G-Tube Update

Well....Ella officially has a G-tube now. I think the most traumatic thing was prior to the procedure when I walked in to the procedure room and she seemed to know that something was up. But once they gave her the magic drugs, she slept peacefully. Within 15 minutes, the doctor came and got me from the waiting room. Ella was still asleep when I came in the recovery room but within a few minutes, she woke up and I think this was easiest wake up from a procdure yet. She started watching her video and talking to me like everything was fine. She is back in her room now and just hanging out. She doesn't appear to be in any significant pain. She was asking to get down on the floor but she has a drain coming off the G-tube for the next 10 hours or so and therefore I think we will need to stay put for the rest of today. So hopefully we get through a day or two of some pain and then we will be able to enjoy the benefits of having a G-tube. The plan is to give her a feed early tomorrow morning and as long as she tolerates it well, we should get the all clear to go home after that. Then we will have a home health nurse come out with supplies and get us all set up. Thanks for all the advice and support over this pain in the butt issue.

Here she is just minutes after the procdure. Still sleeping

peacefully in the recovery room.

Here she is about 30 minutes later back in her room

and watching movies.

Please Don't Be Jealous!!!

But we got to meet the beautiful Arina Rugg today (well actually yesterday as it is after midnight as I post this). Can I just tell you that I am so in love!!! What is it about these precious kids that are adopted from Eastern Europe that just melt my heart!! Little Arina is the sweetest, most gentle little girl. And boy is she tiny!! Lacey always said that she was but you just don't get the perspective until you see her in person. Her family is doing Disneyland for a few days and happen to be staying less than 3 miles from the hospital. After their day at Disney today, they came to visit Ella. Unfortunately, Ella was a bit grumpy at that time. We went down to the lobby to visit with them and she was simply unsettled. So Lacey and I brought the girls up to Ella's room so we could get a few pictures of them. Ella was very sweet and gentle with her at first, then they shared the DVD player for a bit and then Ella decided to have some fun. Arina was sitting right next to her and mind you, she is just getting good at her sitting. Well, Ella gave her a little loving nudge and Arina just sort of fell over to the side. Ella thought this was quite funny and kept doing it over and over again. They were in her bed so it was a soft landing and to be honest, I don't think Arina minded at all :) Have I mentioned that I am in love!!! After their hospital visit, we left daddy here at the hospital with Ella and the big girls and I went to have dinner with the Ruggs and then went back to the hotel to hang out with them for a while. Since I didn't have Ella, I got plenty of snuggles in with Arina and got to sit on the floor hanging out with Jax too. Are you jealous yet? If not, here are a few pics to help you fall in love with her too!!

Checking each other out.

If you look closely, you can see a black and white polka dot

arm back there, giving Arina a little hug.

Attempting to get a picture of the two of them looking...ha!!



Probably the best attempt....

Watching TV together

Abbey holding Arina...she is in love too!!

Ella will be having her G-tube surgery at approximately 10 am pacific time so please keep her in your prayers that everything will go smoothly like they think it should. Then hopefully another 24 hours and then we can break out of this place for a few days. But it will likely be less than a week as she is all ready to start the next round. But we are kind of okay with the short break as it will give us a fighting chance at being home for Christmas. Tomorrow the big girls are going to Disneyland with the Ruggs and I am hoping to meet up with them once Ella is out of surgery and awake. We will also get to see Emily and her family too!!

Update And A Whole Lot Of Pictures!!

I just couldn't bring myself to start off this post with the yucky pictures so I decided to put my new favorite one up first. Anyhoo........here is where we are with Ella and the feeding issues. It was decided a few days ago that we were going to go ahead and put a G-tube in Ella. For those who are unfamiliar, this is a tube that goes from her abdomen directly in to her stomach. Yes, this is a more invasive surgery than just putting a tube down her nose but since it would be in the stomach area, it would be much easier to cover it with clothing just as we do her central line. And besides, who wants a tube covering up that cute face of hers!!! This is where it got a little bit complicated. In order to put a G-tube in, they need to do an Upper GI scan just to check to make sure everything is okay in her abdomen area. Well...in order to do an Upper GI, you have to drink a contrast fluid. Ha!! Isn't the whole reason we are doing this because she won't drink anything??? Sooooo, today, they decided to sedate her and put an NG tube down her nose so that they could give her the contrast that way.

Well, they had to wait for her to wake up before they could give her the contrast so that she wouldn't accidentally aspirate the fluid into her lungs. How, you ask, did they keep her from pulling the tube out as she was waking up? By putting no-no's on her as shown here...

and here!! (notice she is managing to carry that

darn diaper though)

Basically, the poor thing can't bend her arms up to reach her face. But my mom said that it hasn't seem to bother her much and that she has figured out how to do almost everything she wants to. Unfortunately, she isn't able to blow kisses which is a real bummer as that is what everyone in the hospital looks forward to when they see her. By the way, I mentioned above that "my mom said" and this is because, once again, this mother of the year wasn't at the hospital today. They weren't planning on doing this so soon but her numbers were coming up and they hoped there might be a chance of putting the G-tube in tomorrow so needed to get the Upper GI done today. All in all, today's procedure lasted about 10 minutes and it wasn't much more than an xray so I didn't miss much. They have decided to leave the no-no's on overnight so they can try to give her a few feedings through the NG tube and get her stomach working again. I believe they will take them off tomorrow and see what happens in regards to her keeping the tube in or not. I don't think there are many people expecting it to stay in very long but you never know.

So yesterday her ANC was 20 and today it was 175!!! Unfortunately the surgeon wants it to be up to 750 to put the G-tube in so it is highly unlikely that they will be able to do the surgery before the weekend. At this point, they have her scheduled for Monday morning and then we would probably stay in another day just to make sure everything is healing okay. Then they will show us how to feed her using the tube and barring any complications, we should be home before Thanksgiving.....God willing!! We will still be working like crazy to get her eating by mouth but this will be our back up until she does and also to make sure her stomach keeps on working.

Is this not the most pathetic picture you have ever seen? I don't think she is really this sad, I think the photo just caught her this way. She received yet ANOTHER Build a Bear today through a different organization. I am sure it was just the right thing to make her feel better.

Now for some catch up from the last week in pictures.

This is one of Ella's feeding therapy sessions. The
therapist is using Elmo to help Ella want to eat. They

started off with a hug.

And then a "high five"

Now Elmo is attempting to feed Ella her bottle

Pondering whether or not the strawberry formula is

acceptable or not.

Now it is Ella's turn to feed herself. I believe she is praying

for the strength to make herself stick the bottle in her mouth.

Sorry for the bad quality of this picture but I thought it

was too cute to pass up. Do you notice Ella and Elmo's

matching "diaper" hats???

Eating at Spaghetti Factory with my cousin Robin who

came in for a visit from Oregon last week.

Here is Robin visiting Ella at the hospital. She hadn't seen

Ella since she was 3 months old.

Emma and her soccer coach

Abbey and her BFF Cami

"Mr. and Mrs. Baldie"

I would say that her energy is coming back,

she is moving so fast that she is blurry!!

Hanging in the sink with Build a Bear

number 1

A completely adorable hat made by a friend of a friend

just for Ella. The generosity of people never ceases to

amaze me!!

I just loved this outfit on her and tried my

best to get a decent picture of her in it. Not

very easy these days when dealing with a

moving target!!

Awww.......

Hmmmmmm....

Do you notice a theme here???? Diapers (don't worry, they are clean ones) seem to be Ella's latest comfort "blankie". She literally wants to be holding one all the time and goes to sleep clutching it as if it were a warm, fuzzy blanket. This child is getting stranger by the day.

No real progess on the eating front. She seems to be working better with her feeding therapist but there hasn't really been any great success in eating that would allow her to get off of her IV nutrition. They have weaned her down to about 12 hours a day so at least we can unhook her for a while each day. Her counts hit 0 yesterday and today was at a 14 so realistically we could be looking at going home by the end of this week. Normally I would be so excited at this prospect but because of these darn feeding issues, I find I am kind of hesitant. It sounds like they would more than likely send us home with the IV nutrition and she would be hooked up to for 12 hours a day...which at least we could do at night. But it sure takes away the excitement of the freedom at home. I keep hoping that maybe she will just start eating once we get home but I don't know if that is realistic. Other than that, Ella is doing well so I guess we should be thankful for that. Thanks again to everyone for all the prayers and supportive comments. They mean everything to us!!!

Notice Anything About This Face?????

Yep!! You got it!! There is NOT an NG tube attached to it. That's right, attempt #2 was a complete failure!!! I am pretty sure that it was a record for the least amount of time a child has left one in. They got it placed in okay and put a few pieces of tape on and then let her rest because she was SCREAMING so hard while we held her down. While she "rested" she pulled it right out..immediately. Don't think it lasted a minute!! Oh, and did I mention that Ella was on Versed, a sedative, at the time. I was holding her arms down and it took all I had to keep her from moving around...I don't think the sedative worked!! Oh well....on to other things. Other things like praying that she will just start eating when she feels like it. Mouth sores are common in kids with chemo and although Ella hasn't had any before and we can't see any in her mouth, they can go all the way down the throat and into the stomach. So maybe she has some we just can't see that are causing her discomfort. Our other option is hoping the feeding therapy team can make some progress but I am not real hopeful on this account as Ella is quite resistive to them. Time will tell I guess.

Petechiae

We started off the day thinking we were going to get a NG tube put down Ella's nose in order to be able to get some food in her stomach. We only ended up with petechiae!!! We haven't seen petechiae hardly at all since before Ella was diagnosed. For those not familiar with the term, petechiae are little red spots that show up when your platelets are low and there is strain in your body such as from crying. As luck would have it, Ella's platelets are quite low just due to her counts dropping and she was crying hysterically while we tried to do the NG tube. Ever since starting treatment, Ella's platelets hold very well other than when her counts are low and I guess she hasn't had any reason to cry so hard during any of the previous rounds when her counts were this low. So, although there is no reason for concern at all at the sight of these pesky petechiae, it still is no fun to see it on her face. You may have to enlarge the pictures to be able to see it very well.

As for the failure of the NG tube, as soon as we had her lay down on the table and held her down, she started crying pretty good, then as they quickly placed the tube in her nose and pushed it down her throat into her stomach, she went hysterical. With her having tiny passageways to begin with, once she started crying, things got real tight and they had a hard time getting all the way to her stomach. Then it would kind of push itself back up as she gagged and cried. They tried it twice and then said that's enough!!

Today has just been kind of a rough day all the way around. It seems like ever since we tried to do the NG tube, she has been grumpy off and on. Oh well, tomorrow is a new day. However, we may try the NG tube again tomorrow using some heavier sedation so that they can at least get it placed correctly. Standby for that outcome!!

As for mommy, I am feeling a little bit weary!! Tonight I had to miss Emma's playoff soccer game and it is times that this that it sucks to be stuck here at the hospital. I just look forward to being able to take care of my whole family in the same place again!!