Posted (Tina) in All Posts on January-23-2010

Another beautiful sunrise and another new day. Thankfully, Ella is feeling better.

Dr. Perry was satisfied with Ella’s overall progress since he saw her last October. Once on the scale, she weighed in at 33.2 pounds. Ella is not obese, but gaining 8 pounds in 6 months is too fast (most kids will gain up to 6 pounds between ages 2-3). So, we are going to cut back on her food intake. She was taking 1175 ccs of EleCare at 30 k/cal (1175 calories per day). Now, we are going to try 1000ccs of EleCare at 30 k/cal (1,000 calories per day). In order to make her comfortable, we have to use the food pump for feeds. Basically, we’re just taking two steps backward. Then, just gradually we will increase until we get back to 100% bolus feeds.

Also, he noted that Ella’s system is fine but she has delayed motility. Many kids with cardiovascular disease have slower metabolisms which can also contribute to slower motility. Her developmental delay can play a part too. She is not as active and lays around more than a healthy kid her own age. This can all impact motility and processing of food. He is hopeful that as she ages, this will improve. Also, he noted that Reglan only has a limited effect on the issue. He decided to increase her Reglan intake to 1.5ml four times per day. About 10 days ago, she was taking 1.0ml three times per day. Then, we tried 1.5ml three times per day this past week and still had a problem. So now, we are adding an additional dose of 1.5 ml each day to see if it will make her more comfortable.

We have another appointment scheduled with Dr. Perry for February 4th. We decided that it would be best to keep that on the schedule. By then, we will have seen her cardiologist and pulmonologist. We can weigh her again to check weight gain as well as discuss her feeding status.

When they placed the pulse oximeter on Ella at Dr. Perry’s office, it took 1.5 liters of oxygen to get her in an acceptable range. Right after her SVC procedure last September, she only required 750ccs of oxygen. So, her oxygen requirement has doubled. The collateral veins are slight but have reappeared. Last night, it seemed like Ella had a headache. We knew it was not food or tummy related based on her feeding schedule. But she was whining a lot and blinking her eyes frequently. Her eyes even appeared a bit puffy and light purple. We gave her Tylenol and she perked up after about 30 minutes. Headaches can be a side effect of increased pressure in her veins from the SVC becoming blocked (likely her tissue has grown into the mesh stents). I’m hopeful that maybe all of this is not related to her SVC, but it sure seems like all the signs are pointing that direction.

I’m not really mentally ready for another procedure in the heart cath lab, as it has only been 4 months today since the last procedure. In any case, the echo that will determine if another procedure is necessary is schedule for Tues, Feb 2nd. If we need to proceed with another one, that would mean 3 heart procedures in one year.

For now, we are laying low attached to a food pump and trying to take it easy until all her tests can be completed. Thanks for all the thoughts and prayers. They are always appreciated. And of course, even with all of this, the Bun manages to move around and crack plenty of smiles.

Psalm 9:10 (NIV)
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

sherry martinez on January 23rd, 2010 at 2:30 pm #

Tina it is funny to me how the Drs always tell us gain weight and then she gained to much. our kids take forever to get on the chart it just amazes me, it makes me wonder if the push for weight gain was truly as critical as they made it seem. anyway i feel for you with her heart procedures. Cayden had to have his patch repaired 3x before this last one seems to be working. So try and hang in there i know its very tough. I will keep you all in my prayers. cayden says hi to ella. hugs sherry and cayden

Kristen on January 23rd, 2010 at 9:56 pm #

Have been reading your updates now and then. So thankful you still have the blog! This verse really expressed what we know about our loving God. Hard to imagine He loves Ella even more than you do. You two are still a wonder to me. Praying you through!

Steve and Joan on January 24th, 2010 at 1:34 pm #

Ella is such a pretty girl and sits up so very straight – thoughts and prayers with all three of you and the doctors and nurses. Please know you are in our prayers daily. Love and hugs –

Debbie Bennett on January 24th, 2010 at 5:17 pm #

Has she had an xray since this latest trouble with her digestion? The reason I ask is because John started throwing up that color stuff. The docs thought it was a virus and after a few days, he was severly dehydrated and admitted him to the hospital. After two days on IV fluids, he was still throwing up green fluid which later started having black “flakes”. An xray revealed that he had a bowel obstruction. He was immediately transferred to another hospital for immediate surgery. He had 22 kinks in his intestines…. Just a thought. She is so adorable and I’m amazed at how well she is doing. Hang in there!

Jill E G on January 24th, 2010 at 10:11 pm #

Prayers for all of you.

Marge (A Friend in Indiana) on January 25th, 2010 at 9:02 am #

Prayers always for all of you!

Morgan Mayes on January 26th, 2010 at 1:44 pm #

Hi Tina! Long time no see. I was recently made aware of http://www.corasstory.org , an effort by the parents of Cora, who also had CHD. I remembered Ella, and wanted to see how the dear Bun was doing.

She has so much hair now! I’m so excited to see her sitting up and looking so happy. It’s been over a year since I’d seen any photos.

We had our own daughter, Emma, last year on February 1st. It is amazing how much we can love those little ones, isn’t it? We also just found out we’re pregnant with our 2nd.

God bless you Tina. I’ll be praying for you three today. Hope the sun is coming out in Colorado like it is here in Texas.

Joel snyder on April 15th, 2010 at 12:26 am #

Ella, It sounds like maybe Dr. Perry may have found some evidence concerning your SVC. Just hang-in and time will tell. Love,Grandpa!!!!!!

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