Sunday, May 8, 2016

Day 7...and 6...and 5...and 4...and 3...sigh

This has been an extremely stressful week! I'm gonna try to make this short, but wanted to post what's been going on. But to make it easier on myself, I'll be copying a lot of my FB posts and fleshing them out ;) So Tues, David and I headed to NYC for his oncology appt...we had actually tried the week before, with less than stellar results. After driving all the way there, the MRI machine was broken, so we wound up having to reschedule :/ I was really hoping this time would go much more smoothly...ha! On the way we stopped for lunch at Nardelli's...which is amazing!!! Best sandwich place ever!

Tuesday - 
David is safely back for his mri... We got here pretty early but they are running behind... Go figure... At least it's working 😜 hopefully this won't make him late for his Dr appt! I came prepared! I have my charger, my ear buds and a book! 😁

waiting room selfie

Sooooo late for the Dr! Didn't even get done with mri until 4, which is when David's appt with his oncologist was, at a totally different building! 🏢 then we had to wait for the shuttle for another 20 min, finally got here 40 min late! At least none of it was our fault! Lol 😁 hopefully this won't drag on too long, I'm starving!

we both had gray on! 

So my hopes of a quick getaway were dashed. David's Dr was concerned about his elevated heart rate (it's at the high end of normal when he's just sitting, around 100...but as soon as he stands up, it shoots up to 140-150...even up to 170 if he's doing pt... Which is not super strenuous...we've been wanting to find out what the deal is since they discovered it at pt, I kinda thought it was medication related....) ...and some other symptoms he felt could be better managed... So he sent us over to the main history be admitted for tests. That was around 6...we finally got into a room about midnight! He had an ekg and a chest CT scan, they ruled out pulmonary embolism (blood clot) and now they want to do some constant monitoring which means another night for sure. I'm so ready to go home! Thank God for Sarah jumping in and taking my kids for the night...i was about to freak out! 😞please keep us in prayer, this is super stressful! I did not come that prepared for an overnight stay! So glad I brought my charger though! Whew!

At least they had a coffee shop!

David getting hooked up to the video eeg to monitor his brain for I have no idea what reason! Lol... Seriously though, what is it for? And it's ordered for 24 hours! Ugh... Hopefully they'll take it off much much sooner... I want to get home to my babies! David's just like, take the picture already... Doesn't even care... Lol

Thursday - 
Feeling a little better... Got a change of clothes and a hat to cover my crazy, three day old hair down in the gift shop...'s the little things...

So frustrated! 
😤 😣 😢 They unhooked David from the brain scanner thingy... He's had a couple EKGs, chest CT scan, been hooked up to heart monitor since last night... Had three failed attempts at a lumbar puncture yesterday to draw spinal fluid, finally had a successful but extremely painful attempt just now (I mean, his roommate's visitor said it sounded like torture!)... And we still can't go home! I so had my hopes up... They still don't know what's causing the elevated heart rate, so they want to keep him hooked up another night. Ugh! This sucks!

Yesterday's status - 
Sitting... Waiting... Antsy... Bored... Impatient... I just want to go home! The drs made their rounds...nothing happened, they're waiting on the report from the cardiology dept. David can't be released until they give the go ahead. They hope he can go home today...its their goal... Sigh... We literally have nothing else scheduled, just sitting here twiddling our thumbs... Well, David is sleeping... Lol... Why does everything in the hospital take so freaking long???? I mean, I logically understand why, but arggggghhhhhhh!!!!

So the cardiology team finally came by and said that he has what they call sinus tachycardia. Basically it's an elevated heart rhythm (thanks, we knew that already! lol), but there are no abnormalites or irregular heartbeat. They ran pretty much every test imaginable...but found nothing wrong. They don't know what's causing it, their consensus seemed to be conditioning, basically since he was almost bedridden for so long after surgery his body is working hard to compensate. David thought that was baloney! lol...but since it's asymptomatic (he has no shortness of breath, pain breathing, doesn't even feel his heart racing), they aren't terribly worried about it and won't treat it. Just keep an eye on it. 

And finally today - 
Well, I'm omw home, about half way there... But David is still in hospital... They won't release him because his blood counts are a bit low, and they wanted to send him home with boosters... But having prescription insurance issues! Called the insurance, they said it expired Jan 2016, but we filled prescriptions last week! Sounds like a beginning of the year renewal thing didn't go through maybe... Of course we found all this out at 5pm on Fri, so the union was already closed... Argh! So, we need to get the prescription insurance fixed, hopefully on Monday, at which point they'll let him go home... They can administer the drug inpatient and it will be covered by medical insurance... So because his counts were already low, they don't want to send him home without it... I'll head back either Sunday night or else Monday morning...I hate leaving David by himself, especially so far away... But I need to see my babies, make sure they're OK! So, torn, but can't wait to see those faces!

yup...pardon the french, but this expresses my current feelings at the moment!

It was heaven to see my kiddos and hug them just about to death. Buddy and Glitter didn't want to let go...and even the older two were pretty happy! They were totally fine, Sarah and Kim took great care of them...but it was especially hard since it wasn't a planned absence. No one was prepared for it. Just so incredibly thankful for friends who are willing to drop everything to help! What a blessing!

And I gotta tell ya, that shower I was finally able to take was the best! lol