Posted (Tina) in All Posts on January-21-2010

Well, the day started with a beautiful sunrise.

Ella has been in a great mood the past few days. She even enjoyed occupational therapy with whipped cream as well as physical therapy yesterday. But last night for her last 2 feeds, she started to complain a lot again. It seemed like a repeat of last week. We went to bed and figured we would see what today brought for us.

Sure enough, by the 2nd feed of the day at 11:40am, she was in lots of pain. Her tummy felt hard and distended. Again, it just seems like it is not emptying. We tried so many things and she was not consolable. The only thing that provided some comfort was holding her. If you tried to lay her down or walk away, she would lose it. It is so hard because it could be so many things. For example, her oxygen requirement has been higher and it appears that her collateral veins are beginning to reappear. If there is increased pressure in her veins from the stints, that could be uncomfortable for her.

It is the worst feeling to have a child that has an ailment. Even more heartbreaking is not knowing what is wrong and then facing the reality that there is nothing you can do to make it better. Ella is so complicated which means that it could be so many things. I feel like we have to review all the clinical symptoms and “do rounds” before Josh and I can come up with our hypothesis and practice medicine.

Once we were 99% sure that food was the culprit (2 hours later), we decided to vent her. Even by this time, her belly was still firm to the touch. Even though we fed her 235ccs at 11:40am, here it was 2:40pm and we easily vented 275ccs without a problem.

Sorry for the picture, but it is a good visual so you can see how much fluid was in her tummy, sitting in there hours after a feed. (The color is just her digestive juices). Once we vented all that food out of her belly, she stopped crying and returned to a more normal state.

We called the pediatrician to get his thoughts. He did not think that increasing the Reglan even further (the medicine we increased last week for gastric emptying) would fix the problem. And he is not comfortable giving more direction until he examines her. Our scheduled appointment was not till February 4th. But at this point, it is tough to feed her. So, he made room in his schedule to see her tomorrow during his lunch break. Now that is a dedicated doctor!

Since Reglan was not the silver bullet, we’re wondering what could be causing her tummy to not empty, even with the higher Reglan dosage. It will be interesting to see what he says tomorrow.

In the meantime, the food pump is back in use. We figured a slow drip of diluted formula will at least keep her hydrated. Sigh…we hate the food pump and it is so much more challenging to use it since Ella moves around so much. She’s always twisting herself around the oxygen cord, but that is not a big deal. With the food pump, if it comes undone, it starts dripping food everywhere (nasty). Or even worse, it can pull out her g-tube. Then you get dripping food plus gastric juices everywhere (even more nasty)! But we are trying out a slow drip for the next several hours and still debating if we want to use it tonight. The last time we tried, we had problems with the g-tube coming dislodged.

So far, the Bun has been doing okay on a slow drip, but as the hours pass by and more gets put into her system, we’ll see how she does. It might be a long night. Please pray for her comfort and for discernment and knowledge for Dr. Perry, who will be trying to figure out the mystery child tomorrow!

Tara Hayes on January 21st, 2010 at 7:50 pm #

sweet ella, you are in our prayers. mom and dad too!

Williamsburg on January 21st, 2010 at 7:53 pm #

We are so sorry for your anxiety and heartache and Ella’s painful symptoms – what a tough situation to continue to go through. Will be praying for answers and wisdom from the doc and sleep and comfort for all three of you tonight. XOXOXO

Loren on January 21st, 2010 at 8:25 pm #

Tina, I’ll be praying for your sweet bun to get better. I’m sorry for all you have to endure.

Kellie Myers on January 21st, 2010 at 8:54 pm #

I hate to hear that you are having problems with feeds. UGH! I hope tomorrow brings some (easily rendered) answers. She’s still cute as a button 🙂

Kelli on January 21st, 2010 at 8:57 pm #

Ahhh, we love Dr. Perry. He’s our Pediatrician and such a great doc. Glad he can see you tomorrow. Hope and pray you get some answers quickly. Praying for a restful night for everyone.

John & Estela Williams on January 21st, 2010 at 8:58 pm #

Oh no, poor Ella… feeding problems are the worst for anyone. I pray that you all get answers tomorrow. Please keep us posted. Love you all!

Fran on January 21st, 2010 at 9:12 pm #

Prayers are with you.

Laura Blackwell on January 21st, 2010 at 10:53 pm #

Ok, I am very sorry to hear about her feeding trouble. Praying for a restful night and great Dr. appt.

Michelle Herman on January 22nd, 2010 at 7:17 am #

Amazing photo of all that stuff still in her tummy! No wonder she was uncomfortable! Hope it all goes well at the docs!

Marge (A Friend in Indiana) on January 22nd, 2010 at 7:27 am #

Precious baby Ella, you are always in my prayers. Praying for good news from the doctor today. God Bless You and your mom & dad, too.

Jennifer Harris on January 22nd, 2010 at 9:36 am #

Our prayers are with you!

sherry martinez on January 22nd, 2010 at 10:31 am #

sorry to hear that, I cant even imagine having all these food problems. I hope your Dr. can help you find a solution. cayden uses previcid now instead of reglan maybe a suggestion. Its working great for him. Well I just want to help. have a great day and hope to hear how it all works out. sherry and cayden

Liz Nelson on January 22nd, 2010 at 1:09 pm #

thats alot of fluid! I hope she feels better soon. Praying she does. Nayeli is also on Reglan.

nicolle on January 22nd, 2010 at 1:28 pm #

beautiful sunrise, do you live off Blackstone golf course? I hope that you get some answers, and Ella is off the drip.


Lisa Richmond on January 22nd, 2010 at 5:31 pm #

I hope you got some direction today at the doctor for sweet little Ella..I’m so sorry it has been challenging lately…You are in my thoughts often.. She is so beautiful! I love the updates! All is well here in Seattle…The girls are in the midst of their HS gymnastics season…truly rockin it! They are having a great year…so GOOD to be home.

Joel snyder on April 15th, 2010 at 12:16 am #

Ella, Sure hope the Dr.can find the answers for your feeding problem. I will be praying that we find a solution for you. Check in on you later. Love,Grandpa

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