Friday, April 26, 2013

Day 4

Today was one of those days, that when you look back at the end of the day, you can't even remember everything that happened....or you do, but you're not sure if it was from today or another day!  A day that never really stopped, just one thing after another!

I started the day with optimism and hope, but after a short time, it became apparent that we still had a very stubborn and unagreeable little boy.  During the night, he'd had some high heart rates in the 160's, so they increased his oxygen, thinking it was due to his low hemoglobin.  He still refused any food, but did drink, and thanks to his IV that was running all night, was definitely on the positive side of wet.  During rounds, I heard the cardiologist say that he needs to get mobilized and he needs to eat.  Umm....yes, I'd love that too.  They want to get us out of here by late this weekend, or early next week.  

Another issue that he's having is his refusal of oral medicines.  Most all of his meds have now changed from IV to oral.  So, his latest trick is to spit it out as we're shooting it in his mouth.  Bad behavior is one thing, but bad behavior that interferes with the drugs that his body needs and determines his wellness is quite another.  These meds are coming every couple of hours, the way that they are staggered, and there are usually 2-3 at a time, so it's quite a battle.

Mid morning, before getting his blood transfusion was blood work time.  Now, he's already got the reputation of being super hard to get anything on.  They called up the best people they know, and even they tried and failed.  At this point there are about 5-6 nurses and techs surrounding the bed, plus Don and I, and Nate is really struggling.  Crying a lot, asking 'Mommy, can't you do it?", "Why does everything they do hurt?", etc.  The final approach was to go off of a vein in his foot.  They did get some, but not as much as the wanted.  And in that process of being pinned down, and waiting for the very slow blood to come in, all of Nate's exertion caused one of his chest tubes wounds to spring a leak and bleed through all the dressings (and remember, he's now on blood thinners).

Yikes!  By the time that was all cleaned up, it was time for his blood transfusion.  During that time, we started on our Warfarin/Coumadin and testing education.  Definitely a lot to take in and process.  Especially after being kind of  'done' from the morning.  After being infused, Nate perked up and was ready to get out of the room again.  He took his first steps....very slow and shaky, and only with me totally supporting him, but he walked several feet.  As the day and evening went on, we practiced his walking a few more times.  The longest stretch was about 10 feet, which felt like a real improvement.  He also ate 2 Fuzzy Peaches.  Victory!!!

At supper he had one bite of a hamburger, and at bedtime, half a dish of applesauce.  Very small steps, but grateful to at least have small steps.

After 9pm, the cardiologist on the floor asked Nate to go for another chest x-ray.  Both lungs are slightly collapsed in the lower lobes, which can often happen after surgery, and usually will improve with getting up and mobile.  However, after listening tonight, (and she just loved listening to his heart...loved the sound of his valve!!) she wanted to rule out the possibility of pneumothorax.  So we did the x-ray shortly after, and it showed the issues she'd expected (pleural effusion and the collapsed areas), but not pneumothorax.  Thanking God that we didn't have to add that to our plate.

After today, I thought about how, as Nate's mom, I would do anything to take this constant suffering away from him.  And I would, in a heart beat.  But I also know that if I did that, and had to put up with everything that he has had to this week, well, I'm not sure I'd be the most gracious or mild mannered person either.  Actually, I know I wouldn't.  I'd be a down right sour puss.

Anyway, progress today, sometimes only baby steps, but they are steps.  And then a dose of sweet, happy reality when we FaceTimed with my parents and Brady.  Glad for the two brothers to be able to see each other.

Thank you to each one of you for each prayer, email of encouragement and support!!!  So thankful we're not in this alone.  Tomorrow is another busy day with blood work, getting educated on more blood thinner information, and learning not only how to test Nate's INR levels at home (with a prick to the finger - dear Nate, you just have no idea what's coming yet), but also be taught how to administer the injection form of Coumadin, in case we ever need to switch over to that format instead of the oral meds.  Plus, Discharge will come to pay us a visit, since they don't know when we'll be going home, but in case it's on the weekend, they need to get things lined up tomorrow.

That's all for now!

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