Crazy busy day

Well today has been busy, yet quite productive. This morning started with my needing to call John Hopkins pharmacy due to discovering the antibiotic we need for Chantelle was not enough to cover the prescribed dose. According to the bottle we had no refills and should have had enough. Afraid I had dosed the meds wrong I called to make sure something had not been done wrong. During this call I discovered they actually owed us more medication even though the med bottles did not reflect this. Also during the call I asked about the medication bottle topers allowing for easy dosing with syringes and more syringes with caps. The pharmacist let me know she would toss in some extras for us.

Thrilled about the fact I had not messed up on the meds and even more thrilled I had found where to get the bottle toppers I really liked and would get more I set the next task of figuring out the DME issue. After speaking with the DME intake person discovered they had no idea about the needed scripts for Ellie’s supplies. With this knowledge I called the local peds dr to see what I needed to do to find out about making sure everything was covered.

I found out the date the scripts were faxed, then forwarded on to Tricare. Unable to get ahold of the local office I next called the GI office to find out if they knew anything. My next step in this task was to call the main Tricare North regional Office and find out about the DME referral, authorization dates, authorization number, our copay and the information that John Hopkins Home Health Care would need to know to verify this authorization. To my pleasant surprise everything that had been faxed in had been approved and was covered at 100% leaving us with NO copay!!!

Right now the only scripts we need faxed back in are for the feeding pump, backpack, and new formula. We have to have the backpack for sure as we moving from the Kangaroo joey to the Infinity pump.

With this information I called the GI office back and left a message letting them know what was needed to be refaxed in. I will call both the peds office and the GI office tomorrow to have both clinics fax in the scripts to make sure the scripts are received. The formula has to come from the GI office as they need to calculate the calories for Ellie, but the pump and backpack can come from either.

I finally got the Mini Buddy Bunny sent off to Bday Bears. We got Celidah from her after school drama thing, dropped by the commissary for some needed items, then as we were heading home got a call from a desperate and very confused delivery person who could not figure out how to get to our house. The sign on the road he was on said all visitors and trucks must use the 715 gate, yet his GPS device would only take him to the 22 gate. He had called John Hopkins several times asking for help and directions and only got more lost and the GPS kept bringing back to the same location. Finally, out of total frustration he called us begging for help. Unfortunately with my partial hearing loss and his accent I had a very frustrating time understanding him. Finally Frank asked, “Is he trying to deliver something to us?” He must has heard this question because he replied with, “I have medication you need.” At this I asked what gate are you stuck at? He let us know the 22 gate. We were then able to get the description of his vehicle and let him know what we were driving.

Lucky for him we were literally minutes away and could meet him to get the meds. We drove past to the first light, made a U-turn met him on the shoulder of the road and got the needed antibiotics for Ellie. Frank was able to tell him how to bypass the GPS and get to the 715 gate next time he delivers to APG. He left, and we headed home. Once the groceries were unloaded we started to rest for a few minutes then got a  call letting us know that Corbyn was returning from Washington DC from his rehearsal.

At this point Poppy and I hopped in the truck and left to get Corbyn. As we were turning on the road toward the school we got right in front of the 2 school busses. Got Corbyn, I got the needed info about the upcoming PTA meeting, talked with the principal about the Mini Buddy birthday party we are holding for Zach in May, came home and now I am exhausted and writing about my crazy busy day…

Pulmonary Update!!

We got a call from Ellie’s pulmonologist today concerning her bronchoscopies. For the first time her cultures all came back negative for bacteria, micro bacteria, fungus, and abnormal bacteria!!! The mucus culture came back positive for mild aspiration despite the no liquids and only purees. This is a HUGE improvement for her especially with her lungs.

The only real changes we are making when she returns to school on Monday is he wants her to have her Albuterol breathing treatments during lunch as she is still NPO until further notice and before she heads out for recess.

Also he wants her to have at least 4 breathing treatments all weekend and make we use her accapella device to help vibrate things out of her lungs. On school days to make sure we do a treatment before school, right after school, and right before bed again making sure to use the accapella device.

Ellie was so excited to hear that she can return to school on Monday. We had been advised to keep her out while we she was on 36ml of prednisone because she already has a lower immune system, and we did not want her system exposed to additional bugs and germs at school with such a high dose of steroids knocking her down lower. (Not to mention that she has been wiped out on such a high dose for her little body.)

Snapped this picture yesterday of Ellie snuggling with her toys while watching a movie. She has not been thrilled that she has had to stay home to recover longer since her throat surgery.

Since she already has a lower immune system and is currently on a very high dose of prednisone. Until her prednisone is gone we want to expose her to as few kids, bugs, and germs as possible.

This seems to be a good choice because even on prednisone, antibiotics, her regular breathing treatments she is starting to cough already. Not to mention the fact that she slept in until 9:30 this morning and her energy level has been lower than normal.