Change my button

This past week has been not only long but also frustrating. Last Wednesday I was called to the school to pick Chantelle up because he had a headache and was running a fever. Since I was in physical therapy, I did not get the call right away. After brining her home, I gave the needed meds and put her to bed where she could rest.  Everything seemed to be ok when I put her to bed. Her feeding tubes were flushing, the J-tube flushed fine and the pumps were started. So, off to bed we went.

Then next morning her pump was still running and I was not sure if more milk had been added or if the pump had been pumping but not pushing the milk through. Thursday morning I prepped a new bag for her feeding pump bag, gave her meds through her G-tube, and tried the J-tube meds. Nothing was happening. 

With nothing going through the J-tube I tried to flush the J-tube and Ellie just giggled as the water sprayed out of the extension. We changed the extension, again nothing. Hmmm… slip-tip syringe into the J-tube port and push… still nothing…. Plunger method… pull the syringe and try to loosen the clogged area. (getting really frustrated now) still nothing…

By this point, I had tried everything I knew to try and started calling and texting friends for coke as we have no bottles in the house (we are not normal pop drinkers) and well our friends are the same way.

Frustrated, I called the peds office, the GI office, the makers of the feeding tube, left a message on facebook, HOPING that someone else would have more ideas beyond what we had already tried. With all the methods we had tried at home being the normal methods and the final methods to unblock or check for kinks only able to be done at the hospital, the peds office told us to take her to the ER.

Off to the ER we went with her extra feeding tube in hand. The Dr on call was not sure what the exact protocol for her situation. I knew she needed a KUB (stomach XRAY) to check for line placement. They also had to go through each of the methods we tried at home including one called clot buster. Nothing was working. We spoke with several people; however, we did not speak with anyone from GI. Before we finally left we did have a pending IR appointment. The appointment was pending because we did not know if they would have room for her on Monday or Tuesday.

Yesterday, was her IR appointment to get her clogged tube removed and the team placing her spare tube. I left with Ellie and Ava and we headed to John Hopkins. I have no idea what was going on with the parking garage, but it took a good half hour to navigate the mess of cars, and find a place to park.

Once Ellie was checked in we waited for her to be taken back for her pre-op procedures for her GJ-tube change. As soon as Ellie said she had to go potty, Ava started whining letting me know she too had to go potty. The nurse in charge of Ellie let me talk Ava out while she started some of the pre-op (procedure) things that needed to be completed. As soon as Ava was outside, she went potty. Once back inside, both girls were happy and comfortable.

Well,…that is until I went into the procedure room and left Ava in the hall without me. Poor puppy had no idea how to react. I clipped her to the bed that Ellie came down the on, told her “Ava down,” walked away, and went in to help Ellie. At this Ava freaked out, started whining, howling, and barking. I went out to try and calm her, turned around a went back into the room the exact same way. With this the nurses let me that her barking would not bother them at all.

As soon as I was home we took Ellie inside, played with Ava for a few minutes then Ava and I went to the school where they had dance classes. Once dance was over was over and I could finally rest. By the time meds were done and formula mixed for the next day it was already 9am.

Very Long Day

Yesterday was a very long for us that started out as a normal day. We woke all the kids up for school like normal each day, had them shower and dress. This is when things became interesting. 

I prepped a new bag for Ellie's feeding pump, hooked her up and the pump alarmed right away. With pump alarming a flow out error, I checked to make sure there were no kinks, hit run. Same error right away. This time I removed all the tubing from the pump reset and and tried again. Same error (sigh)... This time all the tubing was removed, her extension removed, everything primed again, new extension, same error. (UGH)... This is when the frustration set in and I told the boys they would be catching the bus and their sister not.

At this I started trying to push water through the J-tube with the extension and this just resulted in water spraying in the front room and a giggly child. After several attempts I then moved to the slip tip syringe right in the button. Using pressure only sprayed the water made Ellie giggle, plunging made her giggle as the syringe popped out. By this point offices were starting to open. I called the GI office and left a message however, with no real voice it was hard for the doctor to understand. I called the peds office and they told us to just take her to ER as they can't do anything more than we had already done. 

Unfortunately due to budget cuts we could not take her to our local urgent care clinic for a KUB to check for a kink in the tubing we had to take her to the ER. Well for Ellie this meant taking her to Baltimore, to John Hopkins Children's ER, where her specialty doctors are.

After a very long day I was to exhausted to post anything last night after our ER trip with Chantelle. Turns out her j-tube is clogged and totally unusable and the soonest her G-Jet can be changed is "possibly" Monday or most likely on Tuesday. We let the ER know everything we tried, and they also tried each of those methods with the exception to the KUB and the clot buster. They also tried these and nothing worked.

While she does have her g-tube she does not typically digest her formula properly or at a high enough rate to allow for weight gain and growth. Because of her functioning g-tube we are home with her and running fluids as much as possible, and trying to get her to drink water and eat ice cubes to fight off dehydration as much as possible. While hesitant, we all knew home would be the best place for her this weekend. At any point if I feel we are not keeping up and start losing the battle we are take her back and they will admit her and place an IV until her tube can be replaced. 

Sadly while we were SO excited to have seen her get sick and tolerate her new formula Elacare Infant, while sick and not have to totally drop the formula and give only Pedialyte.

Google Attack...

This morning we got the kids ready and loaded in the truck to take them to school for the Read Across America Day, and just as Frank and I were about to get in the truck i got a very strange text message.

"Your Google verification code is (numbers)" At first I was puzzled, then shocked. Suddenly, I realized that someone was trying to hack into my Google account.

Quickly with Frank's help we gathered my laptop, charger, and other things in case I could not long into the internet at the school. At the elementary school I was able to log in and change passwords. I then went and read to 3rd graders.

A couple more "Your Google verification code is...," shortly followed by, "Your Google log in password incorrect." By this point I was not only upset, getting a bit freaked out, yet VERY VERY glad that I have my Google set  up with the very annoy multi-step verification process. Because of this process I was able to protect my accounts this morning.

After returning home I contacted Google customer support and they found out that i have not compromised my computer in any way. there is nothing downloaded anywhere that would allow an attack from the inside out. Sadly this was a deliberate attack from the outside in.

Birthday Party with Friends

Today Ellie had attended a birthday party with one of her newest classmates in school. Omar has become another very best friend to her because he too is like her in some ways. While Ellie eats with a feeding tube, Omar moves around in a wheel chair.

The kids had a blast during the party and the kids energy level was very high. Omar was so excited to have 10-12 of his new classmates show up to his party. For him this was so exciting because he has only been here in MD for just over a month.

At the party the kids were delighted to have Lucky the Magical Clown painting faces and twisting balloons. Her face painting was amazing and the balloon twisting was also very good. What I was most impressed by her was her patience with the very energetic kids, and how they responded to her. While she was twisting the balloons she involved the children with as much as she could. Today's party did not have any magic tricks as there simply was not time for balloon twisting, face painting, and magic. For more about Lucky the Magical Clown see her website at http://www.luckythemagicalclown.com/

The hardest part for Ellie tonight was the fact that she is back to nothing but her formula, ice, and water again (ice and water in very small amounts). She was wishing she could have food with her friends. Yet she had a blast with a good number of her classmates showing up for Omar's party today.

For me the weirdest part was realizing I am now in the group of parents of older children, and no longer fit in the group of parents of young children. Ellie was one of the oldest children there today, and is our youngest. Somehow this transition has happened without my realizing it happened. Still trying to figure out exactly when that happened as I do not recall that happening LOL...

Family Pets or Working Dogs

Last night I had the opportunity to teach kids at church about the differences between family pets or working dogs. The girls I was teaching were all amazing smart and knew more than they realized.

While we are in the process of training Ava our German Shepherd, to be a service dog, we have discovered that most do not understand the differences between family dogs and working dogs.

When most are asked what a working dog is the first responses are police dogs, fire dogs, farm dogs, and search and rescue dogs. The other working dogs that are not often thought about are right away are therapy, service, emotional support psychiatric, military, cadaver, drug detection, boarder patrol, guard/security, animal herding, show competition, sledding, hunting, dog sports, and dog comfort, service and obedience training.

Just like with jobs humans do, there are many different jobs that dogs can do. Also just like some people have a need to remain busy and active, some dogs breeds also have a higher need to keep busier and work harder.

We first talked about hygiene and the importance of brushing hair. For a dog brushing the hair serves several important purposes. The kids brought up some of the most important reasons. Dogs hair like theirs needs to be brushed to keep the tangles, fleas, ticks, and other unwanted critters out. Also brushing reduces the shedding and hair around the house.

Walking and playing with the animal is very important because like kids their pets need exercise. We  talked about not giving to many treats. They made funny faces at the thought of just sitting and being quiet, then being given candy, cookies, cakes, or other treats every time they were asked to be quiet. Then funnier faces at the thought of not just one or two treats a day but five, six, or even eight treats they had to eat everyday and not be allowed to exercise.

Then about this point we discussed the differences between pets and working dogs. We talked about places where family pets are allowed. Petco, PetSmart, and the Vet are designed for all animals. Then we talked about places that would be weird if everyone just brought their pets. The kids giggled at the thought of everyone bring their pets to church until we talked about different pets like spiders, snakes, scorpions, and the noise of everyone having a cat or dog, or what would happen if a pet had an accident on the carpet. Suddenly the thought of pets in church was not so funny.

So what are some of the working jobs dogs can do?

Family pets can do a wonderful job working around the home and the farm.  These family pet/working dogs are the dogs that protect the family property, are protective of the family members, especially children, or parents while running or walking.

Animals with more training and specific skills that need consistent training, and working with are performance, animal herding, show competition, sledding, hunting, and dog sport animals.

Police, fire, and search and rescue, military,  cadaver, drug detection, boarder patrol, and customs dogs are all trained to work with specific emergency, law enforcement or military forces to help with a variety of tasks as needed for patrols, rescues, or missions.

What is the difference between therapy, emotional support, service and psychiatric?

Therapy dogs are trained specifically for providing comfort, affection, and support to individuals in schools, nursing homes, hospitals, ER's, hospice centers, and libraries. Service dogs perform functions and tasks the individual with the disability cannot individually perform. Therapy dogs are not service dogs and are only permitted in schools, nursing homes, hospitals, ER's, hospice centers, and libraries as set up with therapy dog handler. Business owners are required to permit therapy dogs into businesses.

Emotional support animals are family pets providing an additional level of therapeutic benefit to the owner. This animal offers emotional support through companionship and affection. These animals do not require additional training, other than to be among other humans without being a danger or a nuisance when in public. Emotional support animals are not recognized as a service animal and business is not required to admit to the animal into the business.

According to the Department of Justice, beginning March 15th 2011, only dogs are recognized as service animals, a service animal is a dog that is trained to do work or perform tasks for a person with a disability, and the service animal must be permitted to accompany the individual with the disability.

Service dogs are specifically trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability. Psychiatric service dogs are trained to perform tasks to mitigate psychiatric disabilities of the disabled individual. Service, Psychiatric, and Neurological service dogs are all covered and protected under ADA laws and protections.
   *   Businesses are required to recognize these service animals and admit these animals into all places of business.
   *   Limited questions may be asked concerning the purpose of the dog and individuals disabilities.
       1      is the animals a service animal due to a disability
       2      what task does the dog perform
   *   allergies or fears of dogs are not valid reasons to deny access
   *   inability to control the animal, or lack of house training are the only valid reasons to tell a disabled individual to remove the service dog
   *   service dogs must be allowed in public areas where food is prepared or sold
   *   people with service animals cannot be isolated due to the animal
   *   additional fees may not be charged (unless the animal causes damage)
   *   staff are not required to care for the animal (only the disabled individual may care for his or her service dog)
   *   http://www.ada.gov/service_animals_2010.htm

Sunday with a Toddler Dog Training as a Service Dog

So we have been training our dog Ava to be a service and in most areas she is doing amazing. She is also a very smart dog.

Sunday I decided to take her inside the Cultural Hall where the rest of the family was as we were running late. Annoyed  once she discovered this would be another time where she would be laying down a lot again she did her normal stand and flop thing. Except this time her flop echoed. Promptly she stood up again, I motioned for her to lay down while hiding a treat in my hand. Once again she suddenly flopped to the floor with a loud "THUMP!" A third time same thing stand and down with a loud thump.

Suddenly, as if a light bulb went off in her head she looked up at me, without any direction, stood, looked again, and plopped without any direction causing a loud enough "THUD" to make others look around.

At this point i was already gathering my stuff and getting ready to this mischievous toddler puppy out to the foyer where if she wanted to flop she could and she would not make noise. As soon as we were back out on the carpet she slowly slid into a laying position and laid down in her pouting position.