Post Op Day 5

I just realized that we wrote the post op day 4 post last night but never published it so you're getting 2 days worth of updates at once.  Sorry about that!

Today was a tough one (truly, they all are) just because there was a lot that got thrown at Landon and we can tell he's tired of it.  He got another great night of sleep last night (slept until 7:40 this morning!) and had a nice quiet early morning eating breakfast and watching "Up".  But then we had his 9am meds (which there are several of), rounds with the doctors and X-rays which he still hates.  If he was just getting a regular chest xray they could bring the machine to our room but they want to get a 2-view xray so we have to take him down to radiology for that and he's figured out when we are going to do that. 

When we got back, we let him sit in the wagon for a little bit but then had to take his least favorite med (which he totally flipped out about today) and get an IV (which he also understandably flipped out about).  They said they needed to do some labs in rounds and that it would be best to just go ahead and put in an IV with that same poke just so they have the access in case they need it.  It was pretty excruciating to get thim through that but since he got the IV in his arm it hasn't seemed to bother him too much.  And they got it in the 1st poke too which is ALWAYS a plus!  Poor guy already has several bruises where they tried and failed to stick him with an IV while he was under for surgery.

Then he got lunch followed by an echo.  He had spent so much energy fighting us all morning with xrays, meds and the IV that by the time the echo came around he didn't fight it - he just let them do their thing and watched a movie.  He took a nice long well-deserved nap after that.  They decided in rounds this morning to put him back on oxygen to help dialate his pulmonary arteries and hopefully prevent more fluid backing up in the plural space (some doctor is going to correct me on this I just know it) where they are trying to drain the fluid now with the chest tubes.  So they put the oxygen on him tonight and he was going crazy with it at first but seems to have quite fighting with it for now. We heard that the xray from this morning was about the same as yesterday (meaning he still has some fluid to get rid of through the chest tubes) and he haven't heard anything yet about the echo. 

There was also concern of a possible air leak in the chest tubes today but since they were inconclusive in discerning whether one exists they decided to just watch it for now.  There are always concerns with the chest tubes (too much output, not enough output, color of output, air in the tubes have all come up at various times in the last few days but none of them have been escalated as of yet) so we are anxious for him to get them out!  Still no solid word on when that will happen though.

They've been encouraging us to get him up walking the last few days - it's hard though since he has been so miserable and had some many unpleasant things going on to force him to do another thing he will clearly hate in the few minutes of happy time he has during the day.  We took him on a wagon ride around the unit tonight though and got him out of the wagon to stand up for just a minute.  His legs were really wobbly and he only took a couple of steps on his own but it's a start!  His eating continues to improve but is still not back to normal so I'm sure his low calorie intake has something to do with his weakness and also not standing up for almost a week.

It's hard to pick him up and move him around at this point because we can't pick him up under his armpits, he has the IV in his left arm now, and he has the 2 chest tubes so we have to be very cautious of all of that.  Plus he's 29 pounds so he's heavy even when we can pick him up normally and he's too big to try to pick up like a little baby !

I guess I knew this in my mind before this all began but each day that goes by gets tougher for Gary and I  - to have to watch him in so much pain and discomfort and to have a boy who loves being friendly to everyone be skeptical of everyone who comes in the room including the maintenance guy and the housekeepers.  Someone ordered today to put him on pain meds "as needed" instead of on a schedule and I got them to change that back so he still gets motrin/tylenol round the clock without us having to ask for it- it was a near Mama Bear moment. No parent likes to watch their child be uncomfortable and obviously this is no exception.  We still enjoy that window of time each day when he is watching a movie or something and is just chatting up a storm and back to his normal self for a little while.  We look forward to that being the rule again instead of the exception. 

Thanks for your continued prayers - we know there are several armies of people praying for Landon and we are so thankful for your thoughts, prayers and kind words.  They remind us that this time is a few frames in the movie of Landon's life.