When we got off the elevator we ran into our heart friends! It was really great seeing them and catching up. Vivian is Ethan's heart friend who has the same condition (Heterotaxy) as Ethan! :) She is so adorable and we loved being able to see them!
We started off the appointment with an echo. It seemed to go well, but she did spend a lot of time focusing on his heart beat pattern and pressures. They didn't mention anything about it though, so apparently things seem to be okay.
Ethan's oxygen saturations maxed out at 63% today. That's definitely getting low on our comfort threshold, so we knew that it was definitely time for an intervention. We discussed reasons why he is that low all the time. The docs are wondering if he maybe has pulmonary vein stenosis (PVS). This is something we'll keep an eye out for, but just don't know yet. We don't think that's really the case, but it's a possibility. I certainly hope not. They also wondered if we should start looking at doing interventions on Ethan's pulmonary veins since they are narrowed. Dr. Z is wondering if we should start that up, but Dr. G is not really wanting to go down that road just yet. He said that once we start messing with those, it'll be a constant battle to keep them open. That'll just add to the difficulties that we're having trying to keep his heart veins open! Just another thing to add to the list of things to keep an eye on. Other thoughts that were thrown around were to have Ethan on oxygen throughout the night and/or start using nitric oxide to try and open his pulmonary veins a bit. We're not going to start that yet, but it's an option for the future.
I let them know about Ethan's headaches worsening especially lately. The night before the first day of school he had one. Since then he's had headaches 4-5 days a week! All of a sudden it just got so much worse! I don't know what the reason is -- maybe waking up earlier in the day, stress from school, or who knows what. We discussed the pros and cons, and decided that it's time to start the headache medicine after all. We filled the prescription and started taking Periactin this evening. I pray this helps him out. This is also the med that has the side effect of increased appetite and weight gain! YAY! He weighs exactly the same as he did last May. He had gained weight, but then lost it all this summer. Hopefully this will make a big difference for him!
Next we discussed what the plans are coming up. We are going to do a heart cath and we are aiming for October to do it. The plan is to go in and see the pulmonary artery where we put the covered stent in last time. We are able to see blood flow in the center of the stent, but the outsides are not clear. We're not sure if Ethan is narrowing around the edges of the stent. He will look at that spot and see what needs to be done to open it up. He also will place a stent in Ethan's SVC. This is the area in his neck that is severely narrowed. The last spot that he mentioned is working on his conduit again. I was under the impression that we weren't going to touch that again after it cracked last time, but apparently I was wrong. The docs are going to look into getting permission to use another covered stent for his conduit. This will be the larger one that we used last time and it is not FDA approved yet. Because of this we have to seek "compassionate care" permission and get approval before acquiring the stent. Because it was an emergency situation last time they placed the covered stent they weren't able to really open it up as much as they wanted. Now they'll go in and open the conduit up more. We just have to pray that we can get the stent approved, as well as the safety for Ethan when placing it.
We are also going to get a lot of bloodwork done. They checked Ethan's liver and it has increased dramatically since our last appointment. It is now greater than 4cm. That is usually a major sign of heart failure, so we are going to check a bunch of levels to see how his heart is doing.
Dr. Z took pictures of Ethan's eye and asked permission to use him as a teaching example for trauma patients who take anticoagulants. Of course I said yes. We also took pictures with Dr. G and Dr. Z :) We love these doctors!
Also...Ethan's wet cough has returned. :( Just last month the doctors were amazed at how great his lungs sounded - the best they've ever heard him! Now we're full force with his vest and all 3 breathing treatment meds. :( Hopefully we can get this to go away, but usually it will stick around till next summer.
On the way out, Ethan spotted the statue of a man made out of metal letters that he loves. We usually walk by it on the other side so we don't see the wall of letters, but this time we were heading up to neurology to get the headache med prescription. He saw this and wanted a picture. :)
All in all it was a very productive day. Hopefully his headaches improve with this medicine, and I hope his appetite improves as well! We ordered new glasses yesterday, so we're waiting for them to come in for both kids. He also has class pictures on Friday so that should be fun. :)
And just for some puppy pictures from this morning. Fiona is growing so quickly and we all love her - but she sure is NAUGHTY! She shredded Callie's homework yesterday, constantly destroys anything and everything she can find, and is apparently not too concerned with being housetrained. :/ She's lucky she's cute and snuggly!
Thanks for all the prayers and support! I'll let you know how things are going and once I hear a date and finalized plans from cardiology.
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