Today was the day that I have been having mixed emotions about, I was scheduled to meet with the cardiologist to get the detailed results of Maxwell's echo. The thought of this was both reassuring and nauseating and it reminded me a lot of the feelings that I had while waiting to speak with the doctors about Nick. I was eager to know what we were dealing with but nervous that it would be something really bad.
After crazy traffic and construction I was thankful to find a parking spot quickly (which is why I always try to book my appointments before visiting hours start).
After some pleasantries with the receptionist she informed me that I didn't have an appointment and I must be mistaken. I assured her that I did have a 9am with Dr D and she needed to figure out how to see me pronto if a mix up had occurred. She called back to the nurse and mumbled something that I couldn't hear and then said "apparently you know more then I do around here"
I was seated in a room and within moments the doctor and a bunch of students entered.
This doctor is great and was dressed in jeans and a floral shirt with with her sunglasses still on top of her head, she comes across as human and approachable and doesn't appear to have the I am God complex that many doctors seem to possess.
Clinically what Maxwell has is called Large Secundum Atrial Septal Defect with mild pulmonary valve insufficiency and significant right ventricular volume overload - What an f'n mouthful!
Pretty much he has a big hole in the wall that separates the left and right sides of his heart and because of this blood is able to free flow throughout his heart instead of following the one-way paths that it should take.... this excess blood is what has made his heart enlarged and the non-oxygenated (blue) blood mixing with the oxygen rich (red) blood is what makes his lips, fingernails and around his eyes have a bluish tinge at times.
This alone shouldn't account for his vomiting but they said that its possible that his enlarged heart is pressing on his other organs and so when food/fluid gets in his stomach or if his bowel/bladder is full it could be too much in his little frame and so his body vomits to make room.
There are two ways to perform the surgery that he will need, one is done via catheter and the other is to open his chest wall and perform open heart surgery.
The catheter method can only be done if there is a safe amount of "rim" for the closure to connect too, if the rim is too small then the closure can slip and reopen which could lead to heart failure. In Maxwell's case the bottom rim seems to be sufficient but his top rim is small. The doctor said that if she was doing the surgery she would likely do it via opening his chest but cardiac surgeries are not done at McMaster they are done at Sick Kids in Toronto and so they will make the decision after further examination.
The next step is for us to go to Sick Kids where they will do their own Echo, then Sick Kids and McMaster will video conference and map out a plan of care. They ideally want Maxwell to "be bigger" in size as he is only in the 5% for weight but since this is a struggle they may decide to proceed regardless.
All in all surgery can take place anytime from six months to two years from now depending on scheduling and other variables but Max will be followed closely by the cardiology team and I should "rest assured" that he is in very good hands and he will be monitored by the best both before surgery and after.
We are going to try and continue without the use of diuretics because they can cause weight fluctuations and he will likely be receiving the RSV shot this flu season.
He can do physical activities in very short amounts but must stop if his heart races, he feels dizzy or vomits or if his breathing becomes labored.... a good estimation is about 10 minutes.
The bad part is that we will likely have to cancel our trip up north for Thanksgiving - its quite far from a pediatric hospital should there be a problem and not really worth the risk.
Now we wait for the call from Sick Kids.... waiting waiting and more waiting.
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