Gavin had to be re-intubated in the middle of the night on the Friday after he was extubated. That Thursday I noticed his nurse was not suctioning his throat enough, and I could tell he was having a hard time breathing. I woke up for a date with my yellow beast (otherwise known as the hospital pump), and found a voicemail on my phone from the NICU saying that Gavin's blood gas was very high because he was struggling to blow off his carbon dioxide again. Surgery also ordered another ultrasound of his heart to make sure that there were no other reasons that he was having a hard time being extubated, but at rounds everybody agreed that it was a mucus build up that plugged his left lung. Hours after being extubated he had already turned around and was doing worlds better because the ventilator opened up his left lung and got the mucus out.
WELL, Monday things got completely insane. I was walking into Gavin's room at about 4:15PM while Ryan was out running errands for his new job that starts Wednesday. I saw a huddle around a woman in a white jacket, which means she is an attending (big wig). She looked very excited about what she was talking about, but the residents around her did not. I thought to myself "man, glad they aren't talking about my kid." Well about that time the residents all looked at me like I was walking into my own funeral. I knew it. They were talking about Gavin. Sure enough the woman in the white jacket walked into Gavin's room a few minutes later and dropped a bomb on me. She told me that Gavin HAS pulmonary hypertension and that she also sees that his veins are narrowing on the ultrasound, which indicates a disease called Pulmonary Vein Stenosis. She did say that the ultrasound is not a great way to check, so he would be going to have a heart cath (put a camera into his heart!) and that she hopes she can get us an appointment in the next 48 hours to have that done. Uh. What? I was in tears saying I didn't understand and that he was fine before he tested positive for rhinovirus, and that I really felt that was the activating event for all of this. She said that wasn't the case, and then just left me there in tears. I can't say this was the greatest way to deal with this. Not to mention, we didn't hear about having an appointment for almost 24 hours! Our nurse even called a care meeting because Ryan and I were so upset over how this was handled. So, we ended up getting an appointment set up for the upcoming Thursday.
Wednesday hits. A very nice cardiologist named Dr. Rubio meets with us to tell us he would like to do a flow scan first, which is less evasive, to see if maybe this is all just nothing. The flow scan is done Thursday morning, our nurse comes in to tell us that Gavin's flow scan shows he has Pulmonary Vein Stenosis (PVS), and there is nothing else that could be causing the results. Dr. Rubio comes back to say that he will be doing the heart cath to see how bad the PVS is, and that Gavin will survive, but will be in and out of having heart stents/balloons and open heart surgeries for his entire life. Also, it would be unknown just how long he would survive. Maybe to 7, maybe to 50. Uh. WHAT?!! So, as you can imagine, we are completely devastated. I could not find one peer reviewed article that indicated any good outcome for this. Gavin was taken back for his heart cath, and Ryan and I just sat in his empty room in almost complete silence for about two hours. I sat in a chair and cried off and on, and prayed silently for a miracle.
Dr. Rubio comes back at 7pm and asks "Are you ready?" Um, YES!!!!!! He sits us down and draws us a diagram of Gavin's innards and explains that Gavin's heart is pulled over to the right a little bit, and that this caused one of his pulmonary veins to take a little bit of an interesting route. He also explains that Gavin's top lobe of his left lung isn't working as well, but it is likely due to the rhinovirus. Also, even if it isn't, he can lead a totally normal life like this. So, Gavin does not have PVS. At all. Actually, he doesn't even have pulmonary hypertension! I will say that it appears that some people jumped the gun on this diagnosis, and I don't like how it was handled at all. But, in the end, who cares. We are just glad he does not have a chronic heart disease!!! And, we got all of this information delivered on his one month birthday! A miracle is always the best gift to get. :)
I hope that other parents of O babies remember this if doctors ever start handing out a diagnosis. When a baby has an omphalocele, there is a lot of pressure, and it tends to pull on other organs. Dr. Rubio said it is likely that all of this will correct itself as Gavin grows, and the omphalocele shrinks. All along our surgical team was a little leery of the PVS diagnosis, but that is because they have so much more experience with omphaloceles. Another O mom reminded me that a diagnosis isn't final until the tests are done. :) Thanks Kelsea! This was so true for Gavin!
So, we are out of the NICU now, and just working on getting him eating and off of the oxygen he still needs because of the rhinovirus. So, hopefully we get to go home in the next couple of weeks? :)
I am so so so so so happy that Gavin is doing great, and you and your hubby are super awesome parents. I'd like to slap that lady who gave you the horrible (wrong) news with such atrocious bedside manner, though.
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