Food Challenges...

For an interesting thought process and how our children with severe food allergies respond to "passing" or "failing" the food challenges please read this post http://theallergistmom.com/2012/09/25/the-food-challenge-challenge/ and how this mother and her child have experienced going through food challenges.

Food challenges for a child truly are not pass or fail, but whether or not child's body can handle the foods yet or not. This mind set makes a huge difference in the kids attitudes

Ellie had a weight check yesterday and she is now up to 45lbs. This is the MOST weight gain she has had in a LONG time (longer than I can remember) in a short period of time and not induced by being on prednisone.

We are very thankful not only for this but also for her increasing energy levels. On Saturday she had 2 hours of dance, came home got a birthday present ready for a friend, attended the Scout Spaghetti Dinner activity, then right after that we went to a birthday party at Chuck E Cheese for one her friends here.

Granted she was EXHAUSTED! We did not even make it out of the parking lot to the light before she was out. She was so soundly asleep that when she was taken out of the truck, put in bed and gotten ready for bed she did not wake up at all.

Sunday morning she woke up long enough for her meds, grab some breakfast, and let us know that she was not feeling well at all. (We expected this) then went back to sleep. She did not wake up until nearly 1pm.

Today she had enough energy and was so excited to go school. This is not only a new thing for her but exciting to see her be able to do. We will see how tired she is when she gets home from school tonight.

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.

Home and Prepped for the Hurricane

Well we are home now. We had a short time frame this morning to get all the needed paperwork done, scripts, DME orders, and everything done so we could be discharged and head home. The hospital social worker made sure we had access to medical transport in case it is needed. They made sure we are on the shelter list in case we lose power.

With everything lined up (DME delivery lined up for Thursday if ALL goes well) we were discharged and daddy came to take us home. We loaded everything up, loaded the car up and came home. On the trip home we passed by a huge convoy of trucks and vans with FEMA, Homeland Security, Search and Rescue, and Red Cross. No clue how many were in the group but there were a LOT and they all had their emergency lights flashing.

As soon as we got home, quickly and carefully Ellie was scooped up from the truck and carried in the house as the winds are so string already. (We are having gusts just over 30mph) We also emptied everything we could from the truck and got in out of the wind and rain.

The first thing Ellie did when getting home of course was to run and hug each of her brothers and sisters, tell them about some of her "adventures" then start carving pumpkins with everyone.

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.