Driving and Dum Dums

 Tiernan has the best nurses, therapists and doctors.  I'm telling you, they are not happy with his low moods.  So yesterday he got special permission to load up his gear and head out for a drive.  This might not be the best picture to show the setup, but he had to tow his IV pole (with no less than 7 pumps going) and have portable O2 for the trip.  But with help from Nurse Kim and RT Mary, he was on the road and made his way through CVICU to the outside hallway and made 2 loops before heading back to the room.

 The sitting up and being out and about, if only for 10 minutes, clearly wore him out.  Heads are heavy, people. 

 However, once back in the room, against his will, we settled him in the chair.  He finally relented (that sounds like he put up a big fight, which is not the case, but he was....mmmm....displeased about not going back to bed) when he was promised The Lego Movie and a special treat...ice chips!!!!!  Woohoo!  He has not had anything in his mouth besides the oral care stuff or vents since July 17th.  He was so happy with this option.  More than once he said, "I like water!"

 But wait. That's not all!  He also got permission to have suckers!!!!  I had contacted his former OT, Amanda to give her an update and she saw that he was still being tube fed (we both are bummed about this, even though we know it is totally necessary).  Her OT brain immediately started suggesting oral stim options to give him tastes and input.  Can't have him going backwards!

 We finally got his Beads of Courage and Heart Hero up for inspiration.  I thought for sure that Packard would be on board with BOC, but they stopped it about a year ago.  No matter.  He is still on the distance program, so he will be getting his beads. He sure is earning them. 

 Our skin is the same color.  That is all.

 

Like I said, his care team is very aware of his increasing sadness and they are open to doing what they can to help.  Dr. Reddy is amazing.  She is so gentle and calm, but still manages to be absolutely no nonsense.  I love watching her check him.  I don't really know how to describe it, but it is amazing. 

 

The plan at rounds yesterday was to get him fed with something other than TPN/Lipids.  So they decided to take him to interventional radiology to have his NJ finally placed under fluoroscopy.  This is an uncomfortable procedure for sure, but Jason (and the nurses) said Tiernan was exceptional.  I can't get over how well he is tolerating all of these horrible procedures.  What a remarkable kid.  I'm not kidding.  The nurses assure me we are not over-stating it.  He is unusually brave for a 4 year old. 

 

So now the challenge is to get him up to full feeds (50 mLs per hour) AND keep his fluid balance negative.  No easy task, I guess.  In fact, as I type, (it is 6am) he is actually positive.  Dr. Reddy is not going to be happy.  I believe her words were, "There is absolutely no reason for him to be positive at the end of the day."  And theoretically, this is true.  He is peeing like crazy and on Lasix, Diurel AND Aldactone.  That's a whole lot of diuretics to still be ending up on the positive side.  The only thing that makes me think is might be okay is the X-ray has definitely improved since yesterday. 

 

With all that duresing going on, he is continually needing potassium replacements.  Last night was a little weird, in that he was receiving the K but ending up lower than he was before it was given.  But then they determined it was because they had switched him to the oral version of the med and that is not as effective. 

 

For his heart, they are continuing the Milrinone but have added a beta-blocker called Inderal (Propranolol) to lower his heart rate and give his heart more time to empty with each beat, thereby also lowering his blood pressure.  His HR had been running in the 130's, and sometimes climbing into the 140's.  Too high, for sure.  His BP was in the 1teens as well.  So this morning I am looking at HR 121 and BP 100/52.  Much better.  BP is even dropping back into the 90s when he's really asleep.

 

Now that he has his Power PICC, and it is working well, they will likely remove his one remaining ART line.  Then the PICC will be all he has for IVs.  Way better than the 7 he started out with.  He still has his left chest tube, but that has slowed a lot more.  I think it will probably stick around for a day or so longer though. 

 

Last night was my first night in the RonDon House.  J and I will be switching off, but staying on our schedule where J is the late shift and I come early.  In working it out this way, we both seem to be getting decent sleep.  We are a little confused about the house though.  Because the transplant and otherwise immunosuppressed families are now moved to a different, construction-free location, we were placed in a transplant suite.  It is 2 rooms, with a kitchenette and TV.  It feels absolutely luxurious to have this room.  But when Jason checked in, they said we could only have it as long as there wasn't another transplant family who needed it.  ????  I thought we were only there because the transplant families couldn't be.  So that is weird.  Also, they said that we could only stay until he moves to 3West.  But I thought that once we were there we stayed until discharge.  So we will be clearing things up with our social worker later today.  Regardless, I stayed last night and I watched So You Think You Can Dance and enjoyed quiet. 

 

It was less wonderful than one would think. 

 

Don't get me wrong.  It was very nice to be out of the hospital and in a real bed without 5 other people snoozing on sofas next to me. 

 

But it felt a bit helpless.  I know it is only a 4 minute drive away, and Jason is just up one floor from Tiernan, and that he hasn't needed us at all during the night yet, so I shouldn't worry as much. 

 

But I did.  I probably just need practice. 

 

Meanwhile...In Montana....