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.

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!

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!

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.

Yep, the curls needed some lift. So the scissors came out and boy did the curls bounce back! It is tough to cut her hair because she doesn’t like it, squirms, screams and turns blue. But the results are not too bad considering that I am not a professional and I could only tolerate a few minutes!

We finally took the time to create a new play space for Ella. We’ve been trying to get her to explore outside of her Pack-n-Play, but she never seems to like it as much. Having videos handy is the key. So, we found an old TV in the basement along with an old notebook computer. After Josh worked his magic, we just select which movie of Ella’s to play and it appears on the TV. Once complete, we placed a comfy blanket on the carpet to create a softer, defined space for her to explore. She LOVES it. We’re excited because this is another big step for Ella. From this point forward, we will try and use the Pack-n-Play less and less.

Lola likes being close and decided to hang out with Ella in her new play space. So cute…

We’ve been trying the combo of Prevacid and Nasonex to see if that will help with Ella’s secretion challenges. So far, it hasn’t. I’m bummed. Nasonex takes up to 2 weeks to reach its maximum effectiveness when taken each day. So, we still have another week to see what happens. Last time, we didn’t notice a change until around that time, although she also got a real bad cough too. So, the doctor wanted us to try Nasonex again in combination with the Prevacid. We’re hoping the Prevacid will block the reflux and that the acids from her tummy will not have a chance to travel up her throat and cause a cough.

It does seem like Ella has been running dry these days. The upside is that her saturations seem good and her heart rate is lower overall. She tolerates more things, like occupational and physical therapy. When she feels better, she is in a great mood. The downside is that she gets really thirsty. It got to the point where she was waking up several times per night and many times wanting water via the syringe. So her sleep has not been the best. She seems to be waking up a lot each night. Last night, it was only 2 times, but Christmas Eve into Christmas Day, she was up 10 times! To try to see if we can balance her out, we have been skipping her night time dose of diuretic. We will see if this helps this week too. Mom hopes so…I like my shut-eye.

Aside from that, Ella is definitely gaining weight. For her, this is a good thing. Gaining weight and getting bigger is what is going to help her lungs grow. I just weighed her and she was 14.25 kg or 31.4 lbs! She was just 27.5 lbs at the beginning of October. Yikes! And with the weight gain, she is fluctuating between a size 3T-4T. I can’t believe it. Again, this is great except for the fact that she cannot crawl or walk, so my back is feeling it for sure! The hardest is lifting her in and out of her Pack-n-Play (which sits on the floor). She is getting stronger and moving closer to mobility. However, with her weight gain the past few months, we’re not sure that her muscle strength has kept the same pace. So in some ways, we think the weight gain might be slowing down her mobility goals. She still seems like she is 6 mos-1 year away from any type of independent mobility.

Here she is enjoying her new turtle from Christmas. Over time, we’re hoping to convince her to sit down, hold on and try out the wheels on her own!

It was nice weather for Denver, so we decided to take a stroll in a favorite neighborhood. Ella had a great time and looked oh so cute sporting her ponytails.