What has your day been like?

Today has been a crazy, exhausting, long, yet very productive day.

My day started at 5:45 when my day started. Unfortunately I was unable to get Celidah to seminary in time. However, I was able to make sure everyone else was awake, showered, fed and off to school in time.

Once the older kids were off to school I loaded the younger 3 into the truck, took them to school. Showed the school nurse how to work with the MacGyver'ed feeding tube set up for Ellie (until we have the extensions we need).

With the school nurse as comfortable as she was going to get with the setup, shown how to flush the the j-tube, give meds in the g-tube, arrange the time to drop off the forgotten meds, I headed out. I was then off to Pennsylvania to get the needed money order to finish the application process Mini Buddy needs for our Nonprofit status. After getting lost, finding a gas station, putting the address in again I was getting ready to get back on my way.

Well as I was about to get back on my way our insurance case manager called to let me know the status with our DME and helping us find a new one. (She found a new one YAY!!!)

***We have to switch DME companies because the one the insurance "approved" is actually out of network, and if they realize this we may be responsible for out of pocket expenses, copays, back copays, and other back expenses.*** Yeah... So we are switching before our insurance company realizes this...

So with a new DME found she was letting me know about that. Well at the same time I was letting her know about the frustration we were having with getting the correct extensions for the new G-J et button that Ellie has and how 3 (or 4) times now we have given the item part numbers and 3 times now we have been delivered the WRONG extensions!!!! Not to mention the fact that we still did not have what she needed. Part of the issue is the warehouse is located in New Jersey and they are backed up with orders and deliveries due to the hurricane. But still getting the wrong items several times in a row is frustrating.

Finally, I got the money order, talked to our case manager 3 more times while traveling back home. Got home with enough time to finish some needed paperwork for the bank and email it in. Gather the needed meds for the school nurse. (Find my training doll the kids put in a bag in my office *yet had NO idea where it was (sigh)**). With this gathered I got what I needed for the PTA meeting today, and headed back to the school to give the meds to the school nurse and get the PTA meeting.

On my out the door I discovered we had a delivery at the door, grabbed that and placed it in the truck. Then while heading to the school I called our cookie dough fundraising person to get some questions answered. Then as I was arriving to the PTA meeting I peeked in the box to discover I had NO idea what the extension in the box were for... the J-tube or the G-tube??? So I called and left a message for our insurance case manager and asked for help.

Well during the PTA meeting I spoke with our case manager two more times (sigh), got the number for AMT, our local rep (He is amazing) and the 1-800 number. I was given the home health nurses number to get help with the extension issue and we were given authorization for more visits to make sure we get the right supplies. (I felt bad taking up part of the PTA meeting dealing with this issue but it needing clearing up).

Left the meeting (a lot was accomplished there too), we have an AWESOME PTA board! Once I got home I started dinner, called AMT found out what extensions I got (yes something was actually right!!!), found out what else I needed. Called Pharmaquip to get the rest of what I needed. )

Talked to our new DME, (they called while I was on the phone with the other DME,  found out we needed to let Pharmaquip let the new company know they can talk to each other (sigh)...hung up with them) Talked to Pharmaquip again... Told Pharmaquip why we "have" to change... h and our case manager called again...

By the time I finally got this posted and dinner done I had spent over an hour trying to post about my crazy day. As soon as the kids are done eating we are off to the church for scouts and church activities....

So what has your day been like?

We made it through Hurricane Sandy (the Frankenstorm) without any issues. The only thing we dealt with was a short time without power (while we all slept). We made sure to have Ellie's feeding pumps all fully charged, even her backup Joey pump before heading to bed. Then once they were charged she was not allowed to have them unplugged at all until the next morning.

So far with her GJ feeding tube, things are going great. She has already gained a full pound. This is the most weight gain she has had in over a year without prednisone. The home health nurse is coming again tomorrow to help make sure everything is still working as it is supposed to be. Last week when they came (one was being trained) they were able to help get the second pump set to the correct settings.

As far as school for the kids they missed almost a full week due to the hurricane, returned for Thursday, then they were all out on Friday and will be out Monday and Tuesday.  Ellie missed school on Thursday due to not having the needed paperwork from the doctors to allow the school nurse to do anything with her new feeding tube.

This new feeding tube has both a  j-tube or jejunal feeding tube and a g-tube or gastrostomy tube. The j-tube skips her stomach and enters that jejunum or the middle section of her small intestine between the duodenum and the ileum. This portion of the intestine is responsible for digesting nutrition. Normally the stomach begins the process of digestion, then moves the food to the intestines for complete the process and allow the nutrients to progress through the intestines into the bloodstream.

However, with Ellie, something is not happening normally. For her little body, the stomach digestion process has to be bypassed and started in the jejunum instead. this new j-tube is 45cm long and is placed into her intestines via endoscopic placement while the individual is sedated and is placed by a interventional radiologist. Another wards this is considered a surgical placement in an IR/OR (procedure room). Depending on the patient the J-tube placement times varies based on the intestinal placement.

With her J-tube she has her elemental formula (Neocate Jr) running into her body. She is now slowly gaining more energy. She also has her g-tube where we have been giving her medications and running Pedialyte when she has not been drinking as much.

She still amazes us with everything she has been through and the fact that she is always so happy and cheerful regardless. The other children too have been amazing. Not only with their sisters and brothers but everything we have been through as a family.