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Evan has been doing pretty good since we’ve come home.  We had an appointment last Friday to have his chest tube stitches removed and although he freaked out, he was fine in the end.

Evan still receives 50% of his nutrition through an overnight tube feeding.  We were giving him formula made with Nutramagen but it really isn’t appropriate for toddlers.  While in-patient, we switched to Complet Pediatric and at first he didn’t tolerate it but then his body took to it and he tolerated it just fine.  It’s still a bunch of chemicals but I do think his body responds to it better.  Except… he started to not tolerate it at night and we aren’t exactly sure why.  His button balloon burst so we had to put in a new one.  Shortly after that he stopped tolerating it and his belly got very big and distended for a couple days.  At first, I was thinking that he might be retaining fluid with an effusion because he also wasn’t peeing a whole lot.  I didn’t see any signs of respiratory distress and he never complained of anything hurting.  After a couple days, it went away and he started peeing more.  Not sure if or how any of that is related.  We ultimately reduced his overnight feed volume and rate and he is back to tolerating it again.  Per the growth chart it says he is above average for weight but below average for height.  Dude has been around 33 lbs and 3′ tall for a long time. We’re trying to fatten this guy up so we need to get as many calories in him as possible!

Yesterday we had our first cardio checkup.   His oxygenation is only 85%.  He was in the low 80s before surgery and I was hoping for the low 90s after surgery.  There is a chance his numbers will improve as his body continues to heal.  He’ll never be 100% oxygenated because he has a fenestration (the blood still mixes a little).  The doctor mentioned that if his numbers don’t improve in 6 months then maybe there is something to look into.  Or maybe this is just where he was at.  I was hoping to have a pink baby with no more blue lips or hands but I guess we’ll have to wait and see.

We did an echo and Dr. Dommer agrees with UofM’s assessment that Evan still has mild to moderate decreased function.  She showed us on the echo where the vast majority of the heart showed some vigorous compression and squeezing and one area that just kind of hung out and sat there.  She said that it looks the same as before and that it is probably related to some localized event at that part of his heart – something that damaged that part and that we can’t seem to get to come back.  The new pacemaker electrode was placed pretty much at that site and that area just doesn’t want to squeeze that hard.  So, the best we can figure is that it isn’t getting worse but it won’t get better.  It’s just how he is.  We were on Digoxin to help with the squeeze and we stopped taking it at UofM and Dr. Dommer agrees to just stop using it.  We’re getting as good of function as we can at this point.

She did also happen to see that there is some fluid in his pleural cavity.  That dang right lung still has an effusion that is a little too much right now.  He also has some fluid in his abdominal cavity (the term is ascites) I think located by his liver.  Dr. Dommer said that for Fontans, during the initial fluid re-balance that some osmotic pressure can cause some fluid to accumulate in the veins in the liver and that this isn’t uncommon but needs to be monitored.  This could also explain why his belly looked distended a few days ago… I wouldn’t be surprised at all if this is related and that they would have found more fluid if we came in when he was bloated.  I knew that wasn’t just a bunch of toots!  Because we mentioned his belly, Dr. Dommer sent us to get an abdominal x-ray just to make sure.  We made an appointment to come back next Wednesday and left cardio to get the x-ray.  Well, after looking at the x-ray, Dr. Dommer stated that he has a “pretty good” amount of fluid around his lungs and our appointment was changed to Monday morning.  We were told to just continue to monitor his breathing to make sure he isn’t under distress.  I’m not sure what will happen Monday – maybe adding another diuretic or  – god forbid – inserting another chest tube to drain it all out.  We know how well that happened last time…  So… that means we would be taking another trip to UofM.

Through it all, he hasn’t really been in any pain, he’s been playing like crazy, and talking nonstop.  I hope we get some good news on Monday.

I also want to take a moment to remember our friends Max and Zealen on their 3rd and 2nd angelversary.  We miss you and think of you often!  Our hearts and prayers are with your families always, and especially today.

I also want to continue to ask for prayers for Brittney who is waiting for a new heart and Charlie who is the toughest 5-month old I’ve ever met.  You can visit Charlie’s facebook page here and you can support the family through t-shirts or  through Go Fund Me.

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More of the same has been happening around here. Just basically waiting for Evan’s drainage to slow down to a level that they think is acceptable.  Evan always has a bit of a pleural effusion because he suffers from congestive heart failure and we manage it at home with diuretics.  Finding the balance of what is normal vs what is still stemming from surgery is tricky.  He was getting Lasix, Aldactone, and Diurel.  Evan got down to below his dry weight (what he weighed when he was admitted) and they thought they dried him out too much and so they removed the Diurel.  This also caused his chest tube drainage to increase, as he is draining fluid instead of peeing it off.  Now his weight is back up so they re-added the Diurel and hope to see his drainage go back down.

His drainage levels are:

9/11 = 460 mL
9/12 = 460 mL
9/13 = 110 mL
9/14 = 78 mL
9/15 = 68 mL
9/16 = 84 mL
9/17 = 85 mL (so far)

Sometimes they don’t look at the output levels in terms of a day (midnight to midnight) and instead calculate based from 7am one day to 7am the following day.  When you look at those numbers, his drainage is more impressive.  It was the jump back up to 110 that made them add more diuretics:

9/11-12 = 740 mL
9/12-13 = 192 mL
9/13-14 = 108 mL
9/14-15 = 80 mL
9/15-16 = 70 mL
9/16-17 = 110 mL
9/17-18 = 45 mL (so far)

We are encouraged to get Evan out of bed and walking around to help squeeze out any pockets of fluid that have built up.  He has 2 chest tubes, one for each lung, and I was thinking that one wasn’t draining nearly as much as the other.  Today they removed his big box that both tubes drained into and split them into two.  We’ll now be able to tell if one lung is dry and potentially get that chest tube removed.  The fluid is looking clear and not milky, so we are feeling more and more confident it isn’t chyle.  The best way to tell is with a high-fat diet, so Evan has been enjoying his fair share of bacon lately.  Or has he says, “Mo macon pees.”

Chest tubes are uncomfortable but honestly he manages it like a champ.  He doesn’t really complain about them hurting and when we are out playing he is all business.  It’s like he doesn’t even notice them in.  He is developing more anxiety, or maybe it is more pronounced when I am here.  I don’t know why his behavior is so different with me than his dad – I don’t think I really treat him different but he cries and whines a lot more when I am around.  Now even when they come to flush his IVs he wants me to hold his hand.  He doesn’t freak out like some kids, but it’s definitely getting worse the longer we stay here.

Here are some photos from Sep 14 – 17.  Thank you again for your continued support!  We honestly couldn’t do it without all of you.

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The first 24 hours after surgery were difficult for Evan and for us. He was not comfortable and not feeling well, It was difficult to see him like that. He was coughing quite a bit and that was really painful. He was on meds for pain but the coughing was definitely too much. I think they give him enough meds to cover nearly all of the pain but not so much to sedate him.

Evan was only in the ICU for about 24 hours before he was moved to the general heart care floor. Since then he has really perked up. He’s certainly not his normal self but he is talking and interacting a lot more. Yesterday the bandage on his incision was removed along with one of three chest tubes, an arterial line in his wrist and an IV in his foot.

Our goals for today and tomorrow are to get him moving a bit more, it would be nice to get him walking around to help get some of the fluids off of his chest. He started eating yesterday and restarted his nighttime tube feeding. He didn’t tolerate the night feeding and hasn’t had a bowel movement yet, so were hoping to see an improvement there over the next day or two. He has a history with chylothorax, so we need to get some fatty food in him and make sure that is not going to be an issue before we would feel comfortable going home. If you recall, chylothorax was the starting point for the massive infection that he had in 2012. That infection caused him to spent an additional 63 days in the hospital that year, we don’t want that to happen again.

Here are a few pictures from the last couple days.

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Nearly everyone remembers where they were on September 11, 2001. I was at work, at a graphic design company, my mom called to tell me that a plane had just hit one of the twin towers, the office was in shock. How many of you will remember where you were on September 11, 2014? I know that I will… September 11, 2014 was the day that my son had the last of three necessary open heart surgeries to make his brave little heart work the best that it possibly can. The end of a very long and difficult journey for him, Sarah, me, and all of the wonderful friends and family that have helped us along the way.

Dr. Romano came to give us the good news, Evan did great during surgery! The scar tissue was not nearly as bad as she was expecting so she was able to get into his chest without too much trouble. She completed the lateral tunnel Fontan procedure which uses a Gore-Tex tube to redirect bloodflow returning to the heart directly to the lungs (click on the image below to see a larger version). Additionally, based on Evan’s latest echo and heart catheterization the team also decided that they needed to place an additional pacemaker lead to improve his heart rhythm. This required a new incision and a new pacemaker with room for a third lead. So far the team is really happy with the new lead placement and how it has improved each beat.

It took about an hour and a half for them to get Evan up to his room, settled, and to let us come back. More great news is that he was breathing just fine on his own so he was extubated before he was even brought to the ICU. He’s very tired and mostly in a bad mood, who can blame him? He came up to the room on about 5 medications for pain, blood pressure, etc. His blood pressure looks great, so I expect that those will be discontinued by morning. They are going to start cutting back on some of the stronger IV pain medication and supplementing with some others that are able to be administered orally or on the general care floor.

Evan still has a long way to go, he has 3 chest tubes for drainage, a line in his foot, wrist, and neck for medications but he’s well on his way.

Thank you for all your kind words, encouragement, and support over the past few years. The outpouring of support has been nothing less than absolutely amazing and we’ll be forever grateful for it. Don’t stop! We’re not out of the hospital yet. 🙂 If you could also cast your net of support over a couple other families that are close to our hearts right now. Brittney is a high school student that had a heart transplant in 2008. Her heart is failing again and she has found herself back on the transplant list. 🙁 The second is a 5 month old baby named Charlie. Charlie has spent his entire life (aside from about 12 hours) in the hospital due primarily to a heart defect called Total Anomalous Pulmonary Venous Return. Both of these wonderful and dedicated families could use your thoughts and prayers.

Here are a handful of pictures of Evan throughout his September 11th.

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Success!

He will be in recovery for another hour or so before they bring him to the ICU and we’re allowed to see him. I’ll post more details later, I just wanted to get this out quickly.

We could not be more happy and proud of our little man, he did really great.