A New Plan...Thank God because the Vicious Cycle Plan was wearing thin.

Following my early post this am, I found out that he was actually +350 or more on his fluids for the day. 

And his x-ray looked slightly worse today than yesterday.

I nearly burst into tears.  I thought for sure he would have his beloved ice chips pulled again and it was going to be another hideous day of spinning our wheels trying to get his lungs cleared. 

But then I talked to NP Monica and she had a new plan. 

They decided that he is looking quite good, all things considered.  His BP is in a good place (currently 96/54) and his HR is excellent at 103 or so.  His CVP (Central Venous Pressures) are 5-6 and he is keeping SATS in the 99-100 with respiration rates in the teens to twenties. 

So if they were to continue to push with loads of diuretics to get every last little bit from his lungs, then The Kidney's could rebel again.  And we sure don't want them to go on strike again. So given the good place he is currently in, the new plan involves focusing on nutrition and conditioning to get him up and moving much more which should, in turn, help those lungs. 

Nutrition Plan:
Continue to take sips of liquid (water, juice or even milk).  He can have roughly 1/3 cup of that every 2-3 hours.  So we aren't going crazy here just yet.  We need to make sure he does okay with swallowing.  His voice is getting stronger each day but it is still a bit weak and it's hard to say how much damage they may have endured as a result of the extensive work Hanley did near them and then from the 7 day intubation period.  If they are happy with his progress, maybe we can party with some chicken broth tomorrow.

Right now we are pretty fixated on being thirsty.  It makes him happier than anything else when he can have his drink. 

He has a reverse milk moustache and a big grin.

 (FYI this is the high flow canula and the photo below is back on CPAP)





Conditioning Plan:
The hope is that Tiernan will be on High Flow for 4 hours in the morning and 4 hours in the afternoon.  He has been handling it really well today.  This also makes it easier to get him up and moving around to get that strength back.  Every day he does better than the last.  Today he walked about 25 feet while pushing a wheelchair.  Then he was done and we pushed him back to his room.  So not super far yet, but he had much better stability than yesterday.

The other thing that will help him get more mobile is that last chest tube is OUT!  So are the pacing wires, which he never. even. needed!   It will be SO nice! 

So that will leave only his POWER PICC (cue superhero theme), NJ tube and the O2!  So much better!  He feels so much better just with that last tube coming out.  He just pushed himself up to sitting in his bed all on his own.  He sat there unassisted for a good 10 minutes. That is an enormous change. 

Meds:
They are beginning the transition from Milrinone to the oral form, Enalapril (Ace Inhibitor).  That has been his standard med for the past 4 years.  So it's not much different.  They will also keep him on the Propranolol (beta blocker).  He will also stay on oral Lasix and maybe Aldactone.  He is still receiving Potassium because of all the diuretics. 
Once they get all his meds through his tube or in his mouth, then he won't really need anything beyond blood draws.  They will hopefully pull the PICC before he even goes up to the floor. 

Speaking of that.

In talking to NP Monica, she feels like another week here in CVICU is a safe estimate.  Lots to do before we go to 3 West but we are making great progress!

I have no clever title for today's post.

Yesterday was a day of big ups and big downs for sure.  He started out the day with some good news from x-ray so the team decided to give him even more break time to high flow.  He did really well for the majority of that time, and even did more walking and driving.  His PT, Eilish is happy with his progress.  It is hard work for the little man though so he's not always as happy.  He would have liked to just go right back to his bed where he can lounge around in positions that don't make him work so hard.  But instead, Eilish and Nurse Alyssa rearranged his room so he could look out the window at the new hospital construction.  There are two giant cranes out there that provide some pretty cool entertainment for this guy. 

He was a pretty satisfied kid with his ice chips and even tried some popsicle, but I think he's mainly just thirsty so the ice chips did a better job of quenching that.  However, he got carried away and pushed his fluids positive even further and the NP said he couldn't have anymore. 

Well, that was it for any good mood for the rest of the afternoon.  Poor kiddo was so upset.  I tried using the oral care kit so at least his mouth wouldn't be so dry, but he was not buying it as a replacement. I got pretty emotional right along with him but once I was under control I suggested maybe he could tolerate a 3 mL per hour lower feed to allow for a little bit of water each hour.  They didn't want to sacrifice calories (how many calories with that really be???) but acquiesced and allowed him a ration of ice chips every hour.  You would have thought they'd said we were going home given how happy he was.  It got tricky to convince him that he could only have that little bit, but I think he finally figured out that some was way better than none. 

Dr. Hanley came to visit as well.  He is very pleased with the repair and reminded me that his LV is just adapting to its new increased job.  He still firmly believes it was the best option for Tiernan so I am still confident in the plan.  And as another mom reminded me yesterday, it is a marathon, not a sprint for these Bi-vent kiddos. 

I am still awaiting x-ray results this am.  But his fluid balance at present (6AM) is +80.  This had me a bit deflated because he is maxed out on diuretics and they can't seem to get him negative.  It's like his body has decided it will not give up that much fluid, regardless of medications.  But then his nurse told me the team had changed goals and wanted to just keep him under +200!  So now I'm a bit more relaxed. 

I am listening to the CPAP machine play it's little alarm that says air is escaping because he won't breathe through his nose. 

       Mi            Mi                              Mi                Mi

               Do            Do                            Do                 Do
So                                     (rest) So


And then there is the Line is occluded alarm that plays:
Do                   Do

        So____             So_____

But it is in a different key. 
Not a compatible key.
I'm pretty sure it is a diminished something higher. 
My brain can't even differentiate because it clashes so horribly.
And, naturally, they happen simultaneously.

I'm now wondering what a composition of all the alarms might sound like.  I'm pretty sure my dad should get to work on that. 

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....