A bitter sweet feeling..

As a mother you never want to see your child have health issues. And when they do, you are willing to try anything and EVERYTHING to make them better. It can be frustrating at times when you feel like you have exhausted all options and she's still not 100%. 

So when they did the trial of Ng tube feeds myself, Anthony, the doctors, and nurses noticed a difference in her almost immediately. Her team wanted to avoid at all costs sending her home on any kind of tube feeds. Obviously it is a HUGE lifestyle change and I agreed with the team at first. She is already on CPAP  and will be going home with an oxygen monitor and oxygen because of her blue spells, that alone can be overwhelming in her daily life.

As I mentioned in my previous post they wanted her evaluated by the swallow team. They came early this afternoon and after watching her feed they decided that she is still aspirating on the honey thickened feeds. They decided that they didn't want her to get another swallow study done considering she has had two studies in the past three weeks and there are concerns for exposing her to too much radiation. The speech pathologist said that regardless of the results of the study it is clear to see that she is aspirating during feeds and after feeds. She said its not safe for her to be feeding by mouth at this time.

Part of the problem is that she aspirates when formula goes down, but she also has such bad GERD that it comes back up and she aspirates on that too. And because it is honey thick the speech pathologist said that the lungs have a harder time clearing that thick of a consistency. They worry about her lungs getting damaged from constantly aspirating.

So the game plan is as follows:

•She will get her feeds through the tube for the next 4 weeks to hopefully give her lungs some time to heal.

•She will then have another evaluation and swallow study. If she doesn't pass then the discussion about a G tube will happen.

•She is now on Prilosec 10mg twice a day (it's her max dose) and they just added Zantac 15mg twice a day (which I believe is also her max dose).

•Over the next 24-48 hours the nurses will be teaching me how to use the oxygen, oxygen monitor, her new CPAP machine (which is more age appropriate than the one Tufts sent her home with), and the tube feeding pump. The goal is to discharge her Wednesday!

This is all completely overwhelming at times. To think my poor baby is incapable of feeding by mouth is sad. It's bitter sweet because I hate to see her in this state, but knowing she will be safer at home makes me feel a bit better.

Pictures from today:

Look of pure determination! She is working on trying to reach for object and is improving every day. Baby steps!

I just had a bath and the mean nurse re-taped my Ng tube, but I am happy now cause I am so fresh and so clean clean!

I believe that is all for today's day. As always I will update as soon as I can.