on the ventilator). It is hard to keep the drugs all balanced. You know it takes drugs to get him off the other drugs! At least we can hold him more freely now. . . He has way less "stuff" attached to him now.

Again I have to say how grateful I am to just be where we are. Post Glenn and stable! It has been a HUGE TEAM effort to get Ethan this far. Greg and I often reflect on how blessed we have been and by sooooo many. And we have had lots of visitors this week. Its been nice. We also got some family time in. With Ethan quite stable, we had grandma come watch him while Greg and I both went to the kids first swim meet. It was good times.

Greg brought the boys by tonight on the way to the D-backs game. Cannon looked at us in all sincerity and asked; "Can Efin come to the game with us?" It was so cute. In the one picture Cannon has on gloves and was playing doctor with Ethan. Gage is so cute everytime he comes. He asks lots of questions. Not annoying little kid questions. But very observant ones. He always looks around the room and comments on whats new, whats gone, and on how good Ethan looks. Love those boys!

Too Much

So after posting about slow quiet progress. . .Ethan had a big day. He got his right chest tube, art line, and pacing wires pulled out today. His oxygen was lowered significantly, physical therapy was performed, and Mom and Dad got to hold him! Now that is a good day. However, I suspect a rough day tomorrow because with all these steps forward has to come a step back, right?!*#!

Quiet Progress

Ethan has had a quiet few days. We will take it. It seems to be so slow, but its what he needs. His chest x-rays (lungs) are looking a little better everday. His chest tubes are draining, but not tons. He is still on high flow oxygen and has too many "things" attached to him for my liking. But he is nice and stable. I don't have it in me to have high stress days again. We had sooooo many after the first surgery. I will take a slow and steady recovery!

Extubated (again!)

Ethan got extubated this morning. So far so good. His x-ray still isn't the prettiest so they put him on high flow through the nasal cannula to help with the transition. They had to lower his sedation and wake him up to extubate. I was nervous about this because when they did it the day of surgery he was in obvious pain. But today when he woke up he looked GREAT! He opened his eyes and was looking at me and reaching for me. Then he started looking around, scissor kicking, and trying to coo. Oh it made my day!!! I just pray he can avoid the breathing tube again. From here on out it will just be a waiting game. It will take a couple of weeks for his lung issues to resolve. There will be ups and downs, but hopefully not too many complications come about during this time period.
Loves and Thanks-
Heidi

One Word: Chylous!!!

These are the latest pictures of Ethan. . . The two are from pre-op before they wheeled him away. Love the arms blocking his face just as I said "smile". He is such a guy. The first one is right after surgery.

Ugh. . . They are back! At least they came early and were caught early. For those that don't remember, chylous is the fat his lymph system absorbs and then dumps into his pleural spaces. So we are onto the nasty, low fat formula again. So once again I am appreciating the G-tube. At least he doesn't have to drink it orally.

Unfortunately his right chest tube isn't draining well (did I mention I HATE chest tubes). Its a relationship of can't live with them, can't live without them (literally). They have tried repositioning him to get it to drain. We'll see if that works.

The docs don't want to extubate (take breathing tube out) until they get more fluid off his right pleural space. His oxygenation is struggling a bit and they think thats why. Hopefully we can get extubated tomorrow. Another we'll see!
On a very happy note an eccho was done today and Ethan's heart function looks really good. That is the most important thing right now. The effussions we can fix/control within a matter of time. Heart function. . .not such an easy fix. So for this news we are extremely grateful. His heart seems to have tolerated the transition to the Glenn circulation!

Setbacks

Ethan is not ridding his excess fluid well. His lungs are wet
and the effusions have arrived. Unfortunately he is now
re-intubated and has a right chest tube to go with the left one
they placed in the OR. I knew it was coming, but it still hurts so
bad to see him go through this. A least that can dope him up
tonight! He will be in less pain :)

Doing Good

I know its time to update when I am getting lots of texts! Ethan is doing much better than I expected. He is following a great post-operative course. The great news is he got extubated a few hours after surgery(breathing tube out). He is breathing well on his own. We thought it would take a few days because he had his trache removed only two and a half weeks ago. This surgery creates a lot of swelling of the head and neck, so we thought the extra inflammation from the trache area would make it worse. So far so good! Of course, it is still a balancing act. His blood pressure has been low from blood loss, thus he has had a few transfusions. The inside of his lungs are wet (also typical from surgery and bypass) so he is breathing a bit hard, but NO EFFUSSIONS yet. . .
The hardest part is he is having a lot of pain and aggitation. As mentioned before the new circulation creates swelling in the head and neck for a few weeks. Thus Ethan is experiencing migraine like headaches mixed with irritation from coming off the anasthesia, mixed with the fact he had his chest split open less than 24 hours ago. And they have to keep his pain meds a little on the lighter side so he will continue to breathe well. So today we are trying to keep it quiet, comfortable, and start increasing his diuretics to help decreasing swelling and fluid on his lungs. They are also going to start feeding him. . .So hopefully the chylous effusions don't come back in the next week!!!
Much love-
Heidi
PS: Greg took the camera home so I will post pics later

Surgery went well

Ethan is out of surgery and doing as well as can be expected.
Still Fragile, will update later. Thanks for the love and
prayers!

Tomorrow is the Big Day

Ethan's Big Day is tomorrow. He will be having the second open heart surgery in the series of three. This one is referred to as the Glenn. It should be much easier on him than the first and his heart will be much more STABLE than now. But it is still open heart and he will be put on bypass again. It has been a joy to have him doing so well and to have him home. We have had many scary days lately, but we have also had many days where he is doing great. Hopefully those scary days will go by the wayside once he is recovered from this next surgery. Some babies can be recovered from this operation in a week. However, the docs know Ethan and his lungs, and have told to us to plan on a month in the hospital! Yuck!
He has come so far and is such a little miracle to us. We have appreciated him and this journey we have been on (However, I would not want to ever do this again). We have been blessed by all of your prayers and are especially grateful for those who participated in the fast last Thursday. We experienced answers to prayers that day!
Much love-
Greg and Heidi
PS: I will be posting more frequent updates again through this hospitalization :)