Day 65: Tired of blogging...

When I arrived today, Frankie was getting another echo done. They just wanted to double check on his PPHN since he is coming off of his steroids. The doctor said that it looks a little better than the last one, which is great! While she was here we asked her about how much longer she thinks we may be here. She says she would love to send us to "the zoo"  (whenever they say the word home here, there's always a set back) before she is off service which is December 1st. I asked her what we needed to accomplish before we could go to the zoo and she said his eating issues. Since the PPHN is stable and the O is, too, it's now down to eating. Let me explain the eating...

They switched his fortifier over to one that is already partially digested. They are hoping that this will be easier on his belly and that there won't be any pga left before his next feed. Whenever there is pga left, they have been subtracting it from his feed (as we've said). This is causing him to not get full feeds, which then causes him not to gain enough weight. So, Frankie needs to have all his food digested so that he can get a full feed each time so that he can gain weight. I asked how much weight are we shooting to gain each day and she said 30 grams. He currently gains about 20 grams a day but since he is still spitting up, some days he looses and it becomes a wash. Once we get consistency with his eating and he keeps growing then we can go to the zoo. This is definitely doable in the allotted time frame! Let's just pray it happens!

He's still on .1 oxygen and his usual meds. He did have a weird moment today that kind of startled Joe and me. He was sleeping in Joe's arms and then all of a sudden woke up and was breathing extremely fast (over 100 breaths per minute) and his heart rate increased a ton, too (over 200). He breathes fast anyway and always will (due to the shape of his chest), but not that fast! We gave him some time to see if it would go down on it's own and it wasn't. He was just lying there, too. No crying, vomiting, attempts to poop, nothing. His face was also a little flush, too. So, I went and got the nurse just to check things out. She took a listen, all sounded good. His blood pressure was good, his temp was good, he was comfortable, not crying or anything. It was quite strange. The nurse got the nurse practitioner just to take a look and she said all the same things. His stats eventually went back to normal and he's been fine ever since. His oxygen saturation never decreased through all of it. We aren't sure what happened, but he is fine. It would have been one thing if he was mad and throwing a fit but he was just lying there.

Frankie got to meet aunt Beth today! Man, it's so good to see her! She's such an amazing person and I'm so glad she finally met him! Tomorrow he will be meeting Ben and Hannah! Can't wait! :)

Love to you all!