Ellie Admitted 10/25/12

...been a while since my last update... 

Our battle of helping Ellie gain weight has continued to linger on.

John Hopkins finally got the new AMT brand G-Jet (JG feeding tube) that Ellie has been needing. We are HOPING, this will help her finally gain weight and grow better. Earlier this month she had gained 2 pounds. However that was WHILE she was on prednisone. That gain was also short lived, and she has lost all that and some again (sigh)...

We are still no closer to getting her little body to accepting more foods. She can still only tolerate apples, pears, and quinoa, but they have to be blended. If she eats apples that are not blended, those have to be spaced out so they are no more than every three or four days apart. If we try for closer together her bowels start to shut down on her. She does the same with the quinoa if it is not blended. So to get her body to accept food we blend it up into a nice apple, pear, or apple/pear/quinoa sauce for her.

Well this takes up to this week when I have been on the phone and have emailed with the staff from John Hopkins enough I have lost track. Between playing phone tag to get appointments scheduled to follow up with her pulmonologist, schedule an appointment with the new genetic doctor that is being added to her team, working with her ENT specialist that deals with laryngeal clefts and other laryngeal issues, her GI team, and several other doctors to get her scheduled in interventional radiology for her GJ placement. I literally have lost track.

Yesterday I was going about my business of getting ready to leave the house to head over to the school and help with our PTA sponsored (I am one of the Vice Presidents) Book Fair... and got a call that they wanted to see her in the clinic to start some of the testing yesterday not today. Knowing the admission was suddenly getting bumped up I rapidly started packing and doing laundry so I had the clothing I needed.

This was happening at the same the military decided our street needed to finally be paved properly. Thank goodness John Hopkins was not expecting Ellie in the clinic ASAP as I was still trapped in my drive by the street paving crew. This lasted just long enough for me to gather together a hygiene, get her stuff gathered, my stuff washing, and talk with various medical team members from John Hopkins 4 more times concerning her admission, procedures, tests, and everything. Next was to call the school and let them know that Ellie needed to be pulled out of school as she had a sudden appointment with her team, then admission directly from the clinic.

So now we sit here in John Hopkins Children's Center as she not only lost all the weight she had gained while on prednisone when she had bronchitis a few weeks ago. She is currently getting the pH-probe done, currently NPO again as we wait for her GJ placement this afternoon.

Also with this admission while she fought, they were able to place the pH-probe without to much trouble. She had her first EVER IV placed while she was awake. Again she cried, but did not fight to hard and they placed it on the first try. She has done amazing.