Posted (Tina) in All Posts on November-28-2010

The past few weeks have continued to go well with the blenderized diet. We’ve had only a few retching moments that caused something to come up. In the past several months using commercial formula, we were having that challenge multiples times per day, so that part is better. The unfortunate part: weight loss. We dipped below 13 kilos or 28 pounds, but contacted the dietician who told us to double the amount of MCT Procal powder to 3 tablespoons per day. This adds extra fat and calories without adding fluid. We just weighed her on 11/24 and she was 13 kilos. We’re hoping to see that number increase within the next few weeks at our next check-up.

The biggest concern, especially the past couple of weeks, is pass-out spells. We mentioned that we were having some on the last post and that we’d given Bumex. But it seemed like the Bumex wasn’t doing much and the frequency of the spells was continuing to increase. We’ve had several per week, sometimes multiple per day. Since we resolved that fluid overload was not the cause as the Bumex wasn’t doing much (last dose on 11/20), we next thought it might be her SVC. We have not been to the heart cath lab since Sept 2009, so maybe it was related to her heart. We had six pass out spells over the 5 days prior to Thanksgiving. Sure enough, the doctors were concerned enough to bring her in for an urgent echo to check her SVC and pulmonary hypertension on Wed, 11/24, the day before Thanksgiving. When we arrived at the hospital, we were not sure if we would be admitted and have to stay there for Turkey Day. Fortunately, Ella checked out great. The gradient pressure in her SVC was 2, versus 5-7 on the last echo. That is very little pressure and great flow which means her heart stents and blood thinners are working great. There was no evidence of pulmonary hypertension. So we were relieved at these findings plus that we did not need an admission. Although it still leaves a mystery, why the sudden increase in pass out spells?

One other theory is reflux. Apparently, the reflux can cause a lot of pain. So when she clamps down to cry real hard, it can place lots of pressure on her belly and the reflux can initiate, shooting up her esophagus. I’ve never experienced reflux but countless others have described the pain it can bring, almost to the point of not being able to breathe. One other interesting clinical symptom that just came on the past week: bad breath. This can also be another symptom of reflux. Literally, you will brush her teeth, mouth, tongue and right afterwards, her breath still smells. We do think her nissen has loosened since her last nissen surgery in Sept 2008. There are a few ways to check and quantify the reflux: an upper GI (see if they can see the barium dye going into her esophagus) or a ph study which includes a hospital admission and a tube up her nose for 24 hours. We’d prefer to try other, less invasive tests first.

All in all, we’re just hoping the pass out spells go away or are greatly reduced. It is scary to have your kid turn purple/blue, eyes roll back, and lose consciousness for a brief time. It is normal for toddlers to have behavioral breath holding spells and I think if Ella did not have serious underlying medical conditions, I would chalk it up to that solely. With her medical history, her doctors are not convinced that it is just breath holding spells either. And it is strange because we can go months without any and then all of a sudden they will come on with such great frequency. The past has shown us that there is an underlying medical reason.

So, we discussed a few things: we started her new blenderized diet at the end of October, but sure enough, pass out spells have increased. Could she be allergic to something and/or is there an ingredient in the diet that is causing more reflux? Ella already takes Zantac which is used to treat gastroesophageal reflux disease (GERD), a condition in which backward flow of acid from the stomach causes heartburn and injury of the food pipe (esophagus); and conditions where the stomach produces too much acid. But we asked if the dosage could be increased. Sure enough, instead of 30mg per day, she can have up to 40mg per day. We opted to try that out. Also, they mentioned that calcium carbonate might not help as it is short acting, but certainly won’t hurt (Tums). It turns out that Children’s Pepto Bismol tablets have the exact amount per dosage that work for Ella. She can have 400mg, a max of 3 doses per day. So, we just dissolve in a syringe and give to her with 3 of her feeds throughout the day. Once we left the hospital, we bought some and started administering on Wednesday evening along with the increase in Zantac dosage. She has not passed out since Tuesday night and it is Sunday. We’re hopeful that maybe these two slight changes are making enough of a difference. Just to be safe, we were supposed to be headed to the hospital tomorrow morning for an upper GI. This will give us a picture of her tummy and its function with the barium dye placed in it. Now that we have not had any pass out spells with the medication adjustments, we’re opting to wait it out a bit longer.

We had our first solo date night. Boy, that was a treat – it had been WAY too long.

Also, we had a nice, mellow Thanksgiving besides the 4 canines!

On a positive note, Ella is cruising. Not on a ship, but walking around this house like nobody’s business! It’s really fun to see her progression in such a short amount of time. We figured that we would post a couple videos, so you can see for yourself. She’s also starting to pay attention to the dogs more and found a new game to play with Dad. Enjoy!

And finally, I felt prompted to share a portion of a blog that I’ve been following lately. The baby was born with a congenital heart defect and was just released from the NICU. The father wrote these words on their blog the other day and I couldn’t share the same sentiments any better:

With Thanksgiving coming up tomorrow, I’ve been reflecting a lot on the gifts that God has given our family, and I can’t stop thinking about the most unexpected ones. My thoughts lead me back to what I wrote in my post on September 17th while Bowen’s chest was still open from surgery, only days after his cardiac arrest. These words feel as true to me now as they did when I wrote them.

“A friend told me that I’ve seen too much, but I’m realizing that I might not see enough. Everything I’ve watched happen in this hospital, all the pain I’ve felt, is deepening my faith, strengthening my marriage, and molding my character. As I lovingly stared into Bowen’s eyes just before midnight, my face only inches from his chest, I thought, ‘This love is an awesome mess.’ I know I’m not the first person to think or to say something like that. Many great works of art have titles that are reminiscent of those words. I believe it’s because tension is the place where the worst of life and the best of true hope meet to unveil our eyes to God’s artistic work of redemption. What a mighty and creatively loving God we serve. He allows us to know great pain, so that we can know the greater pleasure of trading it in for purpose.”

This Thanksgiving, because of all we’ve been through, we have even more to be grateful for. I’m not suggesting that we’re thankful for pain and loss, but that pain and loss can make us thankful.