So today was Ethan's 6 month cardiology appointment with Dr. Williams. Ethan did much better today than his last appointment. You could tell he was anxious but at least he wasn't screaming and hysterical like last time.
As usual, Ethan had a chest x-ray and an EKG done. Both looked good. He also had his vital signs checked which also were good. His oxygen levels are dropping a little bit and were 78-80% at this visit. Dr. Williams said that this is still OK as long as he doesn't drop below 75%. We also checked his height and weight which were 37 inches long and 26.5 pounds. What all this means is that Dr. Williams feels Ethan won't make it through the winter without needing the next surgery (the Fontan), but feels that we still have a couple of months to try and get him to gain weight. He will submit the paperwork to have Ethan's Echo and Cardiac Cath done in September and depending on the results, we will plan his surgery for October/November before RSV season hits.
I am not quite sure how I feel about all of this. I held it together pretty well at office but got anxious and tearful on the ride home when I had a little time to process everything. I hate looking this close into the eyes of another surgery. Especially where Ethan is very aware of everything happening to him. Also, Ethan's surgeon , Dr. Hawkins, is no longer working due to personal issues. There are 3 other surgeons but we only know personally of one of them. Of course we were told that they are all competent to perform this next surgery. We were also told that we could request one if we wanted, but I am unsure of what to do at this point. Anyway, start sending your prayers our way. As always, we can always use them for comfort and guidance.
Also, if any of you have any great ways to fatten up a very picky eater (and not the rest of us), please give me suggestions. Our MD says every pound counts, so I have at least 2 months to try and butter him up.
---Allison
6 comments:
That's great news that he's doing so well, but just hearing you mention that you're gearing up for the Fontan makes me anxious for you and Ethan. The only good thing about it is that once get this one over with it will no longer be looming out there and hopefully he won't have another one for a very long time.
If you can't decide which surgeon to pick, we LOVE Dr. Kaza. He is definitely the most personable of all the surgeon's and he is so caring. He came to PCMC from Boston. He's my recommendation, but Kouretas and Birch are great too.
Good luck!
I'm glad that he is doing pretty well but sorry to hear that he will be doing through another surgery this fall. I hope all goes well, we will keep your family in our prayers.
I'm probably the last person that should be giving advice on how to fatten up your kiddo since mine are scrawny but my ped told me to put Carnation instant breakfasts in Emily's milk to add a few extra calories without having to have them eat more. Just an idea.
Ice cream works well to fatten me up, maybe you could try it with Ethan! Alex is such a fussy eater too, that if he wants chocolate for breakfast, unfortunately, sometimes... he gets it!:)
I am anxious for you guys, we all have that awful thought of surgery in the back of our minds, but when it gets close to becoming a reality, the anxiety really starts!
We too had Hawkins for the 1st surgery. When we were told that we'd get Kaza for the second, I naturally threw a fit (sort of) because we did't know him, so Hawkins and Kaza did his Glenn. I was so impressed with Kaza! I am happy to let him do Alex's Fontan. His bedside manner is great and he's very attentive. He checked on Alex at least 3 times a day if not more while he was there. He's very caring, gifted and personable. (nurse to nurse, that means a lot;))
Our thoughts a prayers are with you guys. You will be glad to have it done before nasty RSV/Swine Flu season starts too!
We moved to Kaysville, so we keep checking your blog since we can't drive by anymore! Best of luck!
Al, my stomach seriously twists in knots thinking of all you've done, and are doing. I really liked Dr Burch, but I have also heard terrific things about Kaza as well. You should talk with a nutritionist from Primary (I can give you the number for ours, and I don't think they charge you) anyway, talk to them about the fat that you can add to liquid. They said that it was tasteless, and that you just added it to their formula, or the Pediasure. It was basically just pure calories.
Oh how I miss you. I am still so mad that we couldn't get together. I pray for our Ethan's every night and think of you often. I work the next few weekends so that makes it hard to leave the "crew" during the week. Maybe before Ethan's surgery??? He looks so old to me and so healthy! Hopefully that continues, even through the surgery. Love ya, Jody
Hi there, thats good news you have months until #3. I feel so much for you guys, because I know your at the point where we will be soon enough, Ethan is such a cute little guy. Chunking them up is so hard, Kylie is also a picky eater. Mac-n-cheese is all I can get her to eat thats fattening.
We had Dr Kouretous (spl) he was a great surgeon, but robot like. Dr Kaza seems like a great surgeon so either or, sorry about the leaving of Dr Hakins.
Just wanted to let you know we are thinking about you guys.
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