Posted (Tina) in All Posts on September-18-2008

Today was packed.

We tried bolus feeding Ella last night, once before we went to bed at 11:30pm and once at 5:30am. It worked so much better! We were still up a few times with the nurses doing vital signs and venting her, but at least Ella was not in a lots of pain from feeding. That part was reassuring.

At 10am, Ella went downstairs to radiology to have an upper GI test. It does show that her stomach is emptying properly and quickly enough. We did express concern about how it is tough for her to swallow liquids now. She will drink, wait a second, and retch which makes her spit up whatever she just drank. This is new for her. The GI team did confirm that her nissen is wrapped tight, so there is no reflux back into her esophagus. However, the test does show that when Ella swallows, a bit of fluid is getting caught in the lowest part of her esophagus right before her nissen. The emptying into her nissen is slow and could be the reason she is having a tough time. If it does not get better over the next 1-2 months, we might have to consider a procedure where they would go down her esophagus and try to balloon open the area a bit more to help her. Only time will tell…

We had the Care Conference this morning. It was determined that they are going to continue to modify Ella’s Captopril and Aldactazide, to achieve the optimal balance of blood pressure medicine and diuretic. This is not something that requires hospitalization at this time, since she has been stable for several days.

We made huge progress with feeding over the last 2 days. She is tolerating 100ccs of volume via bolus. The challenge has been the density of the food. Today we tried 65ccs of formula to 35 ccs of Pedialyte and that seemed to work well. Tomorrow, we will try to increase the density. This is also something that we could do at home.

So at the Care Conference, we discussed what is truly keeping us here. Josh and I stressed that we want them to figure out her tachycardia. We want to know why her heart rate is so high, even when she is at rest. As I type this, she is fast asleep and her heart rate is 145. Her baseline would be 105-120. Throughout the day, it was sitting between 175-195 when she was awake. In the past several days, it would be high, moderate and low at times (seemed to be all over the place). Today seemed the worst because it was simply high all day.

We want them to figure this part out. So they ordered an EKG again (she had one in early August). We will get the results tomorrow. Also, they wanted to see if the heart rate was related to being too dry (fluid issue). So they gave her 2 bolus feeds of Pedialyte with a sodium chloride additive this afternoon. They wanted to note her heart rate before, during and after. If her heart rate became lower, then maybe she was just a little bit too dry. Well, the test did not show those types of results. Her heart rate was unchanged.

They increased her Captopril again to 1.5mg per kilo. They will be looking at the diuretics tomorrow to see if they want to decrease them or leave them the same.

The docs ordered blood labs this morning. For the second day in a row, they could not draw blood. Both times, it was someone that typically gets Ella’s veins on the first try. In other words, they are the best at drawing labs and yet, each of them tried twice and could not get Ella’s veins to cooperate.

So at the Care Conference, we stressed that these experiences are really bad for Ella. She is getting to the point where she will instantly cry if a stranger comes to her bedside and makes a motion to simply touch her. It is a bit frustrating because we tried to advocate before surgery that they try putting in a picc line, and we were dismissed. But daily pokes are torture for her; I’m actually surprised that she has lasted this long. I think we made enough of a point so they will not just continue to order labs every single day. I can’t wait to go home so she can have a good break from this scenery.

The OT department brought us a chair for Ella to sit up in. Thank goodness – – she has been laying in the crib SO much. It is the same kind of chair that her PT in Florida let us borrow. She sat in it for awhile and played. It was cute. They told us that we should try giving her diluted juice again and to see if she will take any food.

We tried her favorite, apples. Unfortunately since it has been 4 months since she had anything by mouth, she wasn’t keen on the idea of eating. It’s such a bummer because it seems like she has an oral aversion now. When she was released from the NICU in Florida, we worked really hard at home each day to get her to eat foods. Back then, it was painful to lovingly push through her oral aversions and get her to like eating. To see her today not wanting to eat at all was a bit discouraging; it makes it seem like all the progress from before didn’t do much good. I’m sure it will help in the long run, but it was tough to see her have so much regression.

We know that everything is in His hands. He is in control over every detail in our lives, including Ella’s fast heart rate and He knows the answers to all her current health issues. We’re hopeful that discharge from the hospital might be soon, but trust in His perfect timing.

Galatians 6:9
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.

Lesli on September 19th, 2008 at 4:23 am #

I’m glad to hear you had a better night of sleep last night. I was laying awake praying for Ella and thinking about your journey last night, and thinking about our last six years. It occured to me that if I knew then what I know now, I’d have tried to get some schooling in physical and occupational therapy, even if it was a class here and there at night on the computer. I would have read more books on it. All too late, I found that we could buy our own equiptment for home at…and often the insurance company paid for it. Then I would have been able to fill in the holes for the therapists that quit, the long waiting lists, etc. I could have minimized the hundreds of thousands of dollars we spent on therapy. Right now I am studying a very fat book on RDI to try to start working with Luke on my own. It didn’t occur to me until way down the road that I didn’t have to wait for everyone else to get their act together to get some therapy for my kid. We too had so many months of waiting for therapy that I look back on as such wasted time, and it makes me mad. You may have already had these thoughts, but I just thought I’d share them with you. I just noticed that great little chair and thought….”They need one of those at home!” Check out Abilitations!

Love, Lesli

Adrienne (Melissa's sister) on September 19th, 2008 at 4:38 am #

Her heart is on our minds and our hearts! Keeping you lifted up while you sleep…

Laura Leichty on September 19th, 2008 at 5:03 am #

Hello! I know you don’t know me but I found your site thru another CDH family. I just wanted you to know your sweet Ella is just adorable and her laughter and smiles in those pics are just priceless! Please know I will be praying for Ella’s complete healing and for all of you. What wonderful parents you are! Ella has an awesome support system and I’m sure she loves you all more than anything in this world! Keep pressing on, you are doing a great job.
Praying in IN,

Megan on September 19th, 2008 at 7:18 am #

Constantly thinking of you and hoping that you are doing well. The last picture of you is perfect. What a journey you are taking Ella.

Joel Snyder on September 19th, 2008 at 7:53 am #

Ella, I am sorry that I didn’t get to see you yesterday. That is probably a good thing since you were very busy. I will be in to see you today. You look like you really liked that chair and were having fun. See you later. Love, Grandpa!!!!!!!!!!

Jennifer Harris on September 19th, 2008 at 8:16 am #

We are thinking of you and praying for Ella’s full and speedy recovery. The photos are beautiful and it warms my heart to see her bright smile. Thanks again for sharing and may the peace of the Lord be with you.
~jennifer & chelsea

kristin on September 19th, 2008 at 8:17 pm #

Sweet Ella, I can see how much you like your orange chair! I love the color orange…it’s a vivacious happy color!! Stimulate those limbs girlfriend!!! Love to see you playing with your Mommy and the toys…you may want to consider tennis or volleyball in the future…you have an awesome swing girl!

May you all get good sleep tonight. Rest and repair West family. You are all in my heart and prayers.

I Love you,


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