Time for a tune up

I can't believe I went a full day without posting to the blog! 

But there is a good reason for that. 

Nothing really happened yesterday. 

Day 19 was pretty much without excitement of any kind.  He walked some more, but only when his clever PT turned it into a game of hide and seek.  He ate really well and took in the amount of fluids they wanted for him. He was, as Dr. Reddy said, the only kid in the CVICU who is on point with his I's and O's.  (ins and outs).  Tiernan was more comfortable sitting up and playing and doing things than he has been and overall seems cheerful. 



 

 He had his first visit from the Speech Therapist, Meg.  She determined that, yes, she can hear his vocal cord trying to compensate and that much of what he needs to work on is breath support.  So, although it is difficult to see in the photo, she had him blowing bubbles off her wand.  (You can sort of see it right by her fingers, but there are so many lines and so much white that it kind of disappears) He just needs to, as Mr. Bradley would say, "give it some wellie" (not really sure how to spell that one...) and use his theatre voice.  Diaphragmatic breathing and all that. 
Oh, speaking of the diaphragm.  Apparently it is slightly paralyzed on the right side as well, but nothing they are concerned about.  It should rehabilitate on its own throught the other therapies.

 He has a "roomie", Ashley, who is 22 years old.  She is in congestive heart failure but pretty upbeat and talkative.  She thinks he's the cutest and tries to encourage him to take his meds and do walks.  He continues to manage well overnight in the few hours neither of us is with him.  This is almost as big a relief as all the medical stuff.  I am sure once he knows there is no reason we cannot stay with him (up on 3West or at home) that he won't let us go a night without him near us for awhile. 

This morning they woke him early to place a new PIV.  The reason being,  his WBC is slightly elevated.  Although he has not had a fever or any outward symptoms of infection, his numbers indicate the possibility.  He was complaining of slight increased pain at the incision last night so they don't want to be without IV access in case he needs IV antibiotics.  He does not have the IV currently, but they will be placing one today. 
The other big news from rounds was that Dr. Reddy honestly feels he needs to have his CoA stented in the cath lab.  Hanley had elected to leave it alone with its little 20 point gradient rather than keep him on bypass and in the OR longer than necessary 3 weeks ago.  But now, Reddy believes it is keeping him from fully recovering. 

Remember that his LV is slightly small and not used to doing the job on its own quite yet.  It has to pump blood out to the body against the CoA (pinched at the arch) which adds a level of difficulty.  If the ventricle isn't emptying as efficiently as it needs to, the mitral valve tends to allow some of the blood to regurgitate back up into the Left Atrium.  The gradient is the difference in BPs from above the CoA to below.  It is a difference of around 20.  So as they monitor and give meds for his BP, they have to keep the upper BP a bit on the high side in order to ensure a good BP and perfusion for his lower extremities and organs...specifically The Kidneys.  All of this would improve if they opened up the CoA.  And because Hanley didn't do anything with it 3 weeks ago, they are safe to go ahead and stent it now.  They would stent as opposed to balloon at this point because he has had it reconstructed and ballooned twice now, so clearly it is one stubborn CoA. 

As much as we would love to be moving up and out, I am incredibly thankful to Dr. Reddy and the entire team for their careful and conservative approach.  If he goes to cath it would likely be tomorrow. 
All of this time in CVICU, I think, should lessen the time he spends in 3West.  He is doing so well, and just needs a little tune up.  (Crazy to think that is how we heart parents look at a cath.)