Monday, January 27, 2014

Clinic and an Impromptu NICU Visit.

Last month my update was pure frustration with the way things were run in the clinics.  I'm happy to report that things were MUCH smoother this go round!  We had another pulmonary hypertension clinic this morning, complete with an echo cardiogram and his Synagis shot.  We arrived early to check in, and while Dave and the nurse headed over to the echo in the main building, I went over to the clinics to check him in for his 10am pulmonary hypertension clinic appointment.  I wanted to be sure they knew we were there well in advance, and that we would be getting the synagis shot again.  I also had to confirm that the GI doctor would be seeing him in the same clinic because we had arranged the appointment for the same time so that all of his doctors could be on the same page.

Ryan has been doing great lately.  In fact, Dani and I both caught what appeared to be a strand of the flu virus that is not covered by the flu shot and does not show up on the flu test because she was swabbed while sick and it came back negative.  We basically quarantined ourselves into one room of the house so that Ryan wouldn't get sick, and between Dave, my mom, and our nurses and therapists, he had plenty of fun, love and care.  Luckily, we are all better now and he has been spared!  He was actually doing better than ever that week.  Hardly congested at all, he wasn't throwing up or anything.  Then yesterday morning he woke up congested again.  He started back up with the coughing and gagging which leads to him throwing up.  Anyways, it's a vicious cycle, and it was perfect timing for him to come in and be seen by the specialists.

Now for the good news.  The echo showed that his heart is still looking great!  There isn't a leak in the valve, so the pulmonary pressure is unreadable.  That's exactly what we want.  The cardiologist was especially impressed that even with his current congestion, he still isn't building up pressure in there like he would have last year at this time.  We are keeping him on the same dose of the sildenafil with the plan that he will just grow out of it after flu season. 

The pulmonologist gave us a prescription for some flonaze to help clear his nose out a bit.  This congestion, which just settled in again yesterday, seems to come with the changes in the weather, and it's really hard to say if it's the extra mucous that is gagging him and causing him to throw up more, or if he's refluxing more.  We are also trying out a supplement to his blended diet because he's just not gaining weight as well as we'd like.  Even though we are packing his blends full of high calorie foods, he burns calories breathing and we can't keep up.  He's also more mobile, rolling around like crazy to get where he wants, so he's burning the calories on all ends.  We are hoping to slowly increase the volumes he gets in a day, but not too quickly because we don't want to create more throwing up/reflux/congestion.  What a delicate web we weave, right?

The best part of the day was getting to visit Ryan's former doctors and nurses in the NICU.  I had texted two of his daytime primary nurses on a whim to see if they were working, and they BOTH were!  So after all of his appointments, we went over to the cafeteria to eat lunch (man, did that turkey burger bring back some serious memories!) and then we went up the elevators to the 2nd floor just like we had done for 7 months when Ryan was a resident there.  Just as we were getting ready to push the call button at the small baby unit to see if anyone had a moment to come out and say hi, Dr. Soliman came walking out the doors and did a bit of a double take to see us standing there with Ryan.  Then familiar face after familiar face started walking by and would stop to see how he was doing.  I'm not even kidding, we saw just about everyone...from the head neonatologist, to his main nurse practitioner, to both primary nurses and a bunch of other nurses that new him well, one of his physical therapists, I even saw the lactation consultant I worked so closely with to keep up the pumping the entire time he was in there.  He even got to see one of the doctors who was on the transport team that brought him to their NICU from the hospital where he was born that very first night! 

It really is amazing how you see those people every day for such a long period of time, they almost become like family or coworkers, you just get used to seeing them and talking to them daily. Except they are extra special because they saved your baby's life.  And they saved your life a few times, too.  You leave the NICU and you're so happy to have your baby home, but you miss them.  It's really strange.  We've been lucky enough to keep in touch with a few of them through Facebook and a couple of them were able to come to his first birthday party.  But today, seeing so many of them surrounding Ryan and showing him so much love, it was truly a blessing.  After catching up I was so overjoyed in that moment that I completely forgot to take a picture, and I'm just kicking myself!  Even Dave was like, "Oh yeah...that would have been a really great picture!" when I mentioned it to him on the way home, and he really doesn't usually care about those things, lol.  Well, now we have an excuse to go back for another visit soon, and this time I'll take a picture!



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