Ella's bowel study came back today, it was good, no Hirshprungs!! This is great news. On the other hand we had her cardiology appointment today and they do want to go ahead and repair the PDA in her heart. It really isn't too big of a deal, she will even get to come home the same day. Their reasoning for going ahead with the closure is that she has a history of pneumonia and aspirating her liquids, which is hard enough on the lungs, and the PDA circulates extra blood that has just come out right back into the lungs, so closing the hole will help prevent pulmonary hypertension. Also they want to look inside and make sure that everything is okay with her aorta, since it was shown "bulging" into her esophagus during her upper GI study. They did a repeat echo today and said something about her aortic something or another coming in from the left instead of the right, I don't know what they are talking about could have been another language for all I know. Also an open PDA also increases the risk of an infection in the heart which obviously is no good. So, surgery is set for December 3rd. The doctors were great, at the Center for Congenital Heart Defects, so I am not too nervous!
I was asked last week by the Director of Ella's school, Spokane Guilds School and Neuromuscular Center, if I would like to be on the Board of Directors. Of course I said yes. I am super excited about it!! I have a meeting with the Director tomorrow while Ella is in school. I LOVE LOVE LOVE her school!!! Well, I suppose that's it for now, just wanted to update everyone on Ella's medical stuff!!
Happy Belated Down Syndrome Awareness Month
11 months ago
11 comments:
Ella and all of you will be in our prayers Dec. 3. Congratulations on becoming a board member. Guild school is incredible and you will be a great addition to their board. Gramma
That's a good attitude you have about Ella's upcoming surgery...let's get her body healthy and prevent anything worse from happening. I'll be praying it goes smooth and as the date gets closer you still feel calm.
How great your abilities were recognized and honored by giving you a position on the board! How awesome!! You strike me as such a strong leader. You'll do good!
Congrats on the seat on the board! That is going to be great to be in on all the decision making strategies and things! Sounds like the hospital staff has everything under control with Ella's surgery. We were not surprised to hear that they were going to go ahead and close it simply because of the oxygenation issues it can cause. We will definitely be thinking of you all and praying for a great outcome. Kisses and Hugs for everyone--Aunt Tami and family
Well I guess this progress right? It will be good to have Ella at 100% so she doesn't have any long term heart issues. So at what point do the Dr.'s in Texas have to be responsible for not getting it right the first time.
I'm sure Rebecca can give you the heart anatomy lesson on Friday. I think she has the whole thing down. Plus she can give you the skinny on the surgeons since that is where Elliot goes too.
We'll certainly be praying Dec. 3! You have a wonderful perspective in this! It sure is a blessing that they found this stuff, that they're being so careful, and that they're going to take action for what's best for Ella. (Dumb TX doctors...) Hang in there!!
Thanks for the congrats! We put Fairchild on our dreamsheet, but we're pretty sure they're sending us to Cannon. We find out details today...! (FYI, Cannon was not on our dreamsheet...but I guess God knows! It will be closer to my family at least!) :)
Love and miss you guys!
We'll be praying for you guys!!
Love you!
I think Ella is having the same procedure Kayla did to close her PDA ... you mentioned before this wouldn't be open heart surgery but a cardiac catheterization right? If it makes you feel any better it isn't classified as a surgery :) I remember calling it that when I was on the phone with the nurse and she said "well it's not a surgery" I said "what do I call it then?" she said "a procedure!" LOL It actually did make me feel somewhat better to know it wasn't actually surgery!
They go in through the groin and wind that up to the heart where they put a coil in to close it. I can send you the link to my blog post I did when Kayla had this done if you want to see it.
It was outpatient and we left several hours later, however we had to stay in a hotel that night since this was done in Albuquerque which was 3 hrs from home -they didn't want us traveling so far and for Kayla to be sitting in a car seat for that long.
Kayla was really tired and groggy afterwards and she tried to walk but kept falling down and getting pissed LOL
Praying all well go smoothly for Ella!
Congrats on the Board position!
Glad to hear bowl study showed nothing of concern, and that Ella's surgery/procedure is non invasive.
Fix up that pesky little hole and she will be good to go. Not that she isn't on the move now :}
very glad to hear about the no hirschprung's thing. about the heart, they patched g's pda while doing the other repairs also even though the pda was technically closed for the same reasons. it sounds like it's for the best, though i wis you all didn't have to go through it.
congrats on the board position!
Congratulations on the board seat. What a great opportunity to be involved in Ella's school. You'll do great.
I'll keep you in my prayers for Ella's surgery. I know you have family to take care of you and Ella but if you need anything you know where to find me. :)
oh that has to be scary!! i am sure she will do great though~ we will be thinking of her
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