Not Again!

No, there's nothing seriously wrong with Tim today.  As a matter of fact he's doing as well as we can hope.  He's down to IV drips now along with periodic supplements and oral medication like he takes at home.  Tim is also no longer classified as a critical patient which means he can do things like get up out of bed and go walking around.  Tim is also eating better every day, although he isn't back to eating as much as he would on a "normal" day at home which isn't surprising since he's nowhere near as active as he is at home.  These are all great things that we are very happy to be able to report.

The reason Tim is getting supplements is because some of his stats are showing up as low when they run his blood work, although none are dangerously low.  He's had low magnesium, potassium and sodium while in the hospital this time around.  We've seen all these things get low in the past when Tim was hospitalized before.  It is usually because of a combination of things like being on IV diuretics instead of oral (they draw the fluid out much more quickly and effectively), a change in diet and a change in activity level.  Usually they can get back on track by getting Tim transitioned to oral diuretics and limiting his pure water intake.  Both of those things happened yesterday, and while Tim prefers to drink water he isn't too upset about just drinking Gatorade, milk, juice and a little bit of soda.

The only real frustration for Tim came last night while he was trying to sleep.  Tim had a nurse he'd had last week in the ICU who is very nice, but works a little bit too much by the book and seems to have a better sense of how to treat infants than older kids.  We of course understand the need for policies and protocols, but we also understand that of even greater importance is the need for Tim to get some good sleep if he is going to remain as healthy as possible.  Our nurse last night initially insisted that an overhead light had to be on overnight.  How this would create a good sleeping environment for Tim or anyone else is hard to understand which is why we fought back immediately, ultimately compromising on leaving the curtain drawn back a little more than we would normally want to so she could see Tim more easily.  She also pushed Tim to drink more fluids before going to sleep, but Tim told her he just wanted to get some sleep so she backed off on that too.

Then, in the middle of the night while trying to draw some blood for lab work she wound up waking up Tim to get him to straighten out his arm so she would have better access to his PICC line.  Now, the whole reason for the PICC line was to avoid having to cause Tim any discomfort when giving him medications or drawing blood, yet somehow while drawing the labs Tim wound up in tears because how the nurse was making him straighten out his arm was causing him pain.  Then not too much later Tim was starting to settle down again and she was back in the room taking an EKG.  This didn't cause Tim any pain, but it was just another impediment to him getting some sleep.

We brought all of this up with the doctors this morning and they were on board with the idea of holding off on some or all of the overnight tests until 6AM to allow Tim to get a better night's sleep and would discuss it further with the rest of the team during the day.  Likewise, we also had further discussions about allowing Tim to leave the 15th floor so he can enjoy the playroom on the 12th floor.  For the time being the doctors are being very cautious with Tim and are hesitant about letting him off the cardiac care floor.  This, of course,makes some sense since none of us want to see Tim put in any unnecessary danger.  Plus, since Tim was just taken off the critical care list it makes sense to let them get some additional data about how well he's doing with less medicine to support him and to let him build up some strength after lying in bed for over a week.  Still, some of the feedback we've gotten is that they are also concerned because there aren't many if any doctors on the 12th floor and there definitely isn't a crash cart on the 12th either.  Sounds like this was an error in judgement when designing a play area in a hospital.  Being that in many ways Tim is even more healthy now than he was even in the days before he went into the hospital, at least from a heart standpoint, we are finding it hard to believe that he can't leave the floor.  So, we will continue to push to get Tim as much freedom as possible since we know it helps contribute to a positive mental attitude for him.  At some point we suppose we will wear someone down enough for them to look away from policy and protocol and see they've got a kid who just wants to play with other kids in front of them.