The biopsy of his GI tract went really well and we have some great pictures and information coming from that. Maybe we can finally pinpoint the elusive puking problem.
They’ve given us a couple updates so far. Everything is going well. Evan is successfully on bypass and they are starting the operation part of the surgery. We still have a few hours left.
At each major operation we have taken a picture of Evan and his heart surgeon, Dr. Jennifer Romano. (Click for a larger image)
We gave or hugs and kisses and they took Evan to the OR at about 8:40. He was in a very good mood this morning, lots of playing, talking, and smiles. Dr. Romano expects the surgery to take 4-6 hours and we will get updates about every hour. The GI team will start the operation with a quick biopsy of his esophagus for allergies that we had hoped they could do today but it hadn’t been confirmed with us until this morning.
More updates in a little while. Thanks for thinking of us today. <3
Evan went back for his cath a little after 11. I went back with him to the room to help keep him calm until the sedation kicked in. Usually they give the kids Versed, but instead of making Evan sleepy it makes him energetic so they had to give him some sleepy gas. They pulled out a little mask for Monka and Evan cried a little when he got his mask, but the medicine works so quickly that he really didn’t have time to fight it.
They came and brought us to see him in recovery around 2:30 and he looked well except for being high as a kite. He has an IV in his left hand so that hand is pretty useless as they have it taped to a board. A bandage on his neck and groin – no big deal.
The doctor gave us a nice breakdown of what they saw. Here’s what we learned:
1. Before the procedure, we were told that his heart function (based on the echo) was more depressed than they thought. It looks like there is a region on his ventricle that isn’t squeezing as much as it should. We’ve heard this before and addressed it with meds (mostly upped some Dig). It’s still not the news that we want to hear. After the cath, the doc said that his squeeze is better than expected from the echo, so he has some mild loss of function and his heart works better than they thought. Fantastic news!
2. They were slightly concerned about Evan’s coronary arteries and thought maybe this was the reason his squeeze wasn’t so strong in certain parts of his heart. This wasn’t the case – Awesome news!
3. Before the procedure we were told his leg veins were both occluded due to having so many access lines in the past. This would make it impossible to do the cath through his leg vein, so they would need to find another pathway. You don’t get the exact same type of info going through another pathway, so this was a bit of a bummer to hear. Well, turns out his right leg vein is completely open, so they were able to put a line in his groin and get all the data they wanted. Great!
4. His pulmonary pressure (the pressure in his pulmonary arteries leading deoxygenated blood to the lungs) is 10 (I assume mmHg?). The doc said that Hemi-Fontan kids are usually 8-12, so being 10 is perfect. It is very important for the pressures and resistance to be low in the pulmonary artery. A normal heart actively pumps blood to our lungs (via the right ventricle). Evan’s blood will passively go to his lungs to get oxygen since he lacks a working right ventricle. So if the pressure/resistance is high, it means the blood will not flow well/easily and you will have poor oxygenation. That and a host of other issues. But we don’t have to worry about that because Evan is a perfect candidate!
5. Evan doesn’t appear to have any major collateral vessels, at least nothing they needed to take care of in the cath lab. There are a couple we can keep an eye on, but nothing major. Excellent! Your body is amazing and when you have a blockage or narrowing of a vessel, your body can make collateral vessels to go around the blockage. Sometimes these can be a problem and cause pressure or flow issues, and the docs need to get rid of them, like by putting coils into the collaterals to close them off. But that isn’t the case for Evan.
6. The one semi-bummer thing we learned is that his right pulmonary artery is about 10mm in diameter – which isn’t bummer news at all! That’s actually great. But his left pulmonary artery is only 6 mm in diameter. There is no narrowing – it’s just smaller. There is no pressure difference between the two sides, so that part is also great news. It just means he uses a lot of his right lung when breathing and only about half of his left lung. It will be something to watch out for. But again, he doesn’t have any narrowing (stenosis) and there is no pressure issue, so that part is actually really good news!!
Evan was admitted and we settled into our room at about 5:30. I will spend the night with him here at the hospital and tomorrow morning they will come by around 7:30AM to take him to the pre-op area and get him ready for surgery. It’s going to be a long day for all of us, we expect the surgery to take the better part of the day. We will try to keep everyone updated via Facebook and the website. Please keep Evan, the surgeons, and all of the staff in your thoughts and prayers.
Here are some photos from our stay so far and some additional photos of this sweet boy enjoying the last days of summer.
We did a more “formal” photo shoot of Evan. These were some of the best.
So here we are, 4 short days before Evan finds himself in the operating room once again. It’s hard to believe that nearly 2 years has passed since he was an inpatient at U of M. It feels like it was such a short time ago. I am not ready, I will never be ready.
We have had a wonderful summer full of smiles, playing, parks, fishing, learning, zoos, and growing. He has made a lot of progress with eating and even more with his speech. He’s speaking in short sentences and his vocabulary is growing every day. I was out of town for 2.5 weeks for work and when I returned it was like he was a whole new kid with his speech. In fact, he’s going to “graduate” from speech therapy tomorrow! I’m so proud of this kid.
Something else happened when I came home from this trip… Previously, I would come home and when he saw me, it was like any other day even though he hadn’t seen me for a week or two. This time I came home to a wonderful surprise. He saw me, “dadda!” and ran over to me with open arms, I picked him up and he gave me a great big hug and put his head down in my neck. When I tried to put him down, he clutched me tighter…that boy melted my heart.
The plan for the coming days and weeks…
Tuesday Sept 9th – Pre-op appointments at U of M. An assessment of his health to make sure he’s healthy enough for surgery and probably an echo-cardiogram of his heart.
Wednesday Sept 10th – Heart catheterization and admission to the hospital. They will put a catheter into his blood vessels (probably in his groin) and push it into his heart. They will look at the condition of his heart, its valves, the pressures in the chambers, etc. This will give the surgeon a really good idea what she will have to work with when she gets in there.
Thursday Sept 11th – Evan is scheduled as first case which means that they will come to his room and get him in the morning, generally before 8AM, and prep him for surgery. The surgery is normally a half-day procedure but with Evan’s history and the scar tissue that’s present, Dr. Romano has booked the OR for the entire day. This surgery does require that his heart will be stopped. They will put him on a bypass machine that will pump his blood for him, perform the operation, remove him from bypass, and restart his heart.
Below is a short 2.5 minute video from the Children’s Hospital of Philadelphia that describes the surgery that Evan will be having.
At around the 2 minute mark the doctor describes a situation where fluid builds up around the heart and lungs. Some of this is normal after surgery and it’s mostly this phenomenon that will dictate how long Evan is in the hospital. He will have chest tubes and be taking medicine (diuretics) to drain this fluid from his chest. Once his body stops creating the fluid from the trauma of surgery and it has left his body he will be one step closer to going home. Other milestones that will need to be met… he will need to be tolerating his feedings, his post-op echo and x-rays need to look good, and his pacemaker will need to be interrogated to make sure that it’s working correctly after the surgery. We’re hoping that he will come home after two weeks but the hospital says that it could be as many as six. Once he comes home he is not allowed to return to daycare for 2 weeks to limit his exposure to anything that would cause an infection while he’s still very vulnerable. We can’t pick him up under his arms for at least 6 weeks after surgery to make sure that his sternum and ribs have time to heal and harden.
We’ll be making more frequent updates to the website over the coming days to keep you all informed on what is happening with little Evan. Thank you in advance for your continued love, support, and prayers.
Here are some pictures of him enjoying his summer.
In 1 month Evan will have his 3rd, and hopefully last, open heart surgery. It’s been a long time coming but now that it is close it feels like it’s coming too fast. I feel like I need more time with my little boy. I think you always feel that way with a medically complex child… time is a blessing and a curse and you never know what side it is going to smack you with. You try to be optimistic…. like really this is nothing compared to the Norwood (graphic). But on the other hand it will be complicated. There could always be setbacks. Being an optimist and a realist ready to just cope with what life gives you is hard! Here are some pictures of the day-to-day and Evan’s last cardio appointment at Bronson before surgery (which was really more of a social get-together than anything else because Evan is doing pretty awesome!)
I tried to get my grumpy and moody 3 year old to take photos with me (oops sorry I forgot in 2013) and he wasn’t really having any of it. Ha! All I can say is…. do you think I’ll be strong enough to pick him up like that when he is 15? He’ll be a foolish boy if he thinks I won’t try 😉
Happy 3rd Birthday Evan!!!
Surrounded by friends and family we celebrated Evan’s 3rd birthday at the zoo last weekend. We saw lions, and tigers, and bears…really. Evan’s favorite was the monkeys of course.
I can’t believe how quickly the time has passed. It doesn’t seem like it was that long ago that we were bringing him home for the first time or giving him his first bath (ok, that wasn’t actually his first bath but the video is awesome) or watching him walk across the living room for the first time.
Here are a few pictures from the day…
A way-too-overdue photo update!
20-April-2014: Easter!
11-May-2014: Our first Tigers game together and it was on Mother’s Day!
20-May-2014: Playing at Oshtemo park, a favorite place of ours.
01-June-2014: First time mini golfing. Only lasted about 1/2 way. It was just too hot for the little guy.
22-June-2014: Cousin Jacob gave Evan his old Jeep. It is huge! Evan doesn’t really fit in it or understand the concept of steering, but he will get it in no time I’m sure.
23-June-2014: Evan had a dentist appointment and did awesome! To celebrate, we went bowling for the first time. He had recently been obsessed with bowling, so this was a dream come true. He was super interested for about 8 frames.
26-June-2014: We rented a pontoon and went fishing on Spring Lake. Kind of crummy weather for the day but it was nice to relax!
30-June-2014: Follow-up TECHS study evaluation at UofM. Evan measures pretty average with just a little delay in gross motor, speech and eating, and self-care type activities.
04-July-2014: Fireworks with friends
Random photos from Mar-June 2014 🙂
Today Evan is 2 years and 11 months old! I cannot believe how quickly the time has gone by. I miss baby Evan cuddles and all of the “firsts” but big boy Evan is so much fun.
In my last post I mentioned that the dietitian suggested that we stop his 2 daytime tube feedings and continue the 2 nighttime tube feedings. His eating has improved significantly since then…with a caveat. He eats/drinks much more for my dad and the occupational therapist than he does for Sarah and I. We record what he eats and drinks each day and are amazed at what my dad is able to get him to put down. Sarah and I are lucky to get half to 3/4 of the amount that papa does. We have been keeping tabs on his weight and he seems to be holding pretty steady. Not losing anything, but also not really gaining anything either. We would like to get him a little heavier, he seems much to skinny to us. I don’t bother trying to give him “healthy” things so long as he’s getting the right mix of vegetables, fruit, grains, and protein… bacon, peanut butter, ice cream, and chicken nuggets are all fair game. We’re not “there” yet, we still deal with puking pretty regularly and he isn’t taking enough volume that we can stop his night time feeds but we’re so much closer than we were 6 months ago.
His next surgery is still scheduled for September 11. There haven’t been any changes to that. We will just keep him healthy and nervously count the days (82).
He ate his first full scoop of ice cream this month. When shown all the flavors and asked what kind he wanted, he responded, “brown.” Love that boy! 🙂
Enjoy some pictures from the last month or so.
There isn’t a lot new going on with Evan but I wanted to make a quick post of pictures and this video of him counting to 14. Sarah and I were both pretty surprised the first time he did it, it’s not something that either of us were actively working on. It just goes to show how easily kids can pick up things.
One thing that is new is that we met with a dietitian and they suggested that we stop his 2 daytime feedings, leaving only the two that he gets at night. The rest of his calories we would try to actually feed him! He is doing much better with real food but I’m afraid that he’s not ready for quite this dramatic of a change. He does much better for the therapist than he does for us. On Monday for example, he ate 1.5 chicken nuggets, 1/4 cup of peach oatmeal and a 1/4 cup of applesauce. That’s not bad, but it’s far from the 9 ounces that he gets through the tube. Hopefully this will give him more of an appetite and he will want to eat more. Wish us luck!
Enjoy the video and the pictures…
From the last post, we had a cardiology appointment that went really well but that ended with our doctor letting UofM know we are ready for the Fontan. Ready is a funny concept. All that echos in my head is our surgeon saying how complicated it will be, how instead of booking the OR for a 1/2 day she thinks she will need a full day, how she told us she’s never really seen anything like Evan’s chest before… I get anxious just thinking about it.
We have always been warned that spring is Fontan season, arriving just after cold and flu but just before the glory days of summer. Except for us, it will be a Fontan Fall because Evan’s surgery is scheduled for September 11.
They originally called and told us July 24 which gave me a bunch of ??? in my head. I wasn’t expecting that at all. They wanted to do pre-op stuff the day after his 3rd birthday. I told them no, we aren’t spending another summer in the hospital, and especially after his birthday. If it can’t be soon, have it in the fall.
I am a little annoyed. I wish we could just get it over with. I hate having it looming over us. I am happy we will have a pain-free summer to do whatever we want. We’ve been purposely delaying some therapies and other things like potty training thinking he is going to be laid up soon. Evidently we shouldn’t have listened to anyone and moved ahead with our plans. So now we are going to be aggressive with Evan and hopefully we’ll be able to make a lot of progress with him before September. He is already turning into a little boy. We can no longer call him Buddy or Bubba or even Evy. He will correct us and say, “No, Evan.” He is also extremely polite and will tell us Thank You (or as it sounds – deet doo) all the time.
Anyway, enough with the talk. Here’s some cuteness to end the post.
