Update

Yesterday we got another x-ray of Gracie's lungs and the haziness has cleared up, yeah!!! So we have backed up on how many doses of diuretics she receives and hopefully she will be ok. Speaking with Gracie's cardiologist, he now wants to do another echo on Monday at our appointment to see what is going on and hopefully rule out any cardiac issues that may be affecting her lungs and ability to oxygenate.


We also met with GI yesterday and good news---Gracie seems to qualify for a G-tube. I'm thrilled, I am so tired of the NG tube. I'm tired of replacing it every week because the end won't stay shut after being used to push meds and feeds through. I'm tired of Gracie pulling it out because she gets frustrated that it is always there. And I won't have to feel like I'm torturing her every time I have to place the tube and she screams and holds her breath, then looks at me with her big beautiful eyes with such a look of hurt and betrayal in them.


I hoping that with the G-tube Grace will hopefully start gaining weight and even start swallowing some solid food. She loves having the food in her mouth, but anytime it gets near the back of her mouth she gags it up.

We don't have an appointment yet, the GI doctor said that they are backed up three to four weeks, so we are looking at December. I really don't care as long as we get it done this year, since we have reached our deductible.