Update on Jayden 1-25
Well, we haven't had much news except the doctors are concerned about what is going on with Jayden's right lung. I spoke with the pulmonologist and he said he expected the lung biopsy result to still take another 4 weeks or so, so we are just waiting....
Jayden is scheduled to see nutrition, genetics, pulmonology and GI in the next month along with his weight check ups and hopefully over that time, some of the doctors will discover something new or have new ideas where to go.
Dr. K, his pulmonologist said the initial tests on his lungs did not show food particles, meaning it is unlikely he is aspirating food into his lungs. He said if the primary ciliary dyskenesis comes back normal, then we will just have to go back to the drawing board and brainstorm where to go from there.
As far as the feeding tube, he has gained a pound in two months and they were really hoping to see even more gain. We will see. Regardless, it sounds like he will be on it for at least another three months and then we will wean him over a three month period so he will probably have it until at least mid-summer.
Pray he is still gaining weight. His last weight check he hadn't gone up at all, but hadn't gone down, so we will see. At some point if he continues to need it, we may have to consider more permanent options, but we are hoping to forgo that. We really feel if we can pinpoint the cause of the breathing problems and truly treat that, he will gain weight normally (well as normally as a kid with two parents who were sticks growing up would;).
He is sick, as he usually is, but hasn't been on antibiotics or oral steroids for two weeks, which is a miracle. If we can make it to summer and he can have longer periods of health, it should help too.
Beyond that he is doing well. He has taken a few steps and is always getting into something with his brother. They are quite a pair. Ethan does a good job of taking care of Jayden too. He sings him songs (like the Cars theme song) when we have to insert Jayden's tube to calm him down. It is very sweet.
Ethan has taken to calling himself Dr. Ethan and walks around with the stethoscope we have acquired and and syringes giving Jayden medicine and checking out how he sounds. Ethan also takes his baby around for walks after "coming home from the hospital" and imitates a lot of what is going on with Jayden. As far as child development goes, we encourage it because we know it is a good outlet for Ethan to express what is happening every day in his life and with his brother.
I am going to post some fun stuff in the next couple of days and when we actually hear news, we will post that as well.
