Mommy knows best

Well hello again, this week has been a little tough. Johnny just hasn't been himself and his weight keeps fluctuating significantly. He gains a lot, loses a lot, gains a lot, etc., etc. He has been extremely fussy and gassy. It has been hard for me to see him be so upset and not really be able to do anything about it. I have found that if I put a heat pack on his tummy, wrap him up tight and hold him he does better.

I have been so frustrated with the doctors and nurse practitioners this week. They switched the fortifier they put in his breast milk and the next day he started being fussy and losing weight. I kept telling them that the new fortifier was what was causing the weight loss because he spends most of the day screaming in pain. I also kept asking them to take the fortifier out for a couple of days and see what happens. But they didn't listen. So Johnny suffered and he kept losing weight. Yesterday the nurse practitioner (who is a really rude lady) told me that I couldn't hold Johnny as much because me holding him too much was the problem. BAH! THAT'S NOT THE PROBLEM! IT'S THE STUPID FORTIFIER!! Anyway, I didn't listen and held him anyway. Then they FINALLY switched to a different fortifier and he hasn't had a problem since (with fussiness or weight loss) Take that Dr. Kelly! Mommy knows best. Always trust your gut!

Whew! Sorry about that rant. It feels good to get it out of my system. I have really liked the doctors and nurses we work with but there were a couple this week that drove me crazy!

The past couple of days have been better. Johnny has been gaining weight and he seems much more content. He has had a little trouble with desating (low oxygen saturation) and after the ENTs did a throat scope it looks like he has Laryngomallia (I think that's spelled right). I'm not quite sure how to explain in in a way that makes sense but basically it's that he has soft cartilage that occasionally gets sucked into his throat and makes it hard for him to breathe. Usually kids will outgrow it but the ENTs think having some of it trimmed down (they take about 2 mm off) will help improve his feedings. We haven't made a decision about what to do yet. We don't want to do anything unnecessary since he may just outgrow it. We will keep you posted.

So that's about it. I'm sorry if I don't make any sense. Johnny's problems are kind of confusing sometimes and it's hard to explain without going into major detail and boring you all with medical jargon. But we are pleased with how he's been progressing and hope to get out of the hospital soon! Thanks again for all the prayers and support! I don't know how I could survive this horrible trial without them! :)