He's down to 1/2 liter of oxygen and his sats are hanging in the mid 90's. we like this.
His color is better, his feet and belly are less puffy. We like this a lot.
His chest X-ray looked much improved this morning. We like this a whole, whole lot.
He is also much happier and appears to be more comfortable than he has in months.
Hence, the blurry pics below, as he was cracking up while I rocked him in the recliner trying to take a picture of his goofy smile!
Our happy boy is back! But for how long, and what do we need to do to keep him this way is the million dollar question.
Dr Swanson was very truthful with me this morning, and it really helped me understand why they were so slow to warm to the idea he was in heart failure again.
With the low sats and pulmonary edema, right heart failure is not the typical correlation.
Left heart failure is. And since we know he has a bad pulmonary valve-leading from the right ventricle to the lungs, it wasn't making sense to her. She is sharp, and pretty textbook focused. So, as we chatted, she taught me some new stuff about E's heart.
His right ventricle is bad. With a capital B. BAD.
Bad regurgitation. And it's getting bigger. This is where the left heart issue comes....she feels the size and poor function of the right heart is compressing his left heart causing it problems also-hence, the pulmonary edema. So both of his ventricles are taking a pretty significant hit.
How do we stop/help/fix this problem?
She said he probably needs to go home on Lasix to keep the fluid off his lungs and feet and belly.
Going home on oxygen because the right ventricle will benefit from added oxygenation.
He also may need to go home with either Digoxin or Captopril-Heart drugs-one for squeezing and
One is a pressor. Both? One? Which one? Neither? This is where she will let us form a plan with Dr Kaine when he's in this week.
I appreciated her honesty and once she explained her reasons why she felt this wasn't failure initially, I became way more comfortable with her. Plan for the night is Lasix, food, sleep and listen to Taylor Swift. Hoping In the morning we will have Dr Kaine a part of the team.
My questions to Dr Kaine are so many, I'm not sure I should share them just yet.
But along the lines of "have you treated a Tet repair with a cadaver valve replaced at 5 years show up with regurg this bad 10 months later?"
What was the course of treatment and did they recover?
What do we do, what is your plan?
And ultimately; do you feel we can 'fix' this problem, or is any treatment we do going to be palliative?
I worry we have few options, And one being palliative care.
So I have to ask around and find out if there are other options.
Baby steps for now. I'm okay with baby steps as long as they are headed forward!
Baldy is sleeping comfortably on 4 Sutherland room 4. With an awesome nurse and Bekah as her back up nurse. Cool, dark room, Taylor Swift blaring, Dreamlight Puppy on, a little oxygen, and turn him on his side to sleep if he wakes up.
Will post more when we know
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