Posted (jooosh) in All Posts on October-31-2012

Posted (Tina) in All Posts on October-19-2012

Posted (Tina) in All Posts on October-16-2012

Since the last time we posted, we have attempted to solve the mystery behind Ella’s coughing and retching. We wanted to reverse any changes recently made, to see if we could get her back to baseline.

We reduced fluid intake, eliminated protein juice that had been added for extra calories and tried increasing her dose of aldactazide (diuretic) back to twice per day (we had reduced it last spring). This allowed us to reduce her oxygen requirement back to 1/2 liter and it seemed that the retching disappeared, but there was still an intermittent cough.

From there, we figured that we would research pulmonology further. Along with the increase in diuretic, we tried an inhaler (albuterol) – that did not make a difference. Then, we tried a burst of steroids for 5 days. Once again, no change in the cough. Next on the list was to investigate options with GI. We increased her zantac dosage to the maximum dose from 2.7 ml to 3.0ml. The silver lining: we were able to make this increase in zantac because she gained weight over the past several weeks to 32 pounds (up from 30 pounds)!

It does seem like the increase in zantac over a two week period (along with the reduced volume, increased diuretic) has made the difference we were looking for – the cough pretty much disappeared. She started to do really well last week and into the weekend – sleeping better and very chatty. Just in a great mood overall.

So this week, we thought we would try adding the juice back into her diet. So far, it has not produced good results. Yesterday, we tried diluting the juice with water and giving it throughout the day (this replaces plain water to provide more calories). Unfortunately because it is a medicated juice with protein, it slows down the already slow process in her guts. So when we feed throughout the day, we can tell that her tummy is taking way longer to drain and process the juice. Then when we go to feed again, the cumulative impact of it not draining throughout the day ends up making her uncomfortable.

Today we thought that maybe we would try giving her the juice without diluting it and then giving plain water the rest of the day to see if that would help the drainage/volume issue. Unfortunately, the fully strengthened juice is not something she tolerated. Within 10 minutes of filling her belly with the protein juice, she was fussy and wanted to lay down. It was chewing up her belly and she was retching a lot. Normally, we would just drain the juice but we alo gave it with a bunch of meds. So we decided to just let her body process it. It created lots of gas and belly pain for her; she was misearable. We ended up having to cancel her speech therapy appointment because she was so upset. Finally, it went through her body fast and she had a bowel movement. Once it passed through, she was normal again. Fortunately, that happened about 20 minutes before her occupational therapy appointment so she was still able to keep that appointment. We fed her normally the rest of the day w/o any more juice and she did great.

We may try once more experiment of diluting the juice down even further – it won’t give her the additional 250 calories per day. But if we could get her to tolerate the juice enough to have 125 calories extra per day, that would likely help with the weight gain. It’s just so tough when she is fluid restricted; your choices are limited. So the good news is that we’ve resolved the cough – now we are basically back to baseline but faced with the challenge of the extra calories and the best way to do that within the contraints that we have with her cute little body!

One other health update: when we went to see the pulmonologist, we had a typical echocardiogram to check for pulmonary hypertension. One strange anomaly they found: a small amount of fluid accumulation around the lining of her heart. Normally, this is only seen with infections and Ella would be demonstrating all types of other obvious side effects that accompany an infection. Since she isn’t showing those signs, the pulmonologist was perplexed but not especially concerned.

When I followed up, I asked if they could get a second opinion from her cardiologist. The team actually went and acquired three other opinions internally at the hospital – none of them were concerned with the findings, since they were so minor and there are no other clinical symptoms. But as a parent, we have never seen this on any of Ella’s echocardiograms. So to be conservative, I requested that we check it again in 2-3 months (versus waiting 6 months which is the normal timeframe). This means that we will need to take Ella in for an ECHO in November or December to see if it is still present, has gotten worse or been minimized.

Ella is still doing well with her occupational therapy and is having a great time – she loves creamy garlic alfredo sauce! This is a girl after my own heart.

As a follow-up to the last post, Ella and Grandma Eusey have been having a great time hanging out each day together and bonding. It’s fun to see their progression with each other.

Grandma Eusey found a place to live nearby and hopes to make the move from California once the baby boy is born (Josh will have three weeks of paid paternity leave, so she will move while Josh is at home helping).

I don’t have too many photos of the great event, but Josh also turned 40 years old. One of his other college friends was turning 40 too, so we combined the surprise events for the day. It was complete with pizza, cake, and college guy friends going to a shooting range, dinner and drinks in downtown with a hotel as a crash pad (one friend even flew in from Florida). Overall, it was a memorable day for him. Much better than hanging out with the pregnant wife!

On the baby front, Josh and I also went and had some maternity photos taken by a local photographer.

My dear friend, Terri came all the way in from Dallas to throw me a baby shower – my neighbor was gracious enough to open her home. Many friends and ladies from the neighborhood arrived to give gifts and well wishes for the baby boy.

Finally, we’ve been getting the room as well as all the details prepared for our new arrival. Here is some shots showing the progression and transformation of a very pink girly room to a boy room with a vintage airplane theme. Some of the walls are still blank and have some room. We’re looking forward to Grandma West coming out with her artistic talent to put her stamp on the boy’s room (just like she did for Ella). She is planning to visit after the baby boy arrives.

So for now, the due date for our baby boy is just one week away on October 23rd. No contractions or any signs of labor – he seems content to sit in my tummy and bake longer! Besides being very uncomfortable (feeling large, pelvis pain, sciatic nerve pain, and all the other fun pregnancy symptoms), everything is progressing and measuring normally. At this point, my doctor said that we would discuss a new strategy if the baby is one week late – October 30th.

We’re just waiting in anticipation for our new arrival. Pray that all goes well in the coming days and that Ella’s little brother will make his arrival soon!