GI Issues start Again

Looking back...

This time the GI issues started on the 8th but at that point only mildly. On Monday I was at the school for a 504 meeting concerning the treatment and care plan for Ellie while she is in public school. We discussed her medical and feeding needs and how these tie into her academic abilities. On Monday Ellie was still ok and not much was going on that we really noticed.

Tuesday September 9th, however, everything changed. I got a call from the school letting me know that she was venting everything out as fast as it was going in and that not only was she venting her formula, but she was also venting green and brown gunk as well. She also had nearly filled her 2nd ferrall bag in under 2 hours, and by the time we arrived. 

A call to Dr M ( the peds office) and her GI team and both said ER. In the ER they determined that she was seriously backed up and a good clean out was needed. Back home we were and we started to the best of our ability the clean out as instructed. Then we were to follow up with GI and Dr M.

When we saw the GI on Friday September 12th during an emergency appointment we were one of our best chances of keeping her out of the hospital was to keep the pedialyte running with 6-8 caps ( up to 1 cup of powder) of miralax in every 500ml (2 cup bag) and if possible he wanted us to have a bag running in both her j and g tubes as long as she tolerated it. (I later discovered that due to my exhaustion I heard wrong. I was supposed to have 1 cup of miralax per liter of pedialyte. Still a lot of pedialyte for her age)

Yes, this is an insane amount for a child. In fact, this is the prescribed amount for an adult to take prior to an endoscopy. For such a procedure, an adult prescription call for 4 cups of liquid to 1 cup of powder, drink, deal with the effects and repeat 12 hours hours later. Normally, for most people, their system is cleaned within 18-24 hours of starting this process. This is not working the same for Ellie though...

We have now been doing this since we returned home from her appointment yesterday morning. The GI doctor told me to just keep going as long as we need because if she was in the hospital they would do the same thing anyway and a large amount will not hurt her as long as I am able to keep her fluids up like I had been working on.

During her ER visit she had an xray take to check her j-tube placement, it was clear that she was extremely backed up again and needed cleaning out ASAP. (TMI part) In the beginning, we thought the process was working and cleaning her out because the diarrhea hit hard and heavy. Well only for about 18 hours. Mind you by this point we had gone through maybe 4 or 5 cups of miralax powder in our child who is barley 60 lbs.

However, now we know things are finally moving through and it looks like things may actually be starting to work through finally. After 2 1/2 large bottles she is pooping normally now? Hopefully, we are able to get her nice and cleaned out for once. If things are not running clear by Monday, despite everything we are trying here at home, she will still have to be admitted for a much stronger clean out.

Monday the 15th we were back to see Dr M. After the KUB came back showing that we had made no progress I stopped the MIralax to give her body a break. Within a couple hours the diarrhea had completely stopped and by Tuesday Ellie was begging for more Miralax because her tummy was hurting and she was feeling sick again.

Wednesday the 17th took us to the GI clinic once again. The decision was made to admit her for the help she needed. However, as soon as this decision was made, it was also cancelled. There were 6 children in the ER waiting for beds on 10S and 3 had waited all night. Ellie was now child #7. Knowing this and knowing she was not in immediate danger, the decision was to send her back home for one last attempt to keep her home. 

New game plan: Make sure to have fluids running at a minimum of 60ml's. Start formula at half strength and run at 30 ml's through her j-tube and pedialyte through the g-tube. If she started vomiting or venting the formula out into her g-tube then we were to take her right back to the ER and have her admitted.

We waited until Wednesday afternoon to take her back. I had a dental appointment that I had to make (and stop rescheduling) and I also had an MRI I could not reschedule again.

Sadly (and as expected by her GI team) she was not able to escape hospitalization. Friday the 19th we had to return to the ER once again and from there we waited until they had a room for her. She had to have the hospital strength Golytely to clean her little body out.\

While she had a short stay this time, the purpose was to clean her out enough to send her back home. The best part of this stay besides the length, is the fact that the staff, her doctors, and those on call could tell that Frank and I know what we are doing with her and trusted us to send her home before she was even tolerating formula. We were given the instructions for working her formula back up to full strength and the rate. How long to work this over so her body is not taxed forcing it to shut down again.

Being treated like someone who not only knows what is best for your own child, but who also understands medical talk means more than many will never understand.

September 4-Feeding Tube Presentation

Ellie was able to give her presentation to her class today. Not only was she excited but she did very well.

The list of items we took for her include:
Poster titled: Pictures from My Childhood (Pictures of Ellie from her NICU days to now)
Mini Buddy™ she helped make for her class
AMT training doll
NG tube, Non-functioning G-tubes (4)
Duoderm (cut into 4 pieces)
several pieces of Tagaderm
Grip-lock (for Ellie)
Foley Catheter- to replicate a J-tube inside the training doll
List of questions from the suggested questions found from our FB groups and Ellie's to each question.
IV pole, extra bag of formula,
Unopened can of Formula and Pedialyte
Empty feeding pump and Ferrell bags

She started out saying that she was going to read a book to the class about her that I wrote when she was in kindergarten. Very quickly, I realized she was taking off by herself without even looking at her book. Periodically, I would ask a question such as "what makes you just like your friends and classmates?" "When you are outside, what do you like to do?" These simple questions kept her on track.

She talked about eating, what she can and how it makes her feel to not be able to eat much at all. Her teacher asked if she has always been able to only a few foods. With this question, she looked at the floor and looked sad. She told her entire class that when we moved here, her doctors told her she was not allowed to eat anything and for a year, she could only have small drinks of water. The school nurse who was also in the room, let the kids know that when she was finally allowed to start drinking again, that she had to mix something in her drinks to make her water really thick.

The kids in her class really like being able to touch and handle the feeding tubes, tagaderm, and duoderm. There were wonderful questions asked today. While the kids loved the cushion-y feel of the duoderm, many thought it was very stinky. They were all fascinated with feel of the tagaderm. When I told them it was a like a 2nd layer of skin, they were not sure what to think about that.

We talked briefly about what a stoma is. I let them know that a stoma is a hole placed in the body on purpose, for a specific reason. I then asked, "Does anyone have your ears pierced?" I let them know the ear piercing hole is also a stoma, because they have to take care of their ears and keep their earrings in or the hole will close up. I also let them know that there was never a need to use the word stoma with them.

We then showed them the training doll, I showed them the tiny hole (stoma) in the front, and then the big hole in the back. They all giggled at the doll with a huge hole in the back. At this point I let them know that Ellie has a special kind of feeding tube that the doctors have to put in and when they do it becomes coiled in her body because it follows her intestines. At that point I passed the doll around so the kids could all see how far down in the doll the "J-Tube) (aka foley catheter) would be in the doll.

August 2013

The adjustments on Celidah's braces are coming along. She has a couple stubborn teeth that are fighting moving into place.

August 16th, for cub scouts, Zach had to build a marshmallow catapult. The idea behind the project was to see how far he could make his marshmallows fly. Well having already built catapults with the GEMS camp program, I had him think about what he did there to make his work better and what he needed to do differently with what he was given to make his work better.

After some experimentation and playing around he discovered how to make his catapult work really well. He began testing his project with dog treats. After fiddling a bit more, he discovered his catapult was shoot the entire distance of the back yard and sometimes further. He could not wait to try a marshmallow.

He won the prize for the furthest shooting catapult. Ava catching her treats
https://www.facebook.com/video.php?v=844281415583160&set=vb.100000039273069&type=2&theater

August 19th

Yesterday was Ellie's turn to see the doctor so we could get all her forms together allowing her to return to school. While she did well with homeschooling, she has been begging to returning back to the elementary school with her brother and her friends. She has done much better this past year health wise and had a normal PFT (pulmonary function test- how well her lungs work). While her PFT was in the lower range, it still fell within the normal range.

We are hoping that the year away from the school allowed her body and immune system to build up enough that she can handle school without to many illnesses this year.

Not only that, she has grown A LOT! When she was in the 1st grade she still looked like a toddler and was wearing toddler clothing. Over the last year she has grown and gained enough weight that we have had to get rid of all her 4T clothing and she is now in 7/8 clothing and finally wearing children's shoes. She could have worn size 2 shoes and maybe worn them just fine, but we went ahead and got her tennis shoes 2 1/2 to let them last longer. Her 1 1/2 church shoes are still ok.

Yesterday as she was sitting on the exam table and talking with her doctor he and I, at almost the same time, told each other how big and grown up she is getting. He said he could not believe how much she has grown since we arrived here. At the age of 6 she was barely 35 lbs and all skin and bone. Now she is almost 9, 58 lbs, and the average size of 3rd grader.

Her coordination is still not the same as most kids her age, she gets tired and sick very easily, and her body just runs down fast. But on the outside, she looks like a child 2 months from 9.

August 22

Today Ellie had her follow up at Johns Hopkins where we saw her GI dr. Both Ellie and her GI were excited to see each other. Her dr was happily surprised with how much she has grown.

Dr A and Ellie looked at her weight and growth charts together on the computer and Ellie was curious about what the numbers and lines meant. Dr A was wonderful with explaining to this almost 9 yr old child what was being measured and why this was important. Most exciting to both was when Dr A told Ellie that her height had jumped from 32% up to 58%. Her weight has also jumped. I forget what her weight was but her weight is now 33%. Looking at her chart, Ellie has grown 6 inches in the last year and gained about 10lbs. No wonder this child has needed an entire new wardrobe for school.

When she ended the 1st grade, she was still wearing 4t clothing and barely at that. Pants she had to wear a belt or pull up, sometimes both just to keep her pants up. She is now wearing a 7/8. Looking at her pictures I knew she had grown, I just did not know how much until today.

She was also as brave as she could have been for the blood work she needed today. Coming from a child who used to have full out panic attacks, today she did not. She still freaks out badly and fights the blood work, but not as bad as she used to.

July 2014

During the annual 4th of July pancake breakfast the kids loved the breakfast. The boys helped with flag raising ceremony put together by the scouts. Inside after eating all the primary aged children sang The Star Spangled Banner and were all thrilled to have sung as a group afterwards.

The pancake eating contest was a huge hit again. LOL Corbyn won the Golden Pancake Stack. This trophy was created by making felt gold pancakes piled on each other, glued onto a heavy plastic plate, with a plastic fork and knife also glued to the plate. This plate was glued to a small wooden box and all was painted gold. Very cute creation.

July 13- Thanks to a wonderful gift of Six Flags tickets for the whole family we were able to take the kids to Six Flags this summer. Not only did they have a blast, but Ellie got to ride her very first big kid roller coaster. Every time we take Ava out for long working days she does better and better. She totally loved her task as a service dog at Six Flags. Not only was she "working" but she was with me all day long and able to help as needed.

July 15th, Mini Buddy as an organization is getting closer to having the 501 (c) (3) status we have been working towards. We (currently as of Sept) have the final papers ready and are waiting the final word back.

Trying to update since this summer again. I realized I have done most of my posting on Facebook and not here or on our CarePages site.

June

This summer Ellie got to try her very first sip of soda pop. She was very silly about it and did not quite know how to react at first. (hoping the links work)
https://www.facebook.com/video.php?v=806888312655804&set=vb.100000039273069&type=2&theater

https://www.facebook.com/video.php?v=806888559322446&set=vb.100000039273069&type=2&theater

https://www.facebook.com/video.php?v=806889539322348&set=vb.100000039273069&type=2&theater

Corbyn fell and knocked himself out causing a need for two ambulance rides in one day. The second one however was far from comfortable as he was tied to a board for the whole trip. The xray noticed that he some cerebral damage due to the fall, so he had to be taken to Johns Hopkins neuro shock trauma for further evaluation.

https://www.facebook.com/video.php?v=803951619616140&set=vb.100000039273069&type=2&theater

June 14th, Ellie finished her own tea set so she could have tea parties with her friends. She used the mold and bake clay, then painted each item very carefully. This was one of her last art projects for the school year.

June 16-21 Celidah and Jade attended Girls Camp and both had a blast. Ellie also attended Theater Camp, while the older 5 attended GEMS camp, and the boys Scout Camp. Celidah was a youth leader at girls camp and Jade a 4th year. The boys loved scout camp and they worked on a bunch of merit badges.

GEMS Games, Engineering, Math, Science camp. All 5 of the kids participated in the GEMS program on base this year. This program combines math, science, engineering, and games into a fun packed week where the children work with scientists here on base in the military labs. The kids learned so much about a variety of the different aspects that go on inside the professional science lab. The boys especially were surprised how different, yet fun working as a scientist can be.

Ellie being left out due to her age was unable to do any of the "cool or fun camps" so we signed her up for theater camp this summer. She had a BLAST! Not only id she make some friends, but we discovered some hidden talent inside this little one. We already knew she could sing. Now we know she has amazing potential for onstage productions as well.