Bumps in the Road.

Today has just been one of those days.  I know we are going to have them, and I know I just need to stay focused and remember how blessed we are just to have our little family of four all together and HOME, but man, the stress just takes a toll sometimes.  Thank goodness I have my little online support groups to vent, cry, share, and just release all the negativity.  There are constant reminders of how lucky we are to have Ryan here with us, and I try not to take them for granted.  So I will try to keep this update positive and upbeat, because the bottom line is, we are truly blessed.

So, all that said, today we had a follow up visit with the cardiologist.  Dr. Doshi wanted to see him a couple weeks after his little overnight stay in the CVICU to get another EKG and make sure that abnormality had worked itself out.  Well, the appointment starts out with them getting all his stats and vitals.  Let's start with the good news.  Ryan weighed in at 17 pounds!!  So proud of him for all that weight gain!  After we weighed and measured him, she hooked him up to a pulse ox to see his sats.  And they were 85.  On 1 liter of flow.  This is not good.  She asked me if that was normal for him, and I said no.  Of course, right before she hooked him up, he had a coughing fit which caused him to reflux, which caused him to cough more, and just rightfully pissed him off.  So it could've been that.  She waited a little while for him to regain his composure, and when he did, he was still satting 90.  I think she could tell I was determined to make it go higher before I would let her write down such a low number, so she said she would just leave the pulse ox on him when we went into our room.  As soon as we sat down, he fell asleep in my lap and his sats when up to around 96, which still isn't great for him, especially considering he's on 1 liter, but they were ok with it.  I'm going to include the picture Dave took, only because I think it's cute that Ryan promptly passed out on me as soon as we sat down, but you have to promise to ignore the bags under my eyes, ok?  I know, now that I mentioned it, that's all you'll look at.  But just look at Ryan!! Isn't he adorable?!

 

 

 

Anyways, the EKG results were not as great as we had hoped.  The abnormality was improved, but it was still slightly there.  She showed me the read out, and the heart rhythms are printed on paper covered with square grids.  She explained that one of the dips in the heart rate line was significantly depressed when we got admitted (the line dipped down 4 or 5 squares on the grid), and today it was only slightly depressed (dropping just one square on the grid).  So, based on that, she ordered an echo to see if they would find extra pressure pushing into the right side of the heart.  When his lungs are working harder, some of that air pressure from the lungs can push back into the right side of the heart through the valve that connects the two organs, and this is called pulmonary hypertension (PPHN).  If you've been keeping track, Ryan had PPHN throughout his 7 months in the NICU, but was finally cleared of it in November.  Unfortunately, the echo confirmed that the PPHN has returned.  The last 4 or 5 echoes he's had showed either no pressure or pressures that were so slight, they were unreadable.  Today they could read the pressures at 40 or 50.  I don't even know what unit it's measured with, I just know she said 40 or 50.  So, he's going back on the medicine (sildenafil) that he was on before to treat this.  We aren't sure what caused it to come back.  It could be that his right heart is just sensitive to sedation, it could be that he's fighting this cold and his lungs are working harder which is making his heart work harder, or it could just be a mystery.  Either way we are praying that both his lungs and heart will continue to heal and grow and become healthy and strong.

In other news (I wish it was good news), we lost another contact lens again tonight.  I cannot even tell you how frustrating it is.  We just bought a new one to replace the left lens that we lost, and then the right one goes missing.  We are starting to think that it might not be worth it to replace it.  We really don't notice a huge difference in his vision between when he's wearing them versus not wearing them, and to be honest, the amount of time and energy we spend searching every nook and cranny in every possible place when they fall out just isn't worth it.  It's so hard to know what's best for him.  We don't want him to miss out on developmental things if he can't see, especially since we know he can't hear, but honestly he plays with his toys and appears to look at things even when he doesn't have the contacts in.  I just don't know.  Maybe God will let me know what's best by either letting the contact turn up so we can keep using it, or by keeping it missing to signify that we are better off without it.  We shall see. 

So, lots of prayers for our Ry-guy tonight.  I just can't wait until he feels better and "normal" again.