Monday, November 26, 2012

That's WONDERFUL!

My facebook friends will understand the title reference, I'm just so excited to share the good news of today because as Dani would say, it's WONDERFUL!  We had our pulmonary hypertension clinic appointment this morning, and we really couldn't have asked for a better report.  Basically, from what I gather after one visit to this clinic, it's just a time for the cardiologists and the pulmonologists to hang out in the clinic together and see patients at the same time since PPHN deals with both the heart and the lungs.

Dr. Doshi, the cardiologist, came in to meet with us first.  She remembered Ryan from his extended stay in the NICU, and I had actually just spoken to her about 1.5 weeks ago when we ran out of the sildenafil medication and I was worried he was having withdrawals (Yes, call me a paranoid preemie mom.  I'm pretty sure I posted a blog about this, if not, just ask me.  It's a long story.)  Anywho, she knew who we were and was really excited to see Ryan.  She had gone over his most recent echo, and she was pleased with what she saw.  So, she said we could discontinue the sildenafil!!  Now, it was really hard not to get annoyed by the fact that I had called them when he first ran out of the med because insurance wasn't going to cover it for 3 more days and he was on such a small dose with no real evidence of PPHN in his last 3 echocardiograms so did he really need to be on it?  Really?  (Forgive the run-on.  I can't help it.).  But I'm not going to get annoyed.  Nope.  I'm going to be ECSTATIC that he's off one more of his meds and showing signs of getting healthier and stronger.  Because yes, I may have refilled that med only to be used in a tiny ineffective way for 1.5 weeks before they nixed it, but in the grand scheme of things, that just really doesn't matter.  Also, the medical people out there (or those who remember me telling you the brand name of sildenafil) might get this:  Dave was talking about what we should do with all the leftovers and says it should not go to waste.  It's a suspension med for babies, so we'll see how that goes. What's he going to do, drink it? ;)

Dr. Nickerson, the pulmonologist, came to see him next.  He was also very pleased with Ryan's progress.  He said that at our last visit the doctor had noted a crackling sound in Ryan's lungs, but today he sounded totally clear!  He was really impressed with how well he handled the anesthesia for his eye surgery last week.  He told us to discontinue one of the nebulizer meds and just use it as needed if Ryan gets sick. When I mentioned that he coughs like an 80 year old smoker in the mornings, he said we should keep the nebulizer for mornings when he wakes up to help loosen and clear out that phlegm.  I asked about weaning down his oxygen because he's been satting 99-100 constantly on 3/4 liters flow, and he said his style is more to just go from having oxygen to not having oxygen anymore, but with the flu/RSV season starting up and everything, Ryan would be better off with oxygen support to get him through it.  He said that there's not a whole lot of difference between 3/4 liters and the smaller fraction amounts, and I said it does make a difference for us because we're going through the oxygen tanks pretty quickly at our house.  So he said he was fine with weaning him down to 1/2 a liter!  It was so non-chalant like it was no big deal.  Dave was saying weeks ago we should just put him down to 1/2 and no one would know the difference, and I was like, "OMG, you can't just CHANGE his settings like that!"  But, I guess I was wrong! Haha. 

So, lots of positive changes today!  The greatest part was coming home and changing his meds schedule in my binder.  The one on the right is the one we've been using for the last month, and the one on the left shows the new schedule after today's changes.  SOOO much easier!!



We are really feeling so blessed with all this good news.  The power of prayer has been so strong and we appreciate all of your prayers and good thoughts.  In addition to all of this WONDERFUL news, we're also noticing Ryan starting to look at his light up toys more!  We have a follow up eye appointment tomorrow, so hopefully the good news trend will continue!  So proud of our little fighter.

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1 comment:

Unknown said...

I am thrilled to hear such WONDERFUL news!
Hollie