Cath review and pictures!

Ethan had his heart cath on Monday. Things went VERY well and we are so relieved! Thank you all for your prayers and support throughout his hospitalization! It means so much to us! Here's the details on all that happened.

Pre-op went very well as usual. Ethan had his Versed to keep him happy and calm before surgery. It definitely did the trick. :) He went to the OR and went on the table at 8:30. He did so well and commented on how "He loved the room." :) The Versed was definitely working LOL! Right before they put the mask on him to put him to sleep he told me he had a secret for me. He said "I love you". It just melted my heart to hear that right then :)

Pre-op snuggles with Daddy

 

Time for Mommy's snuggles!

It took the usual few hours to get access and pressures checked. Then they placed two covered stents in his left pulmonary artery. This is a small collateral artery that is his only connection between his heart and left lung (the bad lung). This is also the part that continually clots off every few months. These covered stents went inside his old stents to hopefully stop any chance of cells growing through the stent and closing off the artery again. We obviously can't lose this artery! Dr. Golden (cath doc) thinks this will really do the job well, but is still concerned about how his cells are going to react on the ends of the stents. He doesn't know if the cells will grow around the ends and try to close off there. We just pray that this isn't going to be the case, but it's definitely something we'll be watching for vigilantly! Dr. G. also pointed out that these stents made 7 for Ethan! He called him "Stentman"LOL. My wallet is filled with all his stent cards! *sigh*

The procedure went very well with no rhythm complications thankfully! I was so worried about that since he's had so many complications with that in the past. They were prepared and waiting with all the medications to get his rhythm in control just in case, but a mom still worries. The cath was over around 3pm. Then they called a little while later from the OR saying that they were having the bleeding issues again. They couldn't get his neck to stop bleeding from where the catheter was inserted. Of course that starts my heart racing since it brought me back to the bleeding mess of last time! They were able to stop it, then they extubated him and the bleeding started again. More pressure was applied for a long time and finally he stopped bleeding and pressure bandages were applied. His total bleed time this round was 1 hour.

Dr. G came out to talk with us after the cath and tell us how it all went. He said he is optimistic about how the stents will work and said they are placed well. He had peeked at the conduit and saw the narrowing around the sides of it. Last cath in September he placed 2 covered stents there. The stents are holding up great, but the artery touching the stent is narrowed already where they meet. He said there's nothing he could do with that since he didn't feel safe at all ballooning that open or placing another stent. It would just crack his conduit again and we'd be in another VERY dangerous situation. He said they do not plan on touching his conduit due to the risk, so the only step left is the open heart surgery to replace that. We have been expecting this surgery for a while now (it was supposed to happen last June and then again last September) so this didn't come as a surprise. He thinks we can hopefully wait until early next winter though before going in to replace that. That will give Ethan more time to grow before placing a bigger conduit in.

He then discussed a new finding with us. For some reason that he couldn't figure out (I say it was God) Dr. G felt the need to measure an area he hadn't looked at in years. He decided to check out the SVC in his neck on his way out after finishing the stent placements. He did some measurements and found out that there is an almost 50% pressure difference in a spot in his SVC! This is huge! The pressures above this spot were much higher than they were supposed to be, and the pressures below were obviously much lower. He thinks this could be the reason for the huge bleeding problems we're having as the caths finish up. There's just too much pressure built up right in his neck there to get the bleeding under control. He said that definitely needs to get taken care of soon, so we'll be having another cath to balloon that area and probably place another stent in the SVC. This next cath will be done in about 3 months he thinks. He didn't feel comfortable taking care of that during the procedure on Monday though. His plan was to be "in and out" to avoid any complications. He always reminds us that he has an amazing track record with caths, and pretty much the only complications he deals with all are with Ethan. :/ We love Dr. G and trust him completely (obviously or we wouldn't have him take care of Ethan his whole life). Ethan is just "one of, if not THE, most complicated case they have" according to his cardiologists. *sigh* Way to be a record-breaker, Ethan. ;) Dr. G basically wanted to have a successful complication-free cath, so thankfully we were basically able to do that this time!

Post-op! Pale, but doing well

 

 

When we saw Ethan post-op he was extubated and resting pretty comfortably. He looked pretty pale, but that's to be expected after what he went through and the blood loss. He didn't need a transfusion thankfully, so his body was able to just recover on its own. He woke up with his typical raw throat from the breathing tube, so he started in on his ice water and popsicles. Recovery went great and the only problem he had were some achiness in his leg, headaches, and nausea. He still is recovering a bit in the nausea department - once he starts eating something he wants to puke it right back up. Thankfully this is getting better each day, but please continue to pray that it goes away completely and he gets back to his great appetite!

He always gets really red, warm, and a bit puffy after his caths for some reason

He had a great recovery - probably the shortest one ever! We had a private room for the first time in a LONG time! I think this really helped him out! He had a very restful night only having to wake up at 4am for his second round of IV antibiotics, at 5am for a chest xray, and one other time for vitals. Much more rest than usual in the hospital! :) He woke up hungry and happy! I was so relieved! He behaved so well in the hospital this time, so that is a huge blessing!

Coloring fun waiting for breakfast

 

Playing some LeapPad games

 

Child life has improved SO much since our last visit! Maybe they're listening to all the survey responses after all! :) Ethan received a gift bag in the recovery room filled with markers, a hat, card games, coloring books, a magic kit, and some other games and activities. It was so nice and so unexpected! They even posted a schedule on the door of our room of the daily group activities in the playroom! This was something I put in each survey that we LOVED at Rainbow, and were so disappointed that the Clinic didn't do. Rainbow is so great about having fun activities and games going to keep the kids happy and entertained. We definitely miss that, but it seems like the Clinic is on the right track! :) YAY!

Finally made it to the playroom :)

 

Don't let the face fool you, he was SO excited to see a tractor to ride!

 

Ethan had an echo Tuesday morning. They weren't able to get a good picture of the new stents unfortunately, even though they scanned for well over an hour! It was frustrating, but hopefully everything is still good! We return for a post-op appointment on March 20th. Hopefully we can get a good picture of the artery then and it's all open and working well.

Echo time

Waiting around for discharge news...took a lot longer than we thought!

Things are going very well. Ethan is taking the week off school to fully recover. He restarted his Lovenox injections (the blood thinner shots into his belly). He has to do these shots twice a day until his INR is in his range (2-2.5). This morning's reading was 1.4, so we still have a little ways to go unfortunately. He HATES these shots, and I totally understand since they hurt terribly! I couldn't stand doing them when I was on them, so I feel awful for him! Hopefully we can get in range quickly and stop the shots soon!

He has kindergarten sign-ups going on now, so we're trying to get all his paperwork together to register for fall. I can't believe he'll be in kindergarten next year! I also have some questions for Dr. G at our next appointment like if he's supposed to skip gym class next year, etc. We also have an upcoming appointment with neurology to assess Ethan. I attended a lecture through our local Mended Little Hearts group with the doctor recently. It was great and really informative, so I'm looking forward to our appointment with him! He discussed all about CHDs affecting kids in ways like ADHD, Autistic characteristics, headaches, etc. He basically described Ethan perfectly during his presentation! We'll see what he has to say and how we can help him for next year being in "big kid school".

And...Ethan tried playing Go Fish (the card game) yesterday for the first time. He loved it, but here's an idea of how the game went.
"Me: Okay, now you have to ask me for a card. Look at your cards and see what you need to make a match."
Ethan: Okay.
Me: So say 'Do you have a 2?'
Ethan: Yes.
Me: No. I mean, you ask me if I have a 2. That way you can get your match.
Ethan. Yes. Here you go. (Proceeds to hand me his card.)
Me: No, you need to ask me for a card. Say, 'Do you have a 2?'
Ethan: Yes.
Me: *sigh* Ask me for a card.
Ethan: Go fish.
Me: Really? "

He did catch on for the most part and enjoyed playing LOL



Silly boy :)

One last thing...Callie just finished fundraising for Hoops for Heart. So many of you donated for this program for the American Heart Association. She submitted a whopping $715! I spoke with her teacher today and she said Callie's donation blew everyone else's out of the water! She is the highest fundraiser of the school by far! :) Thanks so much to everyone!