Game Plan for day Three

Goal for today: Increase the pedialyte rate by 10ml's every 2 hours (as long as she tolerates the rate increases)

if she tolerates the full rate increases to the target goal by tonight or tomorrow slowly decrease pedialyte and increase Neocate Jr formula this weekend. Then start trialing Elecare formula early next week...

Also a major J-tube disaster was averted by a simple question to the nurses. The orders for meds to not be placed in her J-tube and only in her G-tube had not been specified, and so I had been asking if we were supposed to be placing meds in her J-tube yet due to volume issues. Well because of this they had been placing the meds in the g-tube portion.

Then this morning her compounded prevacid I asked "are you sure the prevacid goes in her J-tube? Doesn't it need to be put through the G-tube to help with stomach acid? In J-tube how can it help with stomach acid?" With a puzzled look the nurse went to ask someone else and she came back letting me know I was right that it does need to be in the stomach, not the intestines.

Then when the GI dr's came this morning they made sure the nursing staff knew how to handle the G and J tubes, what can be pushed a larger and faster rate and not, what rates go where, and when and how to increase. Oh and they made sure to change the orders to NO meds in the J-tubes ONLY G-tubes!

Starting Day Three, Still Admitted

Ellie has pedialyte running at a rate of 10ml's now in her J tube and they started that over night. All her meds went into her g-tube last night.

Also this the 2nd blood draw she has had and this one went much better. She is still fighting them but but I am barely having to hold her down now. I am now able to calm her down with a gentle touch and quiet voice.

The toy she has chosen from the playroom to bring back with her is a crib toy that puts a lighted picture on the ceiling with giraffes and quietly plays some of her favorite nursery rhymes. When she found that one she was all excited and told the Child Life person she loved the songs and how they sound. Then when she was told she could bring it back to her room that made her so happy.

One of the highlights here for Ellie is she has made a friend here. A little girl just a year older than herself. Both girls love to play with each other in the playroom and create Halloween decorations together. We are hoping the Great Room (or big playroom) is open soon so the kids can play in there together.

Ellie has done amazing this admission. So many things are happening to her that before she would not have allowed or tolerated, and her sensory issues are not taking over; causing her to freak out, have panic attacks, kick scream, or try to fight the staff here for the testing.

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.