Calm Waters
An update is in order. Thankfully, things have been relatively calm since we returned from St. Louis. I desperately needed a break from being consumed with all things "Jack". It's not to say that Jack still doesn't consume most my time, but I'm at least able to focus on something other than Jack when I'm not at home -- like work, for example!
Jack is doing okay. He's requiring tons of suctioning, which is really making it hard to leave his side for any length of time. His secretions are thin and clear - it's like we are suctioning water out of him. The thought that comes to my mind is that it could be related to his decreased heart function. I know when adults are in heart failure, their lungs are "wet". I'm wondering if the same thing is going on with Jack? I was talking with my doctor friend (the founder of Cure CMD and an expert in all things muscular dystrophy related) today and she agreed that there might be a connection between the low heart function and the watery secretions. The other thing we talked about was whether Jack's decline in cardiac function is not a progression of his disease but rather the result of some event from the last several months. The cardiac event that happened his second night in the PICU comes to mind. At the end of the day, it doesn't really matter, but you can't help but wonder. I also emailed Jack's former pulmonologist and asked her about the connection between the heart and secretions and I'm waiting to get her thoughts. I'm going to be really bummed if the copious secretions and non-stop suctioning are another part of Jack's new normal.
I received a phone call from the St. Louis cardiologist's office today asking what Jack's blood pressure has been running. I'm very impressed that they are following up and staying on top of things. Jack's blood pressure has been running 80/56-60. Low, but not unexpected because we know the heart medicine he is on (Enalapril) causes low blood pressure. The cardiologist told me that if it gets below 80/40, I'm not to give the nighttime dose. As you can imagine, having a blood pressure that low makes for a very "blah" Jack. You have a kid who went from being on zero meds to being on four meds 2x a day. I understand medications are necessary especially when they keep the UTIs and kidney stones at bay and keep your heart pumping, but the fact is, there isn't a single drug that doesn't have side effects and Jack is being bombarded with side effects from four different drugs. No wonder he feels like crap.
I suppose most people who see Jack wouldn't really notice any change. After all, it wasn't as if Jack was out running marathons before the events of this year. The difference is Jack's sparkle - it isn't quite as bright these days. Nevertheless, he's not in pain and he's not requiring bagging every day and that is a good thing. All we can do is take it one day at a time. We just keep swimming and right about now, we are enjoying the calm waters.
Jack and mom
Yes, I'm as tired as I look. It's time for me to put on my running shoes, get out of the house and start pounding the pavement again. Exercise is the best way for me to re-energize.
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And, on a completely different note, what about them STL CARDS! (I don't even like baseball, but it's hard not to get caught up in the hype, especially when you have so many St. Louis friends.) Go Cardinals! :)
That's the update from here. Thanks for checking in. ♥
8 comments:
ugh, sorry to drag your head back to the meds and even add conjecture to your already confusing situation...my thinking is that since the extra secretions are recent it might not be due to the heart since if that were the cause (an advanced state of congestive heart failure) wouldn't you be seeing (paroxysmal) night time dyspnea as well?
Also the thing to watch with Enalapril is creatinine clearance to avoid accumulation.
The sparkle...it's what we need isn't it? To know that connection of intent, that manifestation of pure life is a string of energy which pulls us up no matter how down we are.
Slowly you will adapt, and continue to cultivate a path towards that sparkle until you will see it again, perhaps in slightly different form. Change, after all is inevitable, but we have to find our relationship anew and not lose faith.
Change can be so hard when we've already acclimated and accepted the way things are. Even small changes seem encumbersome. Your theory about the secretions and CHF seem to make sense to me. You both look so drained. I need exercise to stay sane too... I love you both and hope you can find your new center of gravity.
Glad things are getting back to normal - even though it is a new normal.
Thin continuous thin secretions for Will usually means allergies and Zyrtec, but it is hard to compare. I wish we only had 4 meds a day :)
Hmm. When Ben's heart was in trouble and he was on Enalapril, he also had copious watery secretions. One of us would just keep a gloved hand sterile and at the ready for hours sometimes and then wondered if constant suctioning just led to more secretions. Vicious cycle. I hope it stays relatively calm for you.
Ann I'm glad to hear of calmer waters. I suspect Jack's sparkle will return. It's been a harrowing few months. Mostly though I'm glad that the accute period with bagging and pain seems to have passed. I wish you both a speedy recovery from these difficult times, you both need to recuperate. Much love my friend.
Eric - thanks for your input. Always appreciated.
And I agree, you learn to accept whatever it is your child will give you. You adjust, adapt and accept even when you don't think you can (or want to) "give" anymore. After all, this is a journey!
Hmmm, Jenny ... Jack's watery/copious secretions started before he started the Enalapril, although it sounds like the Enalapril may be making it worse.
Harlie is on Enalapril, too. For years and will stay on it. I can tell you that I know that Harlie's heart cannot handle increased fluids in her diet. Every new (to us I mean) nutritionist wants to increase her water. But every single time I've tried, her secretions get the way you are describing until I reduce them again. And this always poses a problem when she goes in the OR because they tend to pump patients full of fluids for surgeries.
I know their hearts aren't the same, but I also know that their hearts have both been through more than they should have in their short lives. Harlie's will only last her until her 20s or 30s (they are guessing) so, maybe they are both tired and over-worked?
I'm sorry that his heart is now on the forefront of your mind. I hope that things settle down, and that a cardiologist can shed some light and maybe a solution (if there is a connection) to the increased watery secretions.
Thinking of you always... I hope you get to put those running shoes on and get out there soon!
Much love,
Christy xo
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