Posted (jooosh) in All Posts on January-27-2010

Hey there Ella Fans! It’s been awhile since I (Ella’s dad) threw a post out there. I wanted to share a special moment with you.

Overall, life has been challenging with some days being better than others. I’m guessing that statement really sums up where a lot of families are right now.

October and November of last year were solid for my consulting business, but during the December holidays the work screeched to a halt. Not totally unheard of for that time of year, but the hope of things really picking up in January stalled quite a bit. Between the lack of consistent work and other family challenges, some of which Tina has posted about, it can really take a toll on your emotions and even your faith.

We took some video of Ella this last Monday, the 25th of January. This was after a day of going over our budget and discussing the direction we should take in life. It can be overwhelming to look at the storm going on around you and in those moments it’s easy to forget to keep your eyes on Christ. You find yourself starting to sink in the water with the waves crashing all around you…

….but peace was found in God affirming how awesome our little miracle is:

Above was the first day of her really crawling…below is the next day…

Thank you Lord for never leaving or forsaking us. Thank you for reminding us that you are always there and will never abandon us. We praise you for this sweet, amazing, wonderful, miracle of a child you have blessed us with. May our eyes continue to remain fixed on you, because we know that when we do, your peace is more powerful than any storm that surrounds us.

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.

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!

Posted (Tina) in All Posts on January-14-2010

Ella has been having challenges during the night, especially going to sleep after her last feed of the day. And about 2 weeks ago, I mentioned to Josh that it sure seems like she is complaining more when we feed her. Well, she put up a good fight last night, not going to bed for a few hours after her normal scheduled time. The only thing that seemed to work was venting her and letting some of the food out of her belly.

Then, this morning she complained A LOT. I’m used to a bit of whining (she does not enjoy being fed), but it seemed like she was telling me more. I checked her belly and it seemed really distended and hard. I guess it just seemed like it was a repeat of the first week of August this past summer where we went to the ER and ended up being admitted for a similar issue. What did we discover? That Ella’s tummy is not emptying like it needs to. The medicine that helps with gastric emptying, Reglan, is a necessary medicine for her. Without it, her body does not function properly. Right now, she has been on Reglan. But I had this sense that it needed to be weight-adjusted.

Before calling the pediatrician, we weighed her. It seemed like she might have some fluid on board. The last time we weighed her in early December, she was 31.5 pounds. This morning, she weighed 33.4 lbs. Mind you, she had her clothes on, but still! That is a HUGE amount of weight gain for her. And it sure seems like it is coming on quickly. When she was given this dose of Reglan last summer, she weighed around 25.5-26 lbs. Sure enough, as soon as we increased the Reglan, she returned to normal. I’m so glad that we learned from our experience last time and it only took a simple call to the doctor.

We went to the ENT last week and the doctor agreed that more needs to be done to help Ella with her daily mucoids. The Nasonex and Prevacid have helped with the fluid in her ears and cleared out her nasal passages and sinuses. However, Ella still struggles with her secretions every day. The doctor mentioned that dryness makes it worse. So normally, she would tell me to increase her free fluid and give her lots of water. Apparently, the increase in fluids would help break down her secretions. But with Ella’s history of fluid issues, she does not want to make any changes.

Ella is due for all her checkups the first week of February. She has an echo scheduled, her pulmonary check-up and the pediatrician. Once we meet with all those doctors, we will go back the next week to see the ENT. We’re hoping that the echo shows that her stints are in good shape (we’ve seen some collateral veins intermittently). We’re hopeful that her pulmonary hypertension is in check. Ella seems like she has been requiring more oxygen. Back in Nov/Dec, we thought it might be nasal occlusion. But her recent trip to the ENT eliminated that theory. So we’re curious to get these check-ups and see if they have any thoughts on her increased O2 requirement. We’re anxious to see the pediatrician to discuss her rapid weight gain and the plan for food. Her doctor has wanted to switch her food to a more appropriate toddler formula, but we wanted to increase the density of the food to 30 k/cal first. Now that we’ve accomplished that milestone, we will be looking to switch foods and manage her weight gain.

What is that over there? Oh yeah, the Pack-n-Play! Ever since we set up a new play area on Dec 28th, Ella has not been back in her Pack-n-Play. It has been great for her to be out and have more room to explore. During a recent PT therapy session, Ella got on all fours and took a couple of steps crawling. The PT got tears in her eyes. Isn’t that sweet? She just knows that it is such a big milestone for Ella. Again, we’re still a ways off from Ella fully crawling or walking around, but she is still making progress.

Today is Aunt Shannon’s birthday. And tomorrow is cousin Richard’s birthday. We wish we could be there to celebrate!

Posted (Tina) in All Posts on January-1-2010

We decided that we had to ring in the first day of the New Year. So we bundled Ella up in several layers, hat, scarf, mittens, etc. and headed out. You can see from the photos that she was not too happy during the process of getting layered with clothing. She gave a good fight. But once we arrived and got out of the car, she did well.

Each year, they have Zoo Lights at the Denver Zoo. We’ve never attended in all these years of living here. So although it was very crowded and bitter cold (25 degrees), we went for it! Ella did enjoy looking at all the lights and strolling around. She is not used to being bundled especially with mittens on her hands, so she held her arms straight out while riding around in the stroller. It looked pretty funny.