Ellie in her birthday and Halloween costume. All she could talk about for months after Brave came out was how she wanted to be was she just had to be Merida. So Celidah and Jade helped to make the cape for her while I made the dress. The fabrics and colors were Celidah's choice.

This is by far Ellie's favorite outfit and because of the way this dress was made she is able to wear her dress to church, while playing, or even to Dr. Appointments. There are sometimes I "encourage" her to wear this dress especially when I know she will need a "braveness" boost and it seems to help her. She absolutely LOVES being as brave as Merida is.

These pictures were taken at a park just a couple blocks from our house.




I love her smile here and how her "wild" here just falls everywhere



This one of my favorite pictures because here she looks so free from everything



LOL here she is showing her attitude as some neighborhood boys ask her if she was Mulon, and then ask Cinderella, and several other names that are wrong. I love this "seriously, did you just really ask me that?" look...



Here she was bummed and annoyed with me because it was time to head home "already" I guess 45 minutes of pictures was not enough hehe

Dating back to August 26th I caught Ellie with a smile (because I had a camera). It was supposed to be her first day of school and her biggest worry was having another procedure done and if she was going to be able stay awake long enough or even focus on her school work. (She did not know I left it all at home.)

The nurses let her know that no school work was required from her that, and if needed they would give her a note. At this Ellie, looked puzzled and informed the nursed "but I am homeschooled." With that one of the nurses came back with a special "note" for her releasing her from all school work for 2 days. Ellie giggled, then snuggled back in bed and took a nap before her procedure.

She really did not feel well at all this hospitalization. It was not until after her new button was in, she had 12 cups of apple (she will tell you (but really 2 cups filled mostly with ice), 2 more naps, 2 movies, an x-box game, and some apple sauce did she start asking for some time in the playroom.

I need to update my blog so I will be making a bunch of back to back entries from my journal. So please bear with me for a bit as I get this updated :)

Long rough day

oh goodness what a long day I have had....

To start our day Ellie saw her GI dr (good visit) and we talked about her meds, discovered while she has grown and is now 49 1/2" she has dropped from 23.7kg down to 22.5kg... meaning she has dropped from just over 52lbs down to 49 1/2lbs (sigh)

We are getting her scheduled for a button change (again in IR and under anesthesia) and talked about the major GI surgery to separate her gj-tube into twp stomas. She is against this especially at this time as she has so many issues already and the complications with this surgery are to high for her. The biggest complication is shutting down her entire GI system and it not starting back up again. (her biggest fear with Ellie). Not to mention the GI anomalies and other issues we are dealing, she feels this will place way to much stress on her GI system.

We are going to try increasing the rate of her formula further to increase her calorie count and HOPE this helps and keeps her growing.

Ellie was very brave for her blood work today and did very well despite her fear of needles. This was the first time she did not fight with total thrashing and kicking. Instead she sat crying and almost screaming but they got her blood. Only one was needed to hold her arm, one to draw the blood, and today she got to sit in daddy's lap with a daddy hug to help her sit as still as possible.

My GI appt today did not happen. I had rearranged physical therapy for our 14 yr so I could make it in time, yet did not  I left at about 3pm to arrive in time for the 4:30 appt. I figured with a 45-50 NORMAL drive if I planned 1 1/2 hours I would at least arrive close enough. Not even so... I took e 2 hours and 15 minutes just to arrive. I went anyway hoping to reschedule, but was given a number to call and told my dr has no openings for quite some time and especially because I totally missed it I have to wait now (grrrr) the receptionist would not even let me talk to the nurse while there and just told me to call back.

So I called the number to try and reschedule and the nurse will not even be in tomorrow, so I have to wait until Monday now 

I am just glad I saw the car that decided to cross the road in front of (without warning) before I t-boned it. I think I missed that car by only 3-4 feet. Not a distance you want to miss a fancy sports car with a GMC Yukon.

Adventures of of our Tube Fed Monkey Continue

Ok throughout today we had many things change at simply a whim... Let me trace back (through facebook) and try to place my day in order.

Around 4am the dr's came in and gave Ellie an enema and started Golytele through her g tube (very strong miralax). The effect of this combination did not take effect until about 9:30. Suddenly she was breaking loose.

During the night she not only had a KUB (x-ray) to check for j tube placement, but a KUB with contrast as well. The initial KUB only showed 1 possibly 2 kinks, yet the KUB with contrast clearly showed 3 kinks and damage to the j tube as well. When looked at in slow motion it was clear her j tube was leaking. The decision to admit was for sure by this point.

I am sure the low blood pressure, low heart rate, low blood sugar levels, and her lack of energy had something to do with the admit as well.

During the morning rounds I discovered that last night she had been given 3 IV boluses for her blood pressure and heart rate, and the fluids brought her glucose levels up from 51 to 60. By the morning rounds these boluses and the additional IV fluids had finally stabilized the most concerning issues throughout the night.

Shortly before leaving for the IR placement of her new JG tube she was showing a bit more of her normal spunk, but still was quite listless and quiet. She had only asked once to go to the playroom but had not pushed the issue so we did not either. Rest was needed more than playing (even though hospital playroom is not very active).

By the way IR is Interventional Radiology and a dept set up just for the placement or use of procedures requiring specific x-ray equipment and sedation (as needed) for the procedures. Our Ellie-bug is one of those little ones that needs the sedation, intubation, and extra monitoring during these procedures.

Once with IR they offer the children different scents (chapsticks) to use to fall asleep with. Well Today Ellie-bug decided she wanted strawberry-watermelon. With the request made they scented her sleeping mask and the smell was not what she expected. So the team loaded the mask with extra watermelon for her. Our now happy child told the entire IR team about our family vacation, seeing her cousins, aunts, uncles, and of course "Mount Mushmore", and the Multnomah fire falls we saw in Or.

Due to maybe 2 hours sleep before her procedure she was out faster than I have ever seen her nod off. Once she was out I waited the normal hour- hour and a half (no clue on time today) to be called back to wait for her to wake up. Once all her vitals looked good and she was awake a couple of times she was taken back to her room.

From there we waited in the room for an hour or so, she got to drink a small amount of apple juice, and eat some applesauce. Once this settled she was released.

So where do we go from here? well we are working on the fluids through her j tube again and we have to make sure she does not become constipated again. What caused the murmur the dr's heard last night, the low blood pressure, heart rates, or drop in her glucose levels? At this point we are not sure.

Does she have a heart murmur to monitor, or is this going to be a stressed based situation? If stressed based then chances of the murmur reacting again once she is dehydrated, stressed, backed up, or any number of things, means the murmur may still be hiding somewhere there.

Additionally, at this point we do not know much of this admission was heat, letting her eat more by mouth than normal, the stresses on the body of extended travel, dehydration related or any combination of the above.

Long Night

Many times now I have helped get Chantelle situated in her room and run home for things due to unexpected admissions. Most of my midnight runs have allowed me the needed time to take care of what I needed and return long before she was even awake.

However, tonight while at the house I showered, wrote down the needed meds and doses I did not have the names for, found the computer, tablet, chargers, and cell phone charger, and a few other things I needed to dig out of the still unpacked vacation bags and boxes still sitting in the front entry (music/library room) and returned. Both directions I-95 was slow as rush hour traffic due to construction that blocked up all but 1 lane each way.

Needless to say, even though I had the requested stuffed animals (did not find her special scrubs due to not wanting to wake her sisters), Ellie was not a happy camper when I returned.

I think this is one of the few times that she has been in tears when I returned. Apparently she started crying shortly after I left and nothing was going to work to calm her down, except my returning back to her room.

Poor child is going to be SO exhausted tomorrow as she has not slept yet tonight. Normally she is out by 8, 8:30. We are going on 5:30 now...

This may be a long exhausting stay...

Ellie has once again been admitted. We entered the ER about 4ish our time and she was admitted to a room around 1am. 

So far what we do know is that her j-tube is kinked in 3 places. (How we were able to keep fluids in her throughout our is simply a blessing) One of the kinks is broken so fluids were leaking and backing out into her stomach, causing her to fill ferral bags with yucky looking green stuff.

Her blood sugar levels are down to 60, and her blood pressure is also very low. Her bowel illeus is back again and with a vengeance. 

They are working on trying to get her cleaned out and clear the illeus tonight. Depending on how fast the fluids can be pushed and tolerated through her g and j tubes will determine how quickly her little body gets cleaned out.

As far as how she is doing, well she is very tired and her only question (with school starting tomorrow for her brothers and sisters) was

Ellie, "Mom with homeschooling am I allowed to naps?"
Me, "Yes Ellie you are allowed naps, that is why we are homeschooling you."
Ellie, "Oh good, because I am so very tired and not sure I can do much with school tomorrow."
Nurse, "Oh sweet heart when you are in here I am sure school is something you do not have to worry so much about."
Ellie, "Oh good, because in class I get tired but cant nap. And when I am here and have to go back I have to make up the missed work. Now it will be different right mom?"
Me, "Yes Ellie, that is why we are homeschooling. Now close your eyes and rest for the night."

She was tired enough today that she slept in until about 1, then was up long enough to shower, dress, and get ready to be taken in. She slept the whole way to John Hopkins, and asked to ride in her stroller because she was to tired to walk.

While in the ER she just laid there and did not really talk to anyone (other than to tell the nurses and doctors about her throwing up). When we went for the x-rays and other tests again she refused to walk. Totally abnormal for her. We will see how she is feeling in the morning. Hopefully much better.